[CMLHope] when or why to take chlorella
Hi Beth, I have enclosed some information that is on web md http://www.webmd.com/vitamins-supplements/ingredientmono-907-CHLORELLA.aspx?activeIngredientId=907activeIngredientName=CHLORELLA 18's Uncle Marty bkbar...@aol.com to cmlhope Dear Uncle Marty, thanks for sharing your wisdom and hope . I wonder if you could say a bit more about when or why to take chlorella, and when not to. I understand that a doctor should know everything we are taking outside of our medications. They often do not know how these types of supplements will interact with our meds. My doc said absolutely no to this type of supplement, anything that affects the blood cells in this way. I'ts always a struggle to advocate for oneself and do what one feels best, against the backdrop of so much mis information and varying views about supplements, vitamins, and mixing other meds with our kinase inhibitors. Thanks for your ongoing light and sharingBeth -Original Message- From: Martin Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Aug 8, 2012 10:22 pm Subject: Re: [CMLHope] Chlorophyl -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Re: stopping meds.
Yes indeed Richard, You stated that since all of these TKI's have been around that I will die of something else. You must remember that everyone who is born will eventually have to die. So it is good to know that CML will not be your undoing. I am one of those members that you spoke about. I had a bone marrow transplant more then 23 years ago, way before any of these TKI's were around. I guess that it wasn't my time yet. Also take a look at Skip, he is still alive after 35+ years. If you want to talk about strength to challenge CML head on, then take a look at Skip. Another long time person is Lottie. She really has been through the mill, trial after trial and is still here with us. With all of these advancements the CML community has stricken a blow to CML, and this will continue to happen. Maybe not in my lifetime but the disease CML will cease to exist, just like Polio was at one time. 18's Richard (Symbol for life) Marty On Mon, Aug 27, 2012 at 11:50 PM, Richard H richard1huff...@comcast.netwrote: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the T as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 Messages in 1 Topic
Suzie, I wish you the very best of luck. 18's Marty On Wed, Aug 29, 2012 at 9:47 AM, Sheila Watson sheila.a.wat...@gmail.comwrote: My take on the stopping of the drugs after being negative for several years, I think that is up to the person and their doctor. I, personally, did not feel comfortable in completely quitting Gleevec after being on 400mgs. since February 2004. What I did ask my Doctor was if we could lower the dosage to 200 instead and she said that that would be okay. Her very words were, I do not feel comfortable with you going off of Gleevec, either. So, that is what I did, cut my dosage in half. So far, I am feeling great. Will go for my 6 month check up the day before Thanksgiving, and it will be awesome to see how my body has responded to being on only 200 mgs. instead of the 400. Love to all, Suzieq -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Re: [cml 2] Fw: Neutropenia - How To Avoid Infections
Hi Skip, you sure do have a lot of complicated problems but the one thing that really counts is that your still alive to have these problems. I mean just look at yourself being a survivor with CML for over 35 years. That is what really counts. I admire you for all of what you have gone through and are still going through You truly have 18's Marty On Sat, Sep 1, 2012 at 9:20 AM, Skip Duffie skipd_2...@yahoo.com wrote: Great Article Lottie, and the things it tells you to avoid are exactly what has been told to me, at least once or twice a month. My blood reports tell me I have Leukopenia, Neutropenia, and Thrombocytopenia. If anyone has any of these in their report they should look out for your ANC (Absolute Neutrophil Fill count.) Talk to your doctor if your below 1000, which is low be extra carful if below 500, normal is around 2000 10 9/L (that should be an upper case little nine) skipd *From:* Lottie Duthu lotti...@att.net *To:* CML c...@yahoogroups.com *Sent:* Friday, August 31, 2012 2:54:45 AM *Subject:* [cml 2] Fw: Neutropenia - How To Avoid Infections Neutropenia: A Vulnerable Time for Infections What Is Neutropenia? There are many types of white blood cells, each with specific roles, but their main job is to fight infection. Neutropenia is a condition in which a person has very low amounts of a type of white blood cell called a neutrophil in their body. Since white blood cells attack harmful bacteria, viruses, and fungi, neutropenia increases the risk of infections. How to Protect Yourself if You Are Neutropenic Good personal hygiene and avoiding things that promote the growth of bacteria lower the risk of infection. The following suggestions are for people with neutropenia who are outside the hospital: a.. Avoid people with signs of infection and avoid large crowds. Wear a face mask if you cannot avoid crowds. b.. Avoid people who are sick with communicable (contagious) diseases, including a cold, the flu, measles, or chicken pox. c.. Stay away from children who have recently been given live virus vaccines such as chicken pox and oral polio, as they may be contagious to people with very low blood cell counts. d.. Bathe daily and wash your hands frequently, especially after using the bathroom, after touching animals, and before eating. e.. Use lotion or oil if your skin becomes dry. f.. Clean your rectal area gently but thoroughly after each bowel movement. Let your doctor know if the area becomes irritated or if you develop hemorrhoids. g.. Brush your teeth after meals with a soft toothbrush. Rinse your mouth twice daily with a solution made of water and either salt or baking soda. Temporarily avoid flossing, which can open new wounds and create an entry for bacteria. h.. Avoid accidents and injuries. Be careful not to cut yourself in any way, including the cuticles of your nails. Use an electric shaver instead of a razor to avoid cutting yourself while shaving. i.. Do not squeeze or scratch pimples. j.. Clean any cuts and scrapes with soapy warm water right away and apply an antiseptic. k.. Avoid gardening, cleaning bird cages, cleaning fish tanks, or changing cat litter, all of which can expose you to bacteria. http://inhealth.about.com/when-cancer-care-leads-to-neutropenia/neutropenia-a-vulnerable-time-for-infections?did=t5_rss39 l.. m.. FYI, n.. Lottie Duthu o.. [Non-text portions of this message have been removed] __._,_.___ Reply to senderlotti...@att.net?subject=Re%3A%20Fw%3A%20Neutropenia%20-%20How%20To%20Avoid%20Infections| Reply to groupc...@yahoogroups.com?subject=Re%3A%20Fw%3A%20Neutropenia%20-%20How%20To%20Avoid%20Infections| Reply via web posthttp://groups.yahoo.com/group/CML2/post;_ylc=X3oDMTJyYXVlN2xpBF9TAzk3MzU5NzE0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARtc2dJZAMzMDQ0OQRzZWMDZnRyBHNsawNycGx5BHN0aW1lAzEzNDY0MTUwMjQ-?act=replymessageNum=30449| Start a New Topichttp://groups.yahoo.com/group/CML2/post;_ylc=X3oDMTJmYTRrcDJhBF9TAzk3MzU5NzE0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDZnRyBHNsawNudHBjBHN0aW1lAzEzNDY0MTUwMjQ- Messages in this topichttp://groups.yahoo.com/group/CML2/message/30449;_ylc=X3oDMTM3MnBnNHNpBF9TAzk3MzU5NzE0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARtc2dJZAMzMDQ0OQRzZWMDZnRyBHNsawN2dHBjBHN0aW1lAzEzNDY0MTUwMjQEdHBjSWQDMzA0NDk-( 1) Recent Activity: - New Membershttp://groups.yahoo.com/group/CML2/members;_ylc=X3oDMTJnM2ZiMW12BF9TAzk3MzU5NzE0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDdnRsBHNsawN2bWJycwRzdGltZQMxMzQ2NDE1MDI0?o=6 1 Visit Your Grouphttp://groups.yahoo.com/group/CML2;_ylc=X3oDMTJmNmFiam9hBF9TAzk3MzU5NzE0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDdnRsBHNsawN2Z2hwBHN0aW1lAzEzNDY0MTUwMjQ- [image: Yahoo! Groups]http://groups.yahoo.com/;_ylc=X3oDMTJlcjQxM2MyBF9TAzk3MzU5NzE0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDZnRyBHNsawNnZnAEc3RpbWUDMTM0NjQxNTAyNA-- Switch to:
Re: [CMLHope] Sprycel induced PAH
Hi Greenie, Maybe you might want to have your doctor give you an MRI or CAT scan to rule out any brain bleeds. It is probably like you say, the hot and humid weather here in Florida, but why not be safe and have it checked out? I also live in Florida and this heat and humidity also gets to me. 18's, Marty On Thu, Oct 4, 2012 at 12:27 PM, myvet...@aol.com wrote: ** Hi group, Brain bleeds, I've noticed that some of you have made comments about brain bleeds. How do you know if you are having one? This last few days I've been getting head aches on the top left side of my head. I can feel my heart beats when it does this. I think it's the weather here in Florida. Lots of heat, Humid. and pollen in the air the last few days. Fall is right around the corner and the weather should change. Grass is high and weed is very high. greenie In a message dated 10/3/2012 4:49:27 P.M. Eastern Daylight Time, pfemail...@gmail.com writes: Hi Jeanie- There’s no reason why you can’t become informed about pleural effusion on your own. Knowledge can help relieve anxiety and also serve as an early warning system. You can find information here: http://www.medicinenet.com/pleural_effusion/article.htm and here: http://www.webmd.com/lung/pleural-effusion-symptoms-causes-treatments Take good care, Pat ** ** *From:* cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] *On Behalf Of *icandoall...@aol.com *Sent:* Wednesday, October 03, 2012 12:59 PM *To:* cmlhope@googlegroups.com *Subject:* Re: [CMLHope] Sprycel induced PAH ** ** Hi Kelly and good to hear from you and glad you are doing so well. I failed on both Gleevec, after 5 years and Tasigna after 3 months and was put on Sprycel. I became PCRU after only 3 months. I just had my 3 month check up and I tried to talk to my Onc about the PE. He said none of his patients developed it and PE was the last thing I needed to worry about. Needless to say, ever since I heard your problem, I am indeed worried about PE. I ask him what the symptoms were and he just said you will know it if you have it. This Onc is one of the top specialist at Moffitt Cancer Center. Go figure. I will still worry about it and hope it never comes. I have been on Sprycel since 2009. Blessings, Jeanie3 -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Re: Sprycel induced PAH
Hi Kelly, I'm so happy to hear that everything is going so well for you. 18's, (symbol for life) Marty On Thu, Oct 4, 2012 at 10:57 PM, Richard H richard1huff...@comcast.netwrote: On Saturday, September 29, 2012 9:15:49 AM UTC-5, kellyelise wrote: Hi folks! It's been awhile since I last posted...but, I had such good news, I had to share! Some of you might remember that I developed a severe case of pulmonary hypertension. My docs were in disagreement as to the cause of this, but, with recent testing - I have completely recovered! This is proof that the Sprycel caused the PAH. Sothey will be removing the Hickman and Remodulin pump in the next month or so..after I have a cardiac cath to make sure the echocardiogram is accurate. I am currently taking Tasigna 100 mg/day and have remained nondetectable since 4 months after initiation of the Tasigna. I have to say...this drug has been such a relief compared to the Gleevec and Sprycel. Probably because of the low-dose. It's hard to tell what side effects are caused by the Remodulin, Revatio or Tasigna...but, I am doing well. So, please fellow Sprycel users, please be aware of the PAH possibility. It is very hard to detect and it sneaks up on you. Wishing everyone well! Kelly -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] The father of bone marrow transplants dies at 92
E. Donnall Thomas, a physician who pioneered the use of bone marrow transplants in leukemia patients and later won the 1990 Nobel Prize in medicine, has died in Seattle at age 92. The Fred Hutchinson Cancer Research Center announced the death Saturday. A spokesman said the cause was heart disease. Thomas' work is among the greatest success stories in the treatment of cancer. Bone marrow transplantation and its sister therapy, blood stem cell transplantation, have improved the survival rates for some blood cancers to upward of 90 percent from almost zero. This year, about 60,000 transplants will be performed worldwide, according to the Hutchinson Center. Imagine coming up with an idea, making it a reality and touching that many lives, said Dr. Fred Appelbaum, Thomas' friend and the director of the center's Clinical Research Division. Thomas took after his father and became a doctor after getting his medical degree from Harvard. In 1956, he performed the first human bone marrow transplant. Thomas, along with a small team of fellow researchers, including his wife Dottie, pursued transplantations throughout the 1960s and 1970s despite skepticism from the medical establishment. They sought to cure blood cancers by destroying a patient's diseased bone marrow with near-lethal doses of radiation and chemotherapy and then rescuing the patient by transplanting healthy marrow. The aim was to establish a functioning and cancer-free blood and immune system. The procedure would go on to become the standard treatment for many sufferers of leukemia and lymphoma. He was brilliant, he was incredibly generous and he was quick to deflect praise from himself to the individuals around him, Appelbaum said. At the same time, while he was quiet and modest, he was stubborn, he added. He believed in what he was doing and he was going to make it happen. It's hard to imagine today how hard it was to make this reality because it was against the prevailing medical wisdom. Thomas joined the University of Washington faculty in 1963. In 1974, he became the first director of medical oncology at the Hutchinson Center. It is now one of the world's top cancer treatment and research institutions. Thomas also edited the first two editions of the bone marrow transplantations reference book, Hematopoietic Cell Transplantation, which would become a bible for the field. To the world, Don Thomas will forever be known as the father of bone marrow transplantation, but to his colleagues at Fred Hutch he will be remembered as a friend, colleague, mentor and pioneer, Larry Corey, president of the research center, said in a statement. Thomas is survived by his wife, two sons and a daughter. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] FDA approves new drug for CML
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm325895.htm 18's Marty -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Why are my posts not coming through?
Why are my posts not coming through? -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Why are my posts not coming through?
Hi Millie, As you can see your post to me did come through. Thank you for your reply. I would like to answer your questions and comments so I will write in between your lines in CAPS. On Sat, Oct 27, 2012 at 12:13 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Marty.Please let me know if this post gets through to you. I received your message about the new drug that's out, and was going to write last night and thank you for sending out the information, but got tired, shut down, and went to bed. I've been in a lot of pain lately, and laying down seems to help.* YES I KNOW ABOUT ALL OF THE PAIN YOUR HAVING, AND I AM REALLY SORRY TO HEAR THAT. I PRAY THAT IT WILL EASE UP ON YOU. I ALSO HAVE SOME TERRIBLE PAIN IN MY BACK AND JUST LIKE YOU I HAVE TO LAY DOWN IN BED TO EASE IT. I SOMETIMES USE A HEATING PAD AND IT WORKS BUT ONLY TEMPORARILY. I EVEN WENT TO A MASSAGE THERIPIST AND THAT SEEMED TO HELP BUT JUST TEMPORARILY AS WELL. I TRY NOT TO TAKE ANY PAIN MEDICATION BECAUSE OF MY KIDNEY FAILURE AND IT WOULD INTERFERE WITH MY DIALYSIS TREATMENTS * I was using a pain patch (Lidocaine) and stopped as when I took it off a couple of weeks ago, there was blood on the patch. My cardiologist said that it was probably because of my thinning skin.* MILLIE, WHY DON'T YOU TRY SOMETHING CALLED BAG BALM ON THE SKIN THAT IS BLEEDING. JUST DON'T PUT ANYTHING ON IT UNTIL IT STARTS TO HEAL. BAG BALM IS VERY GREASY SO NOTHING WILL BE ABLE TO STICK TO IT. IT'S ORIGINAL USE WAS FOR COWS UTTERS ESPECIALLY IN THE WINTER WHEN THEY ARE CHAPPED BUT IT REALLY WORKS WELL FOR ANY SKIN PROBLEMS. IT COMES IN TWO SIZES. MAKE SURE TO BUY THE SMALL SIZE BECAUSE IT WILL LAST FOREVER. JUST A DAB WILL DO YOU AS THEY SAY. IT COMES IN A GREEN SQUARE CAN AND CAN PROBABLY BE PURCHASED AT SOME OF THE LARGE DRUG CHAINS LIKE CVS OR WALGREENS. * I didn't use them all of the time, but maybe once or twice a week. I may try it again when it is all healed. Don't know yet! At any rate, trying to control the pain is difficult and I don't like to take a lot of the Vicoden, so limit myself to once or twice a day. * ** *I hope that this finds you doing okay. I know that you go through a lot and that you are a very strong person.* ACTUALLY MILLIE, ANYONE THAT HAS TO GO THROUGH ANYTHING LIKE YOU OR ME IS AUTOMATICALLY A STRONG PERSON. WE DIDN'T ASK TO BE SICK BUT NOW THAT WE ARE WE JUST HAVE TO FIND WAYS TO BE ABLE TO DEAL WITH IT. * I think of you when I'm hurting and know it's nothing compared to what you have to deal with. You are always here for all of us, and I know you are appreciated by all.* MILLIE, I AM NO DIFFERENT FROM YOU OR ANYONE ELSE. WE JUST HAVE TO DO WHATEVER WE CAN TO JUST KEEP ON GOING. AGAIN I AM VERY SORRY TO HEAR ABOUT YOUR PAIN. I HOPE THAT IT WILL GET BETTER REAL SOON. ** *We have a bad storm headed out way, and it looks like the whole state of PA will be involved. I'm only hoping that it won't last to long and not cause a lot of damage. I worry about the trees coming down on the house, but there's nothing I can do about that either. My middle son always tells me that worry doesn't help anythingor stop anything from happening. I know that he's right. Actually, he and his family live in New Jersey and will get more of the storm then we will.* IT SOUNDS LIKE YOUR MIDDLE SON IS A BRIGHT PERSON. YOU MIGHT WANT TO TAKE SOME ADVICE FROM HIM BECAUSE WORRYING CAN DO NOTHING FOR YOU BUT TO JUST MAKE YOU UPSET. I ALSO HAVE A HOME IN PA AS YOU ALREADY KNOW AND IF SOMETHING HAPPENS TO IT WELL AT LEAST I'M NOT IN IT AND NITHER ARE MY FAMILY. INSURANCE IS WHAT IS NEEDED AND I HAVE IT SO I JUST CAN'T WORRY ABOUT IT. ** *You take care, and let me know how you're doing. I do keep you in my prayers and think of you often. Were you able to get to PA this year?* THANK YOU FOR YOUR PRAYERS. YES WE DID GO UP TO PA THIS PAST SUMMER. IT WAS A LITTLE DIFFICULT BECAUSE WE MUST DRIVE ALL THE WAY UP THERE. WE SPEND TWO NIGHTS OUT AT MOTELS BECAUSE I RAISE CANARIES AND HAVE ABOUT TEN OF THEM RIGHT NOW. I HAD MORE THEN FIFTY SEVERAL YEARS AGO BUT IT WAS TO DIFFICULT TO MANAGE ALL OF THEM. I HAVE A LOT OF FRIENDS THAT ARE ALSO INTO CANARIES SO I WAS ABLE TO FINF THEM VERY GOOD HOMES. I ALSO HAVE A BEAUTIFUL DOG THAT I RESCUED FROM A KILL SHELTER FIVE YEARS AGO. I ALSO HAD TO MAKE ARRAINGMENTS FOR MY DIALYSIS TREATMENTS, AND THERE IS A DIALYSIS CLINIC IN A TOWN CALLED HONESDALE PA ABOUT TWENTY FIVE MILES FROM WHERE I LIVE. ** *18's to you,* *Millie* AND 18'S TO YOU AS WELL. Marty -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at
Re: [CMLHope] Why are my posts not coming through?
Dear Susan, If you should ever need this new drug then at least you know about it. However, I hope that you can just continue to be off all drugs and do well. Susan, you are a miracle! [?] 18's Marty On Sat, Oct 27, 2012 at 4:35 PM, Susan Zimmerman rszim0...@aol.com wrote: Thank you Marty for the article on both new drugs. My oncologist told me bosutinib was for something else altogether and he certainly never heard of the newest one either. Makes me think I need to change docs. He's never used anything except gleevec and sprycel. I'm the one still off all meds, and when or if I need it I choose tasigna or one of the two new onesdue to unusual bleeding. We'll see! Think I'll call for my doc's e-mail on Monday and send your article to him. Thanks again. 18's to you, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Oct 27, 2012 2:54 pm Subject: Re: [CMLHope] Why are my posts not coming through? Hi Millie, As you can see your post to me did come through. Thank you for your reply. I would like to answer your questions and comments so I will write in between your lines in CAPS. On Sat, Oct 27, 2012 at 12:13 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Marty.Please let me know if this post gets through to you. I received your message about the new drug that's out, and was going to write last night and thank you for sending out the information, but got tired, shut down, and went to bed. I've been in a lot of pain lately, and laying down seems to help.* YES I KNOW ABOUT ALL OF THE PAIN YOUR HAVING, AND I AM REALLY SORRY TO HEAR THAT. I PRAY THAT IT WILL EASE UP ON YOU. I ALSO HAVE SOME TERRIBLE PAIN IN MY BACK AND JUST LIKE YOU I HAVE TO LAY DOWN IN BED TO EASE IT. I SOMETIMES USE A HEATING PAD AND IT WORKS BUT ONLY TEMPORARILY. I EVEN WENT TO A MASSAGE THERIPIST AND THAT SEEMED TO HELP BUT JUST TEMPORARILY AS WELL. I TRY NOT TO TAKE ANY PAIN MEDICATION BECAUSE OF MY KIDNEY FAILURE AND IT WOULD INTERFERE WITH MY DIALYSIS TREATMENTS * I was using a pain patch (Lidocaine) and stopped as when I took it off a couple of weeks ago, there was blood on the patch. My cardiologist said that it was probably because of my thinning skin.* MILLIE, WHY DON'T YOU TRY SOMETHING CALLED BAG BALM ON THE SKIN THAT IS BLEEDING. JUST DON'T PUT ANYTHING ON IT UNTIL IT STARTS TO HEAL. BAG BALM IS VERY GREASY SO NOTHING WILL BE ABLE TO STICK TO IT. IT'S ORIGINAL USE WAS FOR COWS UTTERS ESPECIALLY IN THE WINTER WHEN THEY ARE CHAPPED BUT IT REALLY WORKS WELL FOR ANY SKIN PROBLEMS. IT COMES IN TWO SIZES. MAKE SURE TO BUY THE SMALL SIZE BECAUSE IT WILL LAST FOREVER. JUST A DAB WILL DO YOU AS THEY SAY. IT COMES IN A GREEN SQUARE CAN AND CAN PROBABLY BE PURCHASED AT SOME OF THE LARGE DRUG CHAINS LIKE CVS OR WALGREENS. * I didn't use them all of the time, but maybe once or twice a week. I may try it again when it is all healed. Don't know yet! At any rate, trying to control the pain is difficult and I don't like to take a lot of the Vicoden, so limit myself to once or twice a day. * ** *I hope that this finds you doing okay. I know that you go through a lot and that you are a very strong person.* ACTUALLY MILLIE, ANYONE THAT HAS TO GO THROUGH ANYTHING LIKE YOU OR ME IS AUTOMATICALLY A STRONG PERSON. WE DIDN'T ASK TO BE SICK BUT NOW THAT WE ARE WE JUST HAVE TO FIND WAYS TO BE ABLE TO DEAL WITH IT. * I think of you when I'm hurting and know it's nothing compared to what you have to deal with. You are always here for all of us, and I know you are appreciated by all.* MILLIE, I AM NO DIFFERENT FROM YOU OR ANYONE ELSE. WE JUST HAVE TO DO WHATEVER WE CAN TO JUST KEEP ON GOING. AGAIN I AM VERY SORRY TO HEAR ABOUT YOUR PAIN. I HOPE THAT IT WILL GET BETTER REAL SOON. ** *We have a bad storm headed out way, and it looks like the whole state of PA will be involved. I'm only hoping that it won't last to long and not cause a lot of damage. I worry about the trees coming down on the house, but there's nothing I can do about that either. My middle son always tells me that worry doesn't help anythingor stop anything from happening. I know that he's right. Actually, he and his family live in New Jersey and will get more of the storm then we will.* IT SOUNDS LIKE YOUR MIDDLE SON IS A BRIGHT PERSON. YOU MIGHT WANT TO TAKE SOME ADVICE FROM HIM BECAUSE WORRYING CAN DO NOTHING FOR YOU BUT TO JUST MAKE YOU UPSET. I ALSO HAVE A HOME IN PA AS YOU ALREADY KNOW AND IF SOMETHING HAPPENS TO IT WELL AT LEAST I'M NOT IN IT AND NITHER ARE MY FAMILY. INSURANCE IS WHAT IS NEEDED AND I HAVE IT SO I JUST CAN'T WORRY ABOUT IT. ** *You take care, and let me know how you're doing. I do keep you
Re: [CMLHope] Why are my posts not coming through?
Hi Millie, I think it is cruel to abandon any pets, especially birds. Once they are domesticated and let out in the wild they become pray for other animals. If they had dark colors on their wings then perhaps they were not Canaries but Finches. I hope that you start feeling better real soon 18's Marty On Sat, Oct 27, 2012 at 5:59 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi MartyThank you for answering so soon. I know that there are times when I don't receive anything from cmlhope and wonder why, but people aren't always on, and aren't writing, but it only takes a few moments, when you have problems, and someone is there to listen. That gives me a good feeling.* ** *I love canaries. Years ago, we had lots of wild ones here, but was told that they came from someone who raised them and let them go, so they developed in the wild. Thinking back, I believe they had some dark colors on their wings. In the winter, I love to watch the wild birds and we feed them. I want to put a feeder out so that I can watch them from inside the house. I have to put it up high though as people have been dropping off cats lately, and I try to take care of them too. I can't have them in the house, but my youngest son, Chris, feeds them and provides shelter for them. We only have two, but I don't understand how people can drop off pets that they no longer want. We do the best we can for them. The one was wild when his Mother dropped him here about a year ago. He is still shy, but getting better all of the time.. The other was a house cat as she wants to come inDue to allergies, I can't have her in. There are plenty of barns in the area and so they can go there. The farmers love having cats in the barn to catch critters. * ** *Glad that you were in PA for a while this year. Yes, it's a difficult drive. We had some very warm days this year. I know where Honesdale is. Don't know that I've been there though. If they have a quilt shop near by, then I have. :I think I know where most of them are. I can't go to them with my limitations anymore. We have one in our small town, and she makes it easy for me to visit her shop when I'm up to it. She is a fellow member of our Quilt Guildand very nice. I believe I have enough projects to keep me going for a long time though, so need very little.* ** *You take care, and remember, anytime you want to talk, I'm here to listen.* *Thanks for getting back to me so soon.* *Many hugs (I think they help)* *Millie* -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] insurance
Just so everyone knows. Sometimes insurance may be difficult to deal with. It is up to you to go after what you should be awarded. When I had my bone marrow transplant almost 23 years ago my insurance company decided to only pay 15% of my bills. Their reasoning was that I was given only a 15% chance of survival so that was what they were going to pay. Then there were times that I would get chemothrepy and they would pay different amounts for the exact same procedure. I had a stack of bills that were over two inches thick, and in total they came out to be one million eight hundred thousand dollars that I owed. I would always call my creditors and tell them that there was no way that I could ever pay this off. Some agreed to accept what little my insurance company would pay them while some would eventually write it off but there were others that wanted me to pay them the whole amount. I would never ignoor any bills and those that wanted full payment even though there was no way that I could ever pay them, they still insisted. I told each one of them that I was willing to pay them $5.00 a month. There were about a dozen of them and they had no choice to accept my offer to them. Since I could not work and I was on disability the payments to me were about $60. that I was sending to them at $5.00 a month I did add something in that was a condition of my payments to them. Each time that I would pay them they had to send me a statement of what I had already paid and what my balence was. They had no other choice and then came my monthly payments and their statemenet. About a year had passed and they decided that it was costing them more to keep on doing this and most of them demanded the full payment. At the time I had to wear a surgical mask and gloves whenever I left my home. I went to court representing myself and sued them for breach of contract, and won. As it ended up the judge looked at me with that mask and gloves and told their representitives, how could you make this man in his condition come to court, and then ruled in my favor. What this meant was that I was not liable for any future payments and they had to honor his judgement. All of this proves just how some insurance companies try to intimadate you if you are not ready to stand up for yourselves. 18's Marty On Wed, Nov 7, 2012 at 8:14 AM, robert goodrich cinem...@yahoo.com wrote: thanks for the insurance answers richard and greenie,i will look into humana of florida -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope]
Everyone that is currently using Gleevec... I have enclosed a web site that describes when the earliest Gleevec would come out of patent. There is also a field that you can put your email adderss in to in order to possibly get some kind of a discount. I am not sure about this so do it at your own discretion. http://leukemia.emedtv.com/gleevec/generic-gleevec.html 18's Marty -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope]
Hi Pat, If you read the article it says When Will Generic Gleevec Be Available? The first patent for Gleevec *expires in July 2015*. This is the earliest predictable date that a generic version could become available. So, the article from Novartis is correct, and so is the website I had enclosed. A story about the progress of Gleevec... When Dr. Druker first discovered STI-571 he was trying to find a drug company that would make it in quantity. It seemed that no one was willing to do it. He finally was able to get Novartis to start making it but not yet in quantity. If you remember a man, Zavie Miller, he was one of the first few to get into a trial with STI-571. Both of us had contacted Novartis and told them that if they started making it available we would make sure that the company would be funded. There was a CML site on the internet and we both asked that people buy Novartis stock. At the time the stock was selling at $1,200 a share but the American Registary shares were at $20 a share. All of a sudden everyone started buying those shares and it brought millions into the company. Then came the FDA and everyone started writing in letters and STI-571 was approved in less then one and a half years, and it's name became Gleevec. Take into consideration that it usually takes the FDA about ten years to approve something. I bought a lot of shares at the time for $20 each and it is now hovering around $60.24 per share. I never sold any of this and intend to keep it because I support that company. Most of the people that also purchased it still have every share they first bought because of the support thay show for Novartis. I also want you to understand that I am not on Gleevec or any other TKI because I had a bone marrow transplant almost 23 years ago. However, I always try to support anything that can help CML, and Novartis is doing exactly that. I just wish they would take it easy on the prices that they charge for their TKI's. That is the only peeve I have with the company. Maybe when the patient expires and generics become available the prices will drop so that people in need of it can afford it and live their lives without worrying about getting it to help keep them alive. Please look at the stock, and what it is doing now. http://finance.yahoo.com/q?s=NVS 18's Marty On Sat, Nov 10, 2012 at 12:11 AM, Pat Elliott pfemail...@gmail.com wrote: Hi Marty- ** ** Thank you, that’s quite interesting but I’m not sure I believe this. It states the patent will expire in 2021 (not true) and even if it did expire then, why would they need an email address now? Novartis did an investor’s presentation this week in Boston in which they outlined their plans for both Gleevec and Tasigna. According to their presentation Gleevec will come off patent in the US in 2015 and in Europe in 2016. The US government patent website also says 2015. Yes, I am one of the many people who is watching this date very closely and looking forward to the price drop! Here is the link to the presentation. See page 16. http://www.novartis.com/downloads/investors/event-calendar/2012/8-strategy-for-growth.pdf The report is also interesting in outlining their strategies for moving patients off Gleevec and on Tasigna to retain market share and profitability. There have been some news articles about this recently as well. ** ** Best, Pat Elliott CML patient and patient advocate ** ** *From:* cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] *On Behalf Of *Marty Gartenberg *Sent:* Friday, November 09, 2012 9:36 PM *To:* CMLHope@googlegroups.com *Subject:* [CMLHope] ** ** Everyone that is currently using Gleevec... I have enclosed a web site that describes when the earliest Gleevec would come out of patent. There is also a field that you can put your email adderss in to in order to possibly get some kind of a discount. I am not sure about this so do it at your own discretion. http://leukemia.emedtv.com/gleevec/generic-gleevec.html 18's Marty -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com
Re: [CMLHope] 6 month Check up
Hi Suzieq, You know that my prayers are with you. I wish you the very best and have a very *HEALTHY *and *HAPPY *Thanksgiving. 18's Marty On Tue, Nov 20, 2012 at 2:32 PM, Suzieq sheila.a.wat...@gmail.com wrote: Hello fellow CML Survivors! Having my six month check up tomorrow and will be important, I think, since it has been almost a year since going from 400 to 200mgs. of Gleevec. Hopefully another none detected will return on the BCR-ABL test. Prayers and thoughts will be appreciated. Appointment will be at 9:30 for labs and 10:30 for Onc/Hem. Keep Looking Up, Suzieq -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] 9 Years and counting with CML
Hi Cammie, Having CML and being depressed are one in the same. That is if you let it be that way. The way I look at it is to picture a child's See-Saw and your on one side of it with all of your problems resting on your shoulders. This brings you down. Now start taking some of the good things in your life. Now, take your Grand Daughter as well as your full scolarship toward your collage education, your excellent grades and every other good thing in your life and place all of them on the other side. What happens? Well, what you thought was weighing you down only proves to be what is on that other side just bringing you up. Yes Cammie, you go on and lead a fruitful life. Enjoy that shining beacon (Your Grand Daughter) and all of the other good things... Any time that I end a post I will include two numbers. 18 which is a symbol for life. 18's Cammie. Marty On Wed, Nov 21, 2012 at 5:24 PM, Cammie wannabni...@yahoo.com wrote: Hi Cammie from MA, I was dx Oct 2003. I'm still on 400mg of Gleevic and take Protonox for the GI problems. My counts have wavered up and down over the last 9 years. My last visit at Dana Farber my onc, Dr. Soiffer told me that my counts were up still. He's waiting for my latest results to come back to see if we need to make changes. I hope not. My side effects have been pretty consistent-weight gain, bone pain, breathing problems, and edema in my left leg. I did have a DVT//PE in 2006 that totally ruined that year. I had to retire from my very physical job in 2008 and was very depressed. I decided to do something with my life, returned to community college and graduated with high honors. My illness has been a blessing in disguise. By having CML and my former career, along with my life experience, made for awesome essays. I received a full scholarship to get my bachelors and started this past September. I love school, however this fall all I have been is sick. Colds, coughs, aches, pains-you name it, I've been dealing with it. It's like being back in kindergarten where you catch everything anyone else has. I've taken to wearing a mask when I'm cooped up with even slightly ill people. All in all, these past 9 years have been a blessing. I now have a one-month old grand daughter who is the absolute light of my life. I intend to live a long and fruitful life and enjoy every moment I have been given. Cammie Dx 2003 Gleevic 400mg -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] A girls last hope to beat Leukemia
Hi Millie, I'm so sorry to hear about all of your problems especially about all the pain that your in. Hopefully they will find the cause and will be able to treat you. As far as all the things you must do for the holidays, well, you know the old saying.. Take one day at a time Whatever you can do is what you can do. If you don't get everything done then that is what you can't do and at least you did what you were able to do. That is the way I see it. I'm not sure if you know that I am on dialysis and I just can't do what I was able to do since being on it. I was very handy, and I can still do some of the things that I was able to do but not all of what I would like to do. So, we just have to live with what we can do. You know the alternative as I do, so we just have to accept what ever we can still do and thank GOD for that. Millie, I wish you a very happy and healthy holiday season. You also be sure to take good care of yourself. I am glad to hear about the St. Luke's Hospital Care system taking good care of you. You just hang in there and hopefully you will regain your strength. 18's Marty On Sun, Dec 9, 2012 at 11:00 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi MartyThanks for sending the article. I always wish for a cure, especially for our children. I've lived my life and doubt this old body would be able to take the cure, but the kids need hope and have their whole lives ahead of them. * ** *How are you doing these days? I hope that you are enjoying this Holiday Season and that you're feeling well. I'm on home care from our local hospital, which is part of the St. Luke's system from Bethlehem, PA. They are taking good care of me, and, hopefully, I'll be able to get my strength back and do for myself soon. They are giving me lots of pain medication and that masks the pain that started all of this, but they still don't know why I was in such pain. All I know is that I don't want it back. I have so much to do to get ready for the holidays coming and wonder how much I'll be able to do. I'm determined to do what I usually do, but it probably isn't realistic...just wishful thinking on my part. * ** *Take good care of yourself and I wish you and yours the best.* ** *18's* *Millie* -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHoperaindeer.gif
Re: [CMLHope] A girls last hope to beat Leukemia
Hi Angie, I like your analogy[?] Hugs. 18's Marty On Sun, Dec 9, 2012 at 11:13 PM, ANGELYN ESDERS esd...@rogers.com wrote: Simply amazing! Thanks for sharing this article. Angie in Canada What lies behind us and what lies before us are tiny matters compared to what lies within us Angie *From:* Marty Gartenberg wa2...@gmail.com *To:* CMLHope@googlegroups.com *Sent:* Sunday, December 9, 2012 10:38:43 PM *Subject:* [CMLHope] A girls last hope to beat Leukemia I would like everyone to read this. A girls last hope to beat Leukemia. It was actually ALL but there is also something going on about other types of Leukemia. From what I read there is a lot of progress that may in the very near future make Leukemia a thing of the past. http://www.nytimes.com/2012/12/10/health/a-breakthrough-against-leukemia-using-altered-t-cells.html?_r=0 18's Marty -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope35D.gif
Re: [CMLHope] why are you on dialysis?
Hi Jeanie, I'm not the warrior here because I have already gone through all of this. If anyone is a warrior here it is you and Millie and all the rest of the people with this disease. You are fighting and winning, and that is what this is all about isn't it? I read through all of the posts here and on other sites as well, and every one of them are warriors. I had to start on dialysis a little over one year ago. My kidneys have been failing for several years because of several factors. One being all of the radiation and chemotherapy I had almost twenty three years ago for my bone marrow transplant. Also as ageing comes about your kidneys become less effective. Not that I am an old fart but non the less it just happens. Who really knows, it could have been caused by many things but that is what I have, and I will just have to deal with it just as all of you have to deal with your problems. The trick to dealing with anything is to just accept it and simply go on with your life. No one ever said that life is a bowl of cherries. What actually brought my kidney failure was that my community puts down mulch around the houses here and there are always some bags left over that they leave in front of the garages. Since I have some property behind my home I decided to take and put that extra mulch there. Two days later I had a 104 fever and had to go to the hospital. I had double pneumonia and had to be in the hospital for three weeks. It was at that time my kidneys said good bye and I was started on dialysis while in the hospital. Maybe it also had something to do with my job and the fact that when I lived in Staten Island and there was an explosion of a benzine storage tank across the Author Kill River in New Jersey that carried burnt benzine across the water way and deposited it om my house and cars. About two months after I was diagnosed with CML, and I later found out that several of my neighbors were also catering to this disease called CML. I am now on three waiting kidney transplant lists just waiting for something to come about. I also have two potential live donors but even with that it is still a very complicated waiting game. They may or may not be a match for me but it takes a lot of time to get everything in order. One of my problems is that I was born with O+ blood type, and when I had my bone marrow transplant my donor had B+ blood type. So, now my blood type is B+. I am what is called a Chimera. Two different people living in my body. I always try to look at some humor in my life, it just keeps me going I guess... So, what will happen if and when I get that kidney transplant? Do you think there will be enough room in me for another person living inside of me or am I just going to explode? [?][?][?] I would like to wish you and everyone here a very HEALTHY and happy holiday season. May your upcoming year be better then it has been. I also add my usual 18's to everyone. Marty On Mon, Dec 10, 2012 at 4:43 PM, icandoall...@aol.com wrote: ** Happy Holidays Marty, Can you tell us again about your dialysis and why you are on it? Good luck to you in the coming year; you are truly a warrior; and Millie also. Jeanie3 In a message dated 12/10/2012 11:10:40 A.M. Eastern Standard Time, ho...@ptd.net writes: *Hello again, Marty,* ** *I'm taking a short break from decorating for the season. I am about done. It takes me a while to do little things, but in the end, I accomplish it.* ** *Yes, I know that you're on dialysis and are a very strong individual. I have always tried to be, but we all have our days when it doesn't work. I always say that I kick myself in the rear when I get depressed, but it's getting impossible for my legs to do that.:))) I do try very hard to look at the bright side of life.* ** *Today I have work to finish up for our quilt guild, so I plan on doing that. I just keep plugging along like the turtle and in the end surprise myself at what I can do.* ** *You have a wonderful day and know that you are admired by many CMLers. Your attitude is always uplifting.* *Millie* -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of
Re: [CMLHope] why are you on dialysis?
Hi Susan, I have also tried doing that but it didn't work. It is called peritoneal dialysis and a catheter is placed into your abdomen and you infuse special bags of glucose based dialyses. It was able to go into but it didn't come out and I had to get another round of surgery to remove it. My abdomen is full of scars from all of that because they tried doing it three times but it just didn't work. Since I also had my spleen removed because of having CML that also left a big scar in my abdomen so that was probably another problem for not being able to do the peritoneal dialysis at home. Believe me if is out there then I am going to find out about it. I even tried stem cell therapy to try and help my kidneys, but it also didn't work. However, what it did do was to get rid of my diabetes. I used to be on insulin but now I don't need any more of that, and my sugar levels are around 98 to about 110 in the mornings. Since insurance didn't cover it I had to pay, and it was very expensive to say the least. If I do get a kidney transplant I will have to be on immunosurpressive drugs for the rest of my life and they usually but not always cause diabetes. So, that's about it and I am just like Pop Eye the sailor man... I am what I am. It's all about attitude and most of all, hope. I would like you to read something that was posted by someone about me. Go to: http://talkbloodcancer.com/content/window-martin-gartenberg Or simply Google my name Marty Gartenberg and look for something called The Window. I wrote this over twenty years ago and I have seen it plagiarized several times. Some were not very nice but I can't stop people from doing what they do... 18's and have a wonderful and most of all a very HEALTHY and happy holiday season. And by the way, GOD has blessed me. Out of transplant going on 23 years this May 21st. It was actually on my 45th birthday that I received my bone marrow transplant, and I'm still here. Some birthday gift, huh? However, this really isn't about me because as I previously stated, I am finished with my CML, it is about all of you. I know what each and every one of you is going through and it breaks my heart just because I know. But you know something? You are also blessed by GOD because your still here. Even though you have some difficulties in your life from having to take these TKI's you are also here as well. How I would have wished that they would have been there for me at the time rather having to go through that bone marrow transplant... Water under the bridge, and I still go on. Again, 18's Marty On Tue, Dec 11, 2012 at 10:19 AM, Susan Zimmerman rszim0...@aol.com wrote: It’s always so good and uplifting to hear from you, Marty!!! God bless. Hope you can take dialysis in your home as the new wave of care is happening. My friend does that and she is so much happier because of it. It works while you sleep during the night. ** ** 18’s, Susan zimmerman ** ** *From:* cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] *On Behalf Of *Marty Gartenberg *Sent:* Tuesday, December 11, 2012 9:34 AM *To:* cmlhope@googlegroups.com *Subject:* Re: [CMLHope] why are you on dialysis? ** ** Hi Jeanie, I'm not the warrior here because I have already gone through all of this. If anyone is a warrior here it is you and Millie and all the rest of the people with this disease. You are fighting and winning, and that is what this is all about isn't it? I read through all of the posts here and on other sites as well, and every one of them are warriors. I had to start on dialysis a little over one year ago. My kidneys have been failing for several years because of several factors. One being all of the radiation and chemotherapy I had almost twenty three years ago for my bone marrow transplant. Also as ageing comes about your kidneys become less effective. Not that I am an old fart but non the less it just happens. Who really knows, it could have been caused by many things but that is what I have, and I will just have to deal with it just as all of you have to deal with your problems. The trick to dealing with anything is to just accept it and simply go on with your life. No one ever said that life is a bowl of cherries. What actually brought my kidney failure was that my community puts down mulch around the houses here and there are always some bags left over that they leave in front of the garages. Since I have some property behind my home I decided to take and put that extra mulch there. Two days later I had a 104 fever and had to go to the hospital. I had double pneumonia and had to be in the hospital for three weeks. It was at that time my kidneys said good bye and I was started on dialysis while in the hospital. Maybe it also had something to do with my job and the fact that when I lived in Staten Island and there was an explosion of a benzine storage tank across the Author Kill River in New Jersey
Re: [CMLHope] BCR-ABL Results
Hi Suzieq, I would also like to wish you a very healthy and happy holiday season. It looks like your doing real well and it should continue. Maybe in the near future if your doctor thinks you could get off of it compleatly or just drop the dose to 100. I would suggest that you run this by a CML speciaist like Dr. Brian Druker. He always returnes emails. So, it gives me great pleasure to say that GOD has, and still continues to bless you. As always, 18's Marty On Wed, Dec 12, 2012 at 1:21 PM, Suzieq sheila.a.wat...@gmail.com wrote: Good Day to all my fellow CML Survivors: I finally received my test results from my last visit (November 21st) with my Onc./Hem. in St. Louis. I guess because of the holidays, it took a while getting to me. (smile) I am still None Detected all across the board! HALLELUJAH I have tested this now each time since July 12, 2010. And, this time I thought it would be most important since it was 1 year since cutting my Gleevec from the 400mgs I had been taking since day one (Feb. '04) in half to 200mgs. So, it is working just fine! My body seems to have adjusted to the 200mgs. and I don't have any problems with taking it as I did with the 400. I am still having a lot of joint pain, but not a whole lot I can do about it. I did talk with her about how I think we are going to have to address this within the next year. I told her that maybe they could send me to some doctor that specializes in Arthritis. Well, just wanted to share this. I want to also wish every one a very Merry Christmas Happy Holidays. God bless you one and all throughout the New Year, too! Love Keep Looking Up, Suzieq -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] why are you on dialysis?
Hi Jeanie, I just want to comment on something you wrote. but then I wonder what the drugs are doing to my body. Well, the leukemia kills, so better to just face it head on and live with it Jeanie, now your getting the idea. No matter what your going through your still alive to go through it... I really feel badly for you loosing your hubby and at such a relatively young age. I'm sure that it was and still is very difficult for you. When I was first diagnoised with CML I thanked GOD that I got it rather then my wife or children. I could live with me having it but not my wife or children. Take care of yourself and I wish you to have a very healthy and happy holiday season. 18's Marty On Thu, Dec 13, 2012 at 4:17 PM, icandoall...@aol.com wrote: ** Hi Marty and thanks so much; you sure sound like a warrior to me. I love your response; just face it and try the best to live with it. In Jan I will start on my 9th year of being a CML warrior. Gleevec and Tasigna failed me and I am now on Sprcel. It is a struggle every day for me to take these chemo drugs. I want to look at like you do, and most days I do, but then I wonder what the drugs are doing to my body. Well, the leukemia kills, so better to just face it head on and live with it I lost my hubby when he was only 62 from heart disease caused by diabetes. He struggled many years with it, having a by pass when he was 52. His heart just finally gave out. He had the surgery where they split you open through the breast bone and take veins out of your legs to repair you clogged veins. Christmas is almost here and I love the season. So Merry Christmas to you and a Happy New Year. Jeanie3 In a message dated 12/11/2012 9:34:24 A.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Jeanie, I'm not the warrior here because I have already gone through all of this. If anyone is a warrior here it is you and Millie and all the rest of the people with this disease. You are fighting and winning, and that is what this is all about isn't it? I read through all of the posts here and on other sites as well, and every one of them are warriors. I had to start on dialysis a little over one year ago. My kidneys have been failing for several years because of several factors. One being all of the radiation and chemotherapy I had almost twenty three years ago for my bone marrow transplant. Also as ageing comes about your kidneys become less effective. Not that I am an old fart but non the less it just happens. Who really knows, it could have been caused by many things but that is what I have, and I will just have to deal with it just as all of you have to deal with your problems. The trick to dealing with anything is to just accept it and simply go on with your life. No one ever said that life is a bowl of cherries. What actually brought my kidney failure was that my community puts down mulch around the houses here and there are always some bags left over that they leave in front of the garages. Since I have some property behind my home I decided to take and put that extra mulch there. Two days later I had a 104 fever and had to go to the hospital. I had double pneumonia and had to be in the hospital for three weeks. It was at that time my kidneys said good bye and I was started on dialysis while in the hospital. Maybe it also had something to do with my job and the fact that when I lived in Staten Island and there was an explosion of a benzine storage tank across the Author Kill River in New Jersey that carried burnt benzine across the water way and deposited it om my house and cars. About two months after I was diagnosed with CML, and I later found out that several of my neighbors were also catering to this disease called CML. I am now on three waiting kidney transplant lists just waiting for something to come about. I also have two potential live donors but even with that it is still a very complicated waiting game. They may or may not be a match for me but it takes a lot of time to get everything in order. One of my problems is that I was born with O+ blood type, and when I had my bone marrow transplant my donor had B+ blood type. So, now my blood type is B+. I am what is called a Chimera. Two different people living in my body. I always try to look at some humor in my life, it just keeps me going I guess... So, what will happen if and when I get that kidney transplant? Do you think there will be enough room in me for another person living inside of me or am I just going to explode? [?][?][?] I would like to wish you and everyone here a very HEALTHY and happy holiday season. May your upcoming year be better then it has been. I also add my usual 18's to everyone. Marty On Mon, Dec 10, 2012 at 4:43 PM, icandoall...@aol.com wrote: ** Happy Holidays Marty, Can you tell us again about your dialysis and why you are on it? Good luck to you in the coming year; you are truly a
[CMLHope] Depression
When someone has CML or any other type of cancer, then they also have a certain amount of depression as well. Some more then others but it is just an emotion that we as humans all share when we are ill. It doesn't necessarily have to be from the Gleevec or any other type of TKI's, but the fact that we have cancer. I don't take any TKI's because I had a bone marrow transplant about 23 years ago this coming May. In all of this time I have learned there are several kinds of emotions that we go through when we have cancer. The first is disbelief, then we go through, let me get another opinion because this can't be happening to me. Most, but not all go through, why is GOD punising me. Then some sort of acceptance, but hope that they will get up the next morning and find that it was all a big mistake. Then finally once they realize that they in fact do have cancer, they go into a depression. Now this may not necessarily happen in this order, but for the most part, all or most of these emotions are just our way of trying to deal with this. Your mind is a powerful tool and the way you use it can make a big difference. I always say that your mind can try to help your body. I'm not saying that having a good outlook on life will be able to cure you of this or any other disease but your mind can work in ways that can help you. If you are depressed most of the time your body will react as if your disease is just eating away at you. If your attitude is such that you feel good about yourself in spite of what you may be going through then you will become less depressed, and maybe not even feeling any depression at all. Believe me I know all about this, When I had my bone marrow transplant I had to live in a six by nine plastic bubble in a hospital for just about seven months. However, I learned to control my depression and you can't imagin how much my mind helped my body heal in all of that time. Depression can really hurt you if you let it, while having less can actually help you. It has to deal with some hormones that are produced in your brain. One being Endorphine. If you know anything about marathon races when the runners are finished with their run they actually feel a natural high. This is because of the production of Endorphines in their brain. I knew the president of a group in New York City called the Road Runners. His name was Fred Lebow and he developed brain cancer. It was a very agressive cancer with a longevity of only a few months at best. Every time Fred received a radiation treatment he would go up to the roof of the hospital and run around it. Fred lived for about seven years, and when he died they found that all of his brain tumors were not even there anymore. They said that he died of all the radiation treatments. It is a sad story but it did show how someones attitude, and in Fred's case how he was able to sustain himself for so long. Everyone may be different but cancer doesn't care who you are, so in that sense we are all the same. I always end any of my posts with two numbers 18. I'm sure that you have already seen me do this. These two numbers symbolize life. 18's Marty -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] PCRU
Hi Marcie, Fighting Leukemia is a tough battle, but as you have proved, it can be done. You now have your Christmas Present called PCRU[?] I wish you many more years of HEALTH and HAPPINESS. 18's (stands for life) Marty On Fri, Dec 21, 2012 at 1:05 PM, margoo...@aol.com wrote: Finally - PCRU after 3 3/4 years on Gleevec! Thanks to all of you for your support, friendship and responses to my many questions. I wish all of you a Merry Christmas and a New Year filled with all wonderful things. Marcie -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope360.gif
Re: [CMLHope] PCRU
Hi Marcie, l'chaim, another way to say 18's. Take care of yourself and enjoy another happy and healthy New Years. 18's l'chaim Marty On Sat, Dec 22, 2012 at 11:20 AM, margoo...@aol.com wrote: l'chaim -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Depression
Hi Jeanie, welcome back. Yes Jeanie, GOD has given you these past nine years, as he has also given me the past twenty three years, but GOD helps those that help themselves. It is also you that helps you have these past nine years, and your going to help yourself have many more. Merry Christmas and a Happy and Healthy New Year. You end with the word Blessings I end with those two numbers 18 We are blessed with life. 18's Marty On Mon, Dec 24, 2012 at 10:48 AM, Jeanie icandoall...@aol.com wrote: I am back from cruise. Largest ship on the seas: the allure . Had a great time but tired. Lots of walking. Lots of eating.A great vacation with family. Jan my 9 th year of fighting cml. glad that God has given me these years. Merry Christmas and happy new year to all. Blessings Jeanie Sent from my iPhone On Dec 20, 2012, at 7:23 AM, C.M. Houtz ho...@ptd.net wrote: *I've heard of the same thing happening with a friend, who almost died from drinking to much fluid. I guess we have to try to strike a happy medium and hope that it works. That's what I'm doingThanks...Millie* -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Santa and Sarah
My eyes are full of tears and there is an apple stuck in my throat. This reminds me of something that happened a very long time ago. Unfortunately it didn't have such a happy ending. Here is something with a happy ending I would like you to watch. 18's (Symbol for life) Marty http://www.dailymotion.com/video/x3upv7_gestodeamor_news#.UNzTyeSADV8 On Wed, Dec 26, 2012 at 2:51 PM, DAWN RODEGHIER drodegh...@sbcglobal.netwrote: *To all my cml fighters: This is one day late getting out but I was busy like the rest of you warriors and time got away. But here is a good reminder to keep your hopes high!* ** *Hope all had a wonderful Christmas, I know we all know what the day really stands for! Jim Rodeghier* ** ** ** *What a beautiful story.! Get the tissues ready. SANTA AND SARAH Three years ago, a little boy and his grandmother came to see Santa at the McAllister Mall in Saint John . The child climbed up on his lap, holding a picture of a little girl. Who is this? asked Santa, smiling. Your friend? Yes, Santa,' he replied. My sister, Sarah, who is very sick, he said sadly. Santa glanced over at the grandmother who was waiting nearby, and saw her dabbing her eyes with a tissue. She wanted to come with me to see you, oh, so very much, Santa! the child exclaimed. She misses you, he added softly. Santa tried to be cheerful and encouraged a smile to the boy's face, asking him what he wanted Santa to bring him for Christmas. When they finished their visit, the Grandmother came over to help the child off his lap, and started to say something to Santa, but halted. What is it? Santa asked warmly. Well, I know it's really too much to ask you, Santa, but the old woman began, shooing her grandson over to one of Santa's elves to collect the little gift which Santa gave all his young visitors. The girl in the photograph... my granddaughter well, you see she has leukemia and isn't expected to make it even through the holidays, she said through tear-filled eyes. Is there any way, Santa, any possible way that you could come see Sarah? That's all she's asked for, for Christmas, is to see Santa. Santa blinked and swallowed hard and told the woman to leave information with his elves as to where Sarah was, and he would see what he could do. Santa thought of little else the rest of that afternoon. He knew what he had to do. What if it were MY child lying in that hospital bed, dying, he thought with a sinking heart, This is the least I can do. When Santa finished visiting with all the boys and girls that evening, he retrieved from his helper the name of the hospital where Sarah was staying. He asked the assistant location manager how to get to the Hospital. Why? Rick asked, with a puzzled look on his face. Santa relayed to him the conversation with Sarah's grandmother earlier that day. C'mon.I'll take you there. Rick said softly. Rick drove them to the hospital and came inside with Santa. They found out which room Sarah was in. A pale Rick said, he would wait out in the hall. Santa quietly peeked into the room through the half-closed door and saw little Sarah in the bed. The room was full of what appeared to be her family; there was the Grandmother and the girl's brother he had met earlier that day. A woman whom he guessed was Sarah's mother stood by the bed, gently pushing Sarah's thin hair off her forehead. And another woman who he discovered later was Sarah's aunt, sat in a chair near the bed with a weary sad look on her face. They were talking quietly, and Santa could sense the warmth and closeness of the family, and their love and concern for Sarah. Taking a deep breath, and forcing a smile on his face, Santa entered the room, bellowing a hearty, Ho, Ho, Ho! Santa! shrieked little Sarah, weakly as she tried to escape her bed to run to him IV tubes intact. Santa rushed to her side and gave her a warm hug. A child the tender age of his own son -- 9 years old -- gazed up at him with wonder and excitement. Her skin was pale and her short tresses bore telltale bald patches from the effects of chemotherapy. But, all he saw when he looked at her was a pair of, huge blue eyes. His heart melted, and he had to force himself to choke back tears. Though his eyes were riveted upon Sarah's face, he could hear the gasps and quiet sobbing of the women in the room. As he and Sarah began talking, the family crept quietly to the bedside one by one, squeezing Santa's shoulder or his hand gratefully, whispering Thank you as they gazed sincerely at him with shining eyes. Santa and Sarah talked and talked, and she told him excitedly all the toys she wanted for Christmas, assuring him she'd been a very good girl that year. As their time together dwindled, Santa felt led in his spirit to pray for Sarah, and asked for permission from the girl's mother. She nodded in agreement and the entire family circled around Sarah's bed,
Re: [CMLHope] Santa and Sarah
Hi Again Dawn, The video I sent you first has an advertisement so just ignore it. 18's Marty On Wed, Dec 26, 2012 at 2:51 PM, DAWN RODEGHIER drodegh...@sbcglobal.netwrote: *To all my cml fighters: This is one day late getting out but I was busy like the rest of you warriors and time got away. But here is a good reminder to keep your hopes high!* ** *Hope all had a wonderful Christmas, I know we all know what the day really stands for! Jim Rodeghier* ** ** ** *What a beautiful story.! Get the tissues ready. SANTA AND SARAH Three years ago, a little boy and his grandmother came to see Santa at the McAllister Mall in Saint John . The child climbed up on his lap, holding a picture of a little girl. Who is this? asked Santa, smiling. Your friend? Yes, Santa,' he replied. My sister, Sarah, who is very sick, he said sadly. Santa glanced over at the grandmother who was waiting nearby, and saw her dabbing her eyes with a tissue. She wanted to come with me to see you, oh, so very much, Santa! the child exclaimed. She misses you, he added softly. Santa tried to be cheerful and encouraged a smile to the boy's face, asking him what he wanted Santa to bring him for Christmas. When they finished their visit, the Grandmother came over to help the child off his lap, and started to say something to Santa, but halted. What is it? Santa asked warmly. Well, I know it's really too much to ask you, Santa, but the old woman began, shooing her grandson over to one of Santa's elves to collect the little gift which Santa gave all his young visitors. The girl in the photograph... my granddaughter well, you see she has leukemia and isn't expected to make it even through the holidays, she said through tear-filled eyes. Is there any way, Santa, any possible way that you could come see Sarah? That's all she's asked for, for Christmas, is to see Santa. Santa blinked and swallowed hard and told the woman to leave information with his elves as to where Sarah was, and he would see what he could do. Santa thought of little else the rest of that afternoon. He knew what he had to do. What if it were MY child lying in that hospital bed, dying, he thought with a sinking heart, This is the least I can do. When Santa finished visiting with all the boys and girls that evening, he retrieved from his helper the name of the hospital where Sarah was staying. He asked the assistant location manager how to get to the Hospital. Why? Rick asked, with a puzzled look on his face. Santa relayed to him the conversation with Sarah's grandmother earlier that day. C'mon.I'll take you there. Rick said softly. Rick drove them to the hospital and came inside with Santa. They found out which room Sarah was in. A pale Rick said, he would wait out in the hall. Santa quietly peeked into the room through the half-closed door and saw little Sarah in the bed. The room was full of what appeared to be her family; there was the Grandmother and the girl's brother he had met earlier that day. A woman whom he guessed was Sarah's mother stood by the bed, gently pushing Sarah's thin hair off her forehead. And another woman who he discovered later was Sarah's aunt, sat in a chair near the bed with a weary sad look on her face. They were talking quietly, and Santa could sense the warmth and closeness of the family, and their love and concern for Sarah. Taking a deep breath, and forcing a smile on his face, Santa entered the room, bellowing a hearty, Ho, Ho, Ho! Santa! shrieked little Sarah, weakly as she tried to escape her bed to run to him IV tubes intact. Santa rushed to her side and gave her a warm hug. A child the tender age of his own son -- 9 years old -- gazed up at him with wonder and excitement. Her skin was pale and her short tresses bore telltale bald patches from the effects of chemotherapy. But, all he saw when he looked at her was a pair of, huge blue eyes. His heart melted, and he had to force himself to choke back tears. Though his eyes were riveted upon Sarah's face, he could hear the gasps and quiet sobbing of the women in the room. As he and Sarah began talking, the family crept quietly to the bedside one by one, squeezing Santa's shoulder or his hand gratefully, whispering Thank you as they gazed sincerely at him with shining eyes. Santa and Sarah talked and talked, and she told him excitedly all the toys she wanted for Christmas, assuring him she'd been a very good girl that year. As their time together dwindled, Santa felt led in his spirit to pray for Sarah, and asked for permission from the girl's mother. She nodded in agreement and the entire family circled around Sarah's bed, holding hands. Santa looked intensely at Sarah and asked her if she believed in angels. Oh, yes, Santa... I do! she exclaimed. Well, I'm going to ask angels watch over you. he said. Laying one hand on the child's head, Santa closed his eyes and prayed.
Re: [CMLHope] why are you on dialysis?
Hi Jeanie, You seem to have gone through a lot with everything that happened to you and your husband. From this new year on may you be blessed with things that will make you live life to it's fullest and have some joy in your life. 18's Marty On Tue, Jan 1, 2013 at 4:03 PM, icandoall...@aol.com wrote: ** Thanks Marty, and yes I still miss him a lot. My hubby wasn't real sick; but he just seem to lose a little more of his health each day. He passed away in his sleep very peacefully and that was a great relief. I didn't have to see him dying in a hospital bed or hospice. I thought I wasn't going to make it without him; we were in love ever since high school. But the days passed and I learned to live without him. My children were a great help to me. Happy New to you and yours, Jeanie3 In a message dated 12/13/2012 10:17:39 P.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Jeanie, I just want to comment on something you wrote. but then I wonder what the drugs are doing to my body. Well, the leukemia kills, so better to just face it head on and live with it Jeanie, now your getting the idea. No matter what your going through your still alive to go through it... I really feel badly for you loosing your hubby and at such a relatively young age. I'm sure that it was and still is very difficult for you. When I was first diagnoised with CML I thanked GOD that I got it rather then my wife or children. I could live with me having it but not my wife or children. Take care of yourself and I wish you to have a very healthy and happy holiday season. 18's Marty On Thu, Dec 13, 2012 at 4:17 PM, icandoall...@aol.com wrote: ** Hi Marty and thanks so much; you sure sound like a warrior to me. I love your response; just face it and try the best to live with it. In Jan I will start on my 9th year of being a CML warrior. Gleevec and Tasigna failed me and I am now on Sprcel. It is a struggle every day for me to take these chemo drugs. I want to look at like you do, and most days I do, but then I wonder what the drugs are doing to my body. Well, the leukemia kills, so better to just face it head on and live with it I lost my hubby when he was only 62 from heart disease caused by diabetes. He struggled many years with it, having a by pass when he was 52. His heart just finally gave out. He had the surgery where they split you open through the breast bone and take veins out of your legs to repair you clogged veins. Christmas is almost here and I love the season. So Merry Christmas to you and a Happy New Year. Jeanie3 In a message dated 12/11/2012 9:34:24 A.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Jeanie, I'm not the warrior here because I have already gone through all of this. If anyone is a warrior here it is you and Millie and all the rest of the people with this disease. You are fighting and winning, and that is what this is all about isn't it? I read through all of the posts here and on other sites as well, and every one of them are warriors. I had to start on dialysis a little over one year ago. My kidneys have been failing for several years because of several factors. One being all of the radiation and chemotherapy I had almost twenty three years ago for my bone marrow transplant. Also as ageing comes about your kidneys become less effective. Not that I am an old fart but non the less it just happens. Who really knows, it could have been caused by many things but that is what I have, and I will just have to deal with it just as all of you have to deal with your problems. The trick to dealing with anything is to just accept it and simply go on with your life. No one ever said that life is a bowl of cherries. What actually brought my kidney failure was that my community puts down mulch around the houses here and there are always some bags left over that they leave in front of the garages. Since I have some property behind my home I decided to take and put that extra mulch there. Two days later I had a 104 fever and had to go to the hospital. I had double pneumonia and had to be in the hospital for three weeks. It was at that time my kidneys said good bye and I was started on dialysis while in the hospital. Maybe it also had something to do with my job and the fact that when I lived in Staten Island and there was an explosion of a benzine storage tank across the Author Kill River in New Jersey that carried burnt benzine across the water way and deposited it om my house and cars. About two months after I was diagnosed with CML, and I later found out that several of my neighbors were also catering to this disease called CML. I am now on three waiting kidney transplant lists just waiting for something to come about. I also have two potential live donors but even with that it is still a very complicated waiting game. They may or may not be a match for me but it takes a lot of time to
Re: [CMLHope] Eye bleeds.
Hi Doris-bmt, According to web-md a rare side effect of Gleevec is Retinal Hemorrhage as well as Eye Bleeds. Although I have never been on it, I had a bone marrow transplant almost 23 years ago, I have heard of this happening many times with people taking Gleevec. It usually subsides in a short time with no permement eye damage. What you have here is a trade off. You may have some side effects but your still alive to have these side effects. As long as your getting out of bed every morning and doing what you do then your doing well. You being on Gleevec for the past eleven years proves it. If Gleevec were available when I had CML I would have opted for it rather then having that bone marrow transplant. Not to say that there may be certain people that will need a BMT because it all depends on their circumstances. Even so, I would have still liked to try it... 18's (symbol for life) Marty On Wed, Jan 23, 2013 at 11:17 AM, Dorisbmt doris...@aol.com wrote: I have had eye bleeds but I don't know if gleevec has anything to do with it. I've been on gleevec since 2002. Sent via the Samsung Galaxy S™ II Skyrocket™, an ATT 4G LTE smartphone. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] High blood pressure
HI JEANIE, THERE WAS A TIME THAT I ALSO FELT MY HEART BEATING IN MY ABDOMEN. IT DROVE ME CRAZY UNTIL I HAD AN ULTRASOUND OF MY ABDOMINAL AORTA THERE WAS A SMALL BLOCKAGE THAT WAS TAKEN CARE OF BY WARFERIN. WHICH IS A BLOOD THINNER. 18'S MARTY On Fri, Jan 25, 2013 at 10:59 AM, icandoall...@aol.com wrote: ** Hi Doris, Yes I have had all those symptoms and much more. I never reached remission on Gleevec and had a terrible time until I went on Sprycel. My blood pressure always runs a little high; doc wants me to take BP meds but I have tried them and don't do well on them. The last one I took was Aetenol; gave me heart pains. Have you tried walking and diet. Walking seems to help. A diet low in animal foods, with lots of fish, fruit and veggies may help also. Exercise in moderation is good. One side effect that I had right before my dx was that I could feel my heart beating in my tummy on the right side. It still does, and they don't know why. Good luck and so glad you are in remission. Jeanie3 In a message dated 1/24/2013 11:01:12 A.M. Eastern Standard Time, doris...@aol.com writes: Hi, my name is Doris I don't get on that much but I read often. I'm having trouble with my blood pressure. On gleevec 100mg six a day. Been in remission since 2002. Now my blood pressure out of control. Dr just up my lisinopril to 10mg twice a day with a water pill. The lowest its been so far is156/84.I get dizzy. Light headed and racing heart rate. I totally. Feel weird. And can tell when it spikes. Anyone else having this problems. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] ultrasound of abominal aorta ?
Hi Jeanie, The Warferin did make that beating go away. It wasn't so much the pain just like a very uncomfortable feeling. I think that you should discuss this with your doctor. You should get an ultrasound to see what if anything is going on. 18's Marty On Sat, Jan 26, 2013 at 3:07 PM, icandoall...@aol.com wrote: ** Hi Marty, did the warferin take care of your problem and did the beating in your abdomen go away? I also have pain in that area? Did you have pain? Just wondering if all will go away if that's the problem. Thanks so much. Jeanie3 In a message dated 1/26/2013 10:34:11 A.M. Eastern Standard Time, icandoall...@aol.com writes: Wow! that is good to know. Thanks so much. I will have the ultrasound and see what it shows. Sounds like a good plan. Thanks again, Jeanie3 In a message dated 1/25/2013 3:50:48 P.M. Eastern Standard Time, wa2...@gmail.com writes: HI JEANIE, THERE WAS A TIME THAT I ALSO FELT MY HEART BEATING IN MY ABDOMEN. IT DROVE ME CRAZY UNTIL I HAD AN ULTRASOUND OF MY ABDOMINAL AORTA THERE WAS A SMALL BLOCKAGE THAT WAS TAKEN CARE OF BY WARFERIN. WHICH IS A BLOOD THINNER. 18'S MARTY On Fri, Jan 25, 2013 at 10:59 AM, icandoall...@aol.com wrote: ** Hi Doris, Yes I have had all those symptoms and much more. I never reached remission on Gleevec and had a terrible time until I went on Sprycel. My blood pressure always runs a little high; doc wants me to take BP meds but I have tried them and don't do well on them. The last one I took was Aetenol; gave me heart pains. Have you tried walking and diet. Walking seems to help. A diet low in animal foods, with lots of fish, fruit and veggies may help also. Exercise in moderation is good. One side effect that I had right before my dx was that I could feel my heart beating in my tummy on the right side. It still does, and they don't know why. Good luck and so glad you are in remission. Jeanie3 In a message dated 1/24/2013 11:01:12 A.M. Eastern Standard Time, doris...@aol.com writes: Hi, my name is Doris I don't get on that much but I read often. I'm having trouble with my blood pressure. On gleevec 100mg six a day. Been in remission since 2002. Now my blood pressure out of control. Dr just up my lisinopril to 10mg twice a day with a water pill. The lowest its been so far is156/84.I get dizzy. Light headed and racing heart rate. I totally. Feel weird. And can tell when it spikes. Anyone else having this problems. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] ultrasound of abominal aorta ?
Hi Jeanie, I'm not talking about the aorta of the heart but rather the abdominal aorta. 18's, Marty On Sun, Jan 27, 2013 at 4:21 PM, icandoall...@aol.com wrote: ** Hi Marty and will do. He does an ultrasound of my heart yearly but don't know if that includes the aorta scan or not. I'll ask him. He is aware of my heart beat and pain; just can't figure it out. I have heard that a bulging aorta can cause those symptoms also. Actually the pain go really bad right after I went on Tasigna. The doctor put me on Tramodol for pain and did a MRI. Nothing showed up. It strange. Maybe the aorta scan might show something. Thanks again, Jeanie3 In a message dated 1/26/2013 11:35:24 P.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Jeanie, The Warferin did make that beating go away. It wasn't so much the pain just like a very uncomfortable feeling. I think that you should discuss this with your doctor. You should get an ultrasound to see what if anything is going on. 18's Marty On Sat, Jan 26, 2013 at 3:07 PM, icandoall...@aol.com wrote: ** Hi Marty, did the warferin take care of your problem and did the beating in your abdomen go away? I also have pain in that area? Did you have pain? Just wondering if all will go away if that's the problem. Thanks so much. Jeanie3 In a message dated 1/26/2013 10:34:11 A.M. Eastern Standard Time, icandoall...@aol.com writes: Wow! that is good to know. Thanks so much. I will have the ultrasound and see what it shows. Sounds like a good plan. Thanks again, Jeanie3 In a message dated 1/25/2013 3:50:48 P.M. Eastern Standard Time, wa2...@gmail.com writes: HI JEANIE, THERE WAS A TIME THAT I ALSO FELT MY HEART BEATING IN MY ABDOMEN. IT DROVE ME CRAZY UNTIL I HAD AN ULTRASOUND OF MY ABDOMINAL AORTA THERE WAS A SMALL BLOCKAGE THAT WAS TAKEN CARE OF BY WARFERIN. WHICH IS A BLOOD THINNER. 18'S MARTY On Fri, Jan 25, 2013 at 10:59 AM, icandoall...@aol.com wrote: ** Hi Doris, Yes I have had all those symptoms and much more. I never reached remission on Gleevec and had a terrible time until I went on Sprycel. My blood pressure always runs a little high; doc wants me to take BP meds but I have tried them and don't do well on them. The last one I took was Aetenol; gave me heart pains. Have you tried walking and diet. Walking seems to help. A diet low in animal foods, with lots of fish, fruit and veggies may help also. Exercise in moderation is good. One side effect that I had right before my dx was that I could feel my heart beating in my tummy on the right side. It still does, and they don't know why. Good luck and so glad you are in remission. Jeanie3 In a message dated 1/24/2013 11:01:12 A.M. Eastern Standard Time, doris...@aol.com writes: Hi, my name is Doris I don't get on that much but I read often. I'm having trouble with my blood pressure. On gleevec 100mg six a day. Been in remission since 2002. Now my blood pressure out of control. Dr just up my lisinopril to 10mg twice a day with a water pill. The lowest its been so far is156/84.I get dizzy. Light headed and racing heart rate. I totally. Feel weird. And can tell when it spikes. Anyone else having this problems. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- --
[CMLHope] Gleevec Interactions
I did some research and here is what I found out about what to avoid while taking Gleevec. Please remember that I have never been on any TKI's because I had a bone marrow transplant many years ago. I just do a lot of research. Hopefully this will be able to help you, and others as well. Gleevec Interactions GLEEVEC IS METABOLIZED IN THE LIVER BY CYP3A4. This is the basis for most interactions, if CYP3A4 is affected by other drugs or foods. A pharmacist can use computer programs available to pharmacists to check whether other drugs would interact with Gleevec. The NCCN Task Force Report on GIST Management includes a table of Gleevec interactions on pages S12-S13. Download the pdf at the above link to read this. This table does not name every possible interaction. The Gleevec prescribing information from Novartis also details some interactions. Go to Gleevec.com and click prescribing information at the top of the screen. GRAPEFRUIT, POMEGRANATE, OTHER CITRUS FRUIT Due to the metabolism of Gleevec, Novartis recommends that grapefruit and grapefruit juice be avoided by patients taking Gleevec. The new NCCN Task Force Report mentions grapefruit juice and names a quantity of 200-250 ml as increasing blood levels of Gleevec. That is over 3/4 cup of juice. A smaller quantity might not raise Gleevec levels much. Grapefruit juice INHIBITS the liver enzyme (CYP3A4) that processes Gleevec. If you eat a lot of grapefruit then Gleevec stays in your blood LONGER. It does not decrease the effectiveness of Gleevec, as it raises the blood levels of Gleevec. This could potentially increase side effects. However, if you have no trouble with side effects, then it would not seem that popping the occasional strawberry, grapefruit section, or 1/4 cup of pomegranate juice would hurt... Tangelos are a hybrid of grapefruit and mandarin orange: Some doctors say to stay away from Tangelos. There have been several studies, one being the USDA Agricultural Research Service, have so far shown that unlike grapefruit, interactions with STATINS are not likely with tangelos, even though it is derived from a grapefruit crossed with a tangerine. This is apparently because the furocoumarins in grapefruit are not expressed in tangelo. http://www.ars.usda.gov/research/publications/publications.htm?seq_no_115=175058 POMEGRANATE juice also affects CYP3A, but not in exactly the same way as grapefruit. For some medical papers discussing pomegranate efects on drug disposition see this PubMed search. ST. JOHN'S WORT ON THE OTHER HAND, St. John's wort does the opposite, increasing enzyme activity to get Gleevec out of the body faster. Therefore, it is a clear no-no since it decreases blood levels of Gleevec, thereby decreasing the drug's effectiveness. STATIN DRUGS Gleevec raises the level of statins in the blood. Patients who take statins with Gleevec need to be very cautious, as very serious side effects such as muscle damage (rhabdomyolysis) may result from excess statins. Statin dose should be reduced when taking Gleevec. Discuss this with your pharmacist and doctors. MILK THISTLE Caution! Milk thistle decreases the activity of CYP3A4, which is the major enzyme responsible for the metabolism of Gleevec and Sutent. DO NOT take milk thistle while on these drugs and check with your doctor if on other drugs. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Stay as you are, don't be something your not
This at first this seems to be a joke, but it teaches us something. Just because you have a disease like CML it shouldn't change your life so much that it effects the way you are, and how you live. A 65 year old woman had a heart attack and was taken to the hospital. While on the operating table she had a near death experience.. Seeing God she asked Is my time up? God said, No, you have another 33 years, 2 months and 8 days to live. Upon recovery, the woman decided to stay in the hospital and have a face-lift, liposuction, breast implants and a tummy tuck. Since she had so much more time to live, she figured she might as well make the most of it. She even had someone come in and change her hair color and brighten herteeth! . Finally, after her last operation, she was released from the hospital. While crossing the street on her way home, she was killed by atruck. Arriving in front of God, she demanded, I thought you said I had another 33 years? Why didn't you pull me out of the path of the truck? God replied: Sorry, I didn't recognize you. People think that CML will cause their death. I always respond that they need to stay out of the way of speeding busses... 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Stay as you are, don't be something your not
Hi Skip. I keep on telling you that your still here for a reason. Just like Mommy Lottie was also here for a reason. I guess that she finished up with her reason. By the way, have you noticed that Tracy never even posted anything and she never even signed Lotties obituary columb. Some bitch face, huh. 18's from one long time survivor to another long time survivor Marty On Thu, Feb 28, 2013 at 6:49 PM, Skip Duffie skipd_2...@yahoo.com wrote: *Marty you have words of wisdom, Around 35-36 years ago I was told you have 2 months or 2 years to live. I then had a choice GET SET TO START LIVING OR GET BUSY DYING * *I picked the living as you can see. My 36 years have be great and I thank God for every minut He gave me. I was blessed with pretty good health, had a few scares, but I came * *through thanks to the great medical care I received* This at first this seems to be a joke, but it teaches us something. Just because you have a disease like CML it shouldn't change your life so much that it effects the way you are, and how you live. A 65 year old woman had a heart attack and was taken to the hospital. While on the operating table she had a near death experience.. Seeing God she asked Is my time up? God said, No, you have another 33 years, 2 months and 8 days to live. Upon recovery, the woman decided to stay in the hospital and have a face-lift, liposuction, breast implants and a tummy tuck. Since she had so much more time to live, she figured she might as well make the most of it. She even had someone come in and change her hair color and brighten herteeth! . Finally, after her last operation, she was released from the hospital. While crossing the street on her way home, she was killed by atruck. Arriving in front of God, she demanded, I thought you said I had another 33 years? Why didn't you pull me out of the path of the truck? God replied: Sorry, I didn't recognize you. People think that CML will cause their death. I always respond that they need to stay out of the way of speeding busses... 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] CML Newbie
And hi right back at you. You didn't leave your actual name so I don't know who to address this to. All of what your now going through is what initially happens when your first diagnosed with CML and then put onto a TKI which Gleevec is one of. Some of the symptoms that you are experiencing may get much better as your body acclimates to the Gleevec, and some may just linger but in time you will adjust to most of these side effects. Don't be afraid if your doctor decides to switch you to another TKI because some are actually better then some others depending on your body. I'm just wondering why your doctor only put you on hydroxyurea initially and not Allopurinal as well. This drug helps get rid of any access uric acid thus avoiding any symptoms of the gout. Now just to let you know I had CML almost 23 years ago and have never been on any of these TKI's because none were around at the time. I had to get a bone marrow transplant. If any of these drugs would have been around then I would have probably opted for them rather then the transplant. Just because you have CML it shouldn't stop you from living your life. When you get used to having all of these side effects, and I will tell you that they will get better because of all that I have heard from people that are on them. Some have actually gone into PCRU and are not taking them anymore. PCRU is when they can not detect any more CML cells in your body. This may happen to some people on these TKI's So, mystery person, you just keep going on with your life because CML will probably not kill you. However I do suggest that you stay clear of speeding buses, they just may. Whenever I write something I always end it with two numbers... 18 which is a symbol for life. 18's to you mystery person Marty On Sat, Mar 9, 2013 at 4:17 PM, mylis...@yahoo.ca wrote: Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Thankyou
Hi Jeanie, I would like to shake your son's hand for insisting that you go see a doctor when you started having all of those problems. Sometimes we just don't want to believe that something may be wrong with us and we just procrastinate. Your not the only one because when I first knew something was wrong I did the same. Not wanting to go get checked out. By the way, you mentioned that your WBC and platelets were in the millions when you were first checked out. I don't think that your WBC was in the millions but rather in the hundreds of thousands. Your platelets on the other hand were probably in the millions. Was your spleen enlarged or did you have any pain from your spleen? Once someone learns that they have CML or any other cancer then their life does change forever. It is what we choose to do with out lives that really matters. From what I can see about you is that your handling this very well, and I applaud you for trying to help others. 18's Jeanie, Marty On Wed, Mar 13, 2013 at 4:31 PM, icandoall...@aol.com wrote: ** Hi all, Just to keep the newbies updated as to what to expect on Gleevec and other Meds. I started was dx in Jan 2004 after flying home from a trip. I was so tired I couldn't hardly put one foot in front of the other, and as walking is my daily exercise, I started to complain to my son. He said for me to go to the doctor; well I didn't want to but went to my PCD and he insisted, even though I said I really didn't need it. I had never had much sickness in my life, and really didn't think it was anything serious. I had noticed a rapid heart beat and could feel my heart beating after exertion for while at rest for a while, but was trying to ignore it. The next day my PCD calls and tells me my WBC and platelets are in the millions; he had already gotten me a doctor's appointment with a local oncologist for the evening. I still didn't want to go, but my son insisted. From that first doctor's appointment to now, my life was changed forever. At that time my oncologist had a blood lab in his office so he took a blood sample, and without any further testing, he told me he had good news and bad news. The bad news was that I probably had leukemia; the good news was that they had put a drug called Gleevec on the market, and that it would probably save my life. As I said, my platelets and WBC were in the millions. He immediately put me in the hospital as he said I could have a stroke from the high platelets. I was hooked up to a blood cleaning machine, and had my blood cleaned for 4 days straight, however it didn't do much good. They were giving me huge doses of Hydroxyurea along with a few other drugs. As I had never taken many pills, I ask the nurse what they were and the side effect. She didn't know but went to look it up. It seems the pills were huge to me and there were a lot of them. In the meantime I had to get the Gleevec okd by my insurance and there was a $2000 copay. more later-- Blessings Jeanie3 2004 dx put on Hydroxurea and Gleevec 2008 Sept put on Tasigna 2008-9 Put on Sprycel In a message dated 3/10/2013 9:17:11 P.M. Eastern Daylight Time, mylis...@yahoo.ca writes: Thanks Pat - I appreciate it *From:* Pat pfemail...@gmail.com *To:* CMLHope cmlhope@googlegroups.com *Sent:* Sunday, March 10, 2013 9:00:12 PM *Subject:* [CMLHope] Re: Thankyou Hi Mylissa - We're all glad to be of help. Wanted to give you contact info for the CML Society of Canada. The website is http://cmlsociety.org/ and the toll free number is 1-866-931-5165. Take care, Pat On Mar 10, 5:42 pm, mylis...@yahoo.ca wrote: Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live in Markham, Ontario, Canada. I am so glad I found this group...I don't know anyone else with CML and my onc is not open to a lot of questions and has told me not to research CML on the internet. Think he's trying to keep me from getting scared. So it means a lot to hear from all of you. It's reassuring to know that what I am going through is part of the experience and not some new added problem. Have to say, this has been a frightening experience but things are beginning to look up, with white cells normal now. I just had cytogenetic testing done last Tuesday and should have the results back from that by the end of March. In the meantime, in speaking to the onc about the bone pain, he thought I should try one week at 200mg, and then try 300mg to see if I tolerate that better. I sure hope so - one of the reasons I
Re: [CMLHope] Re: Thankyou
Hi Jeanie, To my knowledge I have only heard about a half dozen people going through that process. Since your left side over the years always gave you some pain perhaps that masked the problem when you first came down with CML??? Take care of yourself, and stay in touch. 18's Marty On Thu, Mar 14, 2013 at 5:52 PM, icandoall...@aol.com wrote: Hi Marty good to hear from you. I remember the nurse who was running the blood cleaning machine pointing out all the white blood cells being cleaned out of my blood. I have it all written down in my faith journal that I started When I first got sick. My spleen was never a problem. But I do remember pain in my left side over the years I was wondering how many patients were hospitalized and their blood cleansed when first dx. More later. Jeanie Sent from my iPhone On Mar 13, 2013, at 11:12 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Jeanie, I would like to shake your son's hand for insisting that you go see a doctor when you started having all of those problems. Sometimes we just don't want to believe that something may be wrong with us and we just procrastinate. Your not the only one because when I first knew something was wrong I did the same. Not wanting to go get checked out. By the way, you mentioned that your WBC and platelets were in the millions when you were first checked out. I don't think that your WBC was in the millions but rather in the hundreds of thousands. Your platelets on the other hand were probably in the millions. Was your spleen enlarged or did you have any pain from your spleen? Once someone learns that they have CML or any other cancer then their life does change forever. It is what we choose to do with out lives that really matters. From what I can see about you is that your handling this very well, and I applaud you for trying to help others. 18's Jeanie, Marty On Wed, Mar 13, 2013 at 4:31 PM, icandoall...@aol.com wrote: ** Hi all, Just to keep the newbies updated as to what to expect on Gleevec and other Meds. I started was dx in Jan 2004 after flying home from a trip. I was so tired I couldn't hardly put one foot in front of the other, and as walking is my daily exercise, I started to complain to my son. He said for me to go to the doctor; well I didn't want to but went to my PCD and he insisted, even though I said I really didn't need it. I had never had much sickness in my life, and really didn't think it was anything serious. I had noticed a rapid heart beat and could feel my heart beating after exertion for while at rest for a while, but was trying to ignore it. The next day my PCD calls and tells me my WBC and platelets are in the millions; he had already gotten me a doctor's appointment with a local oncologist for the evening. I still didn't want to go, but my son insisted. From that first doctor's appointment to now, my life was changed forever. At that time my oncologist had a blood lab in his office so he took a blood sample, and without any further testing, he told me he had good news and bad news. The bad news was that I probably had leukemia; the good news was that they had put a drug called Gleevec on the market, and that it would probably save my life. As I said, my platelets and WBC were in the millions. He immediately put me in the hospital as he said I could have a stroke from the high platelets. I was hooked up to a blood cleaning machine, and had my blood cleaned for 4 days straight, however it didn't do much good. They were giving me huge doses of Hydroxyurea along with a few other drugs. As I had never taken many pills, I ask the nurse what they were and the side effect. She didn't know but went to look it up. It seems the pills were huge to me and there were a lot of them. In the meantime I had to get the Gleevec okd by my insurance and there was a $2000 copay. more later-- Blessings Jeanie3 2004 dx put on Hydroxurea and Gleevec 2008 Sept put on Tasigna 2008-9 Put on Sprycel In a message dated 3/10/2013 9:17:11 P.M. Eastern Daylight Time, mylis...@yahoo.ca writes: Thanks Pat - I appreciate it *From:* Pat pfemail...@gmail.com *To:* CMLHope cmlhope@googlegroups.com *Sent:* Sunday, March 10, 2013 9:00:12 PM *Subject:* [CMLHope] Re: Thankyou Hi Mylissa - We're all glad to be of help. Wanted to give you contact info for the CML Society of Canada. The website is http://cmlsociety.org/ and the toll free number is 1-866-931-5165. Take care, Pat On Mar 10, 5:42 pm, mylis...@yahoo.ca wrote: Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name
Re: [CMLHope] Re: Thankyou
Hi Jeanie, With all that you have gone through I'm glad to hear that your still doing well. 18's Marty On Sat, Mar 16, 2013 at 5:22 PM, icandoall...@aol.com wrote: ** Hi and no, I never had the left side pain before CML but I have had right side pain and it became worse when I went on Tasigna. They did MRI but couldn't find anything. I had gall bladder surgery years ago and thingk that right side pain could be connected. My first onc put me in the hospital twice to have my blood cleaned; I don't think it was necessary. He finally put me on Sprycel while I was in the hospital because nothing was bringing my counts down. I was in the process of changing to Moffitt when I got sick, and so he was the one who had my care at the time. Thanks Marty, Jeanie3 In a message dated 3/14/2013 9:13:24 P.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Jeanie, To my knowledge I have only heard about a half dozen people going through that process. Since your left side over the years always gave you some pain perhaps that masked the problem when you first came down with CML??? Take care of yourself, and stay in touch. 18's Marty On Thu, Mar 14, 2013 at 5:52 PM, icandoall...@aol.com wrote: Hi Marty good to hear from you. I remember the nurse who was running the blood cleaning machine pointing out all the white blood cells being cleaned out of my blood. I have it all written down in my faith journal that I started When I first got sick. My spleen was never a problem. But I do remember pain in my left side over the years I was wondering how many patients were hospitalized and their blood cleansed when first dx. More later. Jeanie Sent from my iPhone On Mar 13, 2013, at 11:12 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Jeanie, I would like to shake your son's hand for insisting that you go see a doctor when you started having all of those problems. Sometimes we just don't want to believe that something may be wrong with us and we just procrastinate. Your not the only one because when I first knew something was wrong I did the same. Not wanting to go get checked out. By the way, you mentioned that your WBC and platelets were in the millions when you were first checked out. I don't think that your WBC was in the millions but rather in the hundreds of thousands. Your platelets on the other hand were probably in the millions. Was your spleen enlarged or did you have any pain from your spleen? Once someone learns that they have CML or any other cancer then their life does change forever. It is what we choose to do with out lives that really matters. From what I can see about you is that your handling this very well, and I applaud you for trying to help others. 18's Jeanie, Marty On Wed, Mar 13, 2013 at 4:31 PM, icandoall...@aol.com wrote: ** Hi all, Just to keep the newbies updated as to what to expect on Gleevec and other Meds. I started was dx in Jan 2004 after flying home from a trip. I was so tired I couldn't hardly put one foot in front of the other, and as walking is my daily exercise, I started to complain to my son. He said for me to go to the doctor; well I didn't want to but went to my PCD and he insisted, even though I said I really didn't need it. I had never had much sickness in my life, and really didn't think it was anything serious. I had noticed a rapid heart beat and could feel my heart beating after exertion for while at rest for a while, but was trying to ignore it. The next day my PCD calls and tells me my WBC and platelets are in the millions; he had already gotten me a doctor's appointment with a local oncologist for the evening. I still didn't want to go, but my son insisted. From that first doctor's appointment to now, my life was changed forever. At that time my oncologist had a blood lab in his office so he took a blood sample, and without any further testing, he told me he had good news and bad news. The bad news was that I probably had leukemia; the good news was that they had put a drug called Gleevec on the market, and that it would probably save my life. As I said, my platelets and WBC were in the millions. He immediately put me in the hospital as he said I could have a stroke from the high platelets. I was hooked up to a blood cleaning machine, and had my blood cleaned for 4 days straight, however it didn't do much good. They were giving me huge doses of Hydroxyurea along with a few other drugs. As I had never taken many pills, I ask the nurse what they were and the side effect. She didn't know but went to look it up. It seems the pills were huge to me and there were a lot of them. In the meantime I had to get the Gleevec okd by my insurance and there was a $2000 copay. more later-- Blessings Jeanie3 2004 dx put on Hydroxurea and Gleevec 2008 Sept put on Tasigna 2008-9 Put on Sprycel In a message dated 3/10/2013 9:17:11 P.M. Eastern Daylight Time
Re: [CMLHope] Gleevec patent coming to an end in U.S. soon
Hi Ted and everyone else that is taking Gleevec. There was a court case in India that sued and won against Novartis for it's patent rights on Gleevec. Please go to this web site and read all about it. http://www.reuters.com/article/2013/04/01/us-india-novartis-patent-idUSBRE93002I20130401 On Wed, Apr 10, 2013 at 11:31 PM, Ted fanruif...@gmail.com wrote: Dear CML fighters I got that the patent of Gleevec in US has expired,however, would the Novartis LOWER the drug price in other nations? Ted in China On Tue, Mar 12, 2013 at 5:44 PM, Marwan Abdeh marwanab...@gmail.comwrote: Dear all friends and readers My son has dermatofibrosarcoma and badly needs Gleevec. Please circulate to everyone who can send any leftovers to us . We are at war in Syria and badly need help. Marwan Abdeh Father On 11/03/2013, Vivi vkrei...@gmail.com wrote: Unfortunately, the U.S. Food and Drug Administration is making it extremely difficult for bio-similar generic drugs to be produced and marketed in the U.S. I'm not familiar with the regulations in Canada but it's possible we won't see a generic of Gleevec all that soon in the U.S. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Gleevec patent coming to an end in U.S. soon
Hi Ted, It really doesn't matter because of the law suit that was won against Nuvartis. This is for India and I'm sure that more countries will also get this going for them. 18's Marty On Fri, Apr 12, 2013 at 12:18 PM, Ted fanruif...@gmail.com wrote: Thanks Marty for sharing this news. After reading it I google the final expire date of Gleevec is January 4, 2015(in my mind that is in this April lol ). Oops it's such a long time, isn't it? For further information please go to the following website: http://www.uspto.gov/web/offices/pac/dapp/opla/term/156.html http://www.uspto.gov/web/offices/pac/dapp/opla/term/certs/5521184.pdf God bless us ! Ted in China On Thursday, April 11, 2013, Marty Gartenberg wrote: Hi Ted and everyone else that is taking Gleevec. There was a court case in India that sued and won against Novartis for it's patent rights on Gleevec. Please go to this web site and read all about it. http://www.reuters.com/article/2013/04/01/us-india-novartis-patent-idUSBRE93002I20130401 On Wed, Apr 10, 2013 at 11:31 PM, Ted fanruif...@gmail.com wrote: Dear CML fighters I got that the patent of Gleevec in US has expired,however, would the Novartis LOWER the drug price in other nations? Ted in China On Tue, Mar 12, 2013 at 5:44 PM, Marwan Abdeh marwanab...@gmail.comwrote: Dear all friends and readers My son has dermatofibrosarcoma and badly needs Gleevec. Please circulate to everyone who can send any leftovers to us . We are at war in Syria and badly need help. Marwan Abdeh Father On 11/03/2013, Vivi vkrei...@gmail.com wrote: Unfortunately, the U.S. Food and Drug Administration is making it extremely difficult for bio-similar generic drugs to be produced and marketed in the U.S. I'm not familiar with the regulations in Canada but it's possible we won't see a generic of Gleevec all that soon in the U.S. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@go -- 发自我的 iPhone -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com
Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon
Hi Skip, I have been sending you email but I never get any answers from you. I think there is something wrong with your email??? I'm glad to learn that your feeling better. Still waiting on a kidney transplant. Nothing yet. 18's Marty On Wed, Apr 17, 2013 at 1:20 PM, Skip Duffie skipd_2...@yahoo.com wrote: Hello Marty, and all sorry I have not been keeping tabs with the Groups but I have been rather ill for a while, although I must admit today I feel much better today than in months. going back over me email I do not see much in the way of email, is there a problem with what I receive or is it that cml 2 and hope are just being quiet... MARTY how are you feeling, I do hope your well. Anyway I am slowly getting back SkipD *From:* Marty Gartenberg wa2...@gmail.com *To:* cmlhope@googlegroups.com *Sent:* Tuesday, April 16, 2013 11:20:06 AM *Subject:* Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon Hi Peg and everyone else. Just so you know, Novartis was sued by some people in India over the patent rights of Gleevec and they won the law suit. Now, this means that India is now allowed to use a generic drug instead of the original Gleevec. So, with this said, Gleevec may just become a thing of the past with a generic drug and ends up costing much less. 18's (symbol for life) Marty On Tue, Apr 16, 2013 at 9:37 AM, peg peg@live.com wrote: Hi All, Been out of the loop for a while, but wanted to add my two cents to this post about Gleevec patent. The end of the patent on any TKI is going to be a mixed bag. While the development of a generic will dramatically bring the cost down on that generic, it will pose a real problem for those on the other TKI's still under patent. Once the cost playing field is no longer level, you will find that insurance formularies will no longer approve the non-generic TKI's, opting for the lower cost one...under the assumption that all TKI's are equal. While some folks will fight for and be granted exceptions, based on previous trial with Gleevec, others of us will not. To grant an exception is to the discretion of the insurance company. The idea that all TKI's are equal is a wide-spread idea in many countries, some refusing to grant use of TKI's that the manufacturer would not negotiate lower pricing. While there is always patient assistance programs available, only some will qualify, and even then just having to go through that change will be unnerving for those of us who's live depend on the drug we are currently taking. Like always, we must be careful what we wish for! Warmest regards to everyone! peg Currently PCRU on Sprycel 50mg every other day. On Monday, March 11, 2013 11:30:24 AM UTC-7, Vivi wrote: Unfortunately, the U.S. Food and Drug Administration is making it extremely difficult for bio-similar generic drugs to be produced and marketed in the U.S. I'm not familiar with the regulations in Canada but it's possible we won't see a generic of Gleevec all that soon in the U.S. -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to mailto:cmlhope%2bunsubscr...@googlegroups.comcmlhope%2bunsubscr...@googlegroups.com . For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You
Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon
Hi Millie, You just said something that shows me what type of a person you really are. You said that you are working to make yourself feel better. Maybe not in those exact words but the same idea. I would like to send you something that was given to me when I had my bone marrow transplant. It was pasted on the outside of the plastic bubble I had to live in for many months. I read it every day and it gave me insperation to continue along my journey. Please see below... I hope that your tests come out well for you and hopefully they may find a solution to your problem. You also have something that is very precious and that is how your mind works. I always say that when you have Leukemia it is not only a disease of the body but the mind as well. You seem to be controling your disease with your mind helping you along. I'm not saying that you can cure yourself with your mind but only that you yourself make it a lot eiser to deal with it because your a very strong willled person. So, I know that this is also meant for you as well... 18's Marty EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY. EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. OUR BELIEF AT THE BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME... FOCUS... On Thu, Apr 18, 2013 at 2:02 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Marty.It is good to see you one line. I will keep you in my prayers and pray that you hear something about a transplant soon. You are always such an inspiration to all of us. No one keeps on top of things like you do. I've been feeling sick for months now, and now they're going to send me to a specialist and perhaps he can figure it all out. I am working hard on feeling good. We all have down times, but I don't give up. You take care.* *18's to you and yours,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Skip Duffie
Hi Beth, I just have one thing to say in answer to your post. You wrote Isolation and fear are powerful tools Indeed they are, but do you want to know a much more powerful tool? It's your Mind. 18's, Marty On Fri, Apr 19, 2013 at 1:28 PM, bkbar...@aol.com wrote: Dear Skip, Marty, Millie, and all those warriors who are struggling right now. I want to pass along a great big hug filled with hope, and light, and healing and positive energy. We need each other during the rough times and I am so glad we have one another. I too have been struggling mightily, but find the one thing that helps, that I keep on working on, is trusting in, believing in, knowing that we can live and love well inspite of and perhaps in some cases because of our illness and how it informs our lives. Isolation and fear are powerful tools that push against us. Community and holding hope and faith for ourselves, our bodies and our spirits, here, united together, will serve and guide us well. I read every day and think of all my fellow warriors out there, those who write, and those who read, and send a prayer to all for peace of mind body and spirit. I tried bosutinib and had horrible side effects at a moderate dose, muscle rigidity all over the body, elevated cpk, emotional distress... after 8 weeks, the BCR showed it had not done anything for the cancer, the cancer had actually grown threw it and I lost two logs. So now back on sprycel at 50 and working on getting back into remission. As I had to go off sprycel in December because of toxicity, it's a scary time. But I remain positive and am researching alternative and complementary options to aid with the toxiicity. If anyone has any suggestions about muscle spasticity, please let me know. I can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this one is new, ongoing and the greatest challenge yet. thanks for yoru help. Beth -Original Message- From: gene and guy Larcher gandglarc...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Apr 19, 2013 10:49 am Subject: [CMLHope] Skip Duffie Dear Skip: So good to hear from you after quite some time. Very sorry to hear you have been so poorly but the good news is that you are getting better. You, along with Marty, have given tremendous hope to the rest of us and shown how to bear long illness with good spirits. Dear old warrior - we wish you the very best and hope to hear much more from you in the future. Guy -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon
Remember Millie what I told you. Your mind is a very powerful tool. It seems that your starting to use it with things that you seem to enjoy. You also Beth. Both of you are survivors! Keep that in mind when you have any problems that may be a bit difficult to deal with. 18's Marty On Fri, Apr 19, 2013 at 9:30 AM, Marty Gartenberg wa2...@gmail.com wrote: Hi Millie, You just said something that shows me what type of a person you really are. You said that you are working to make yourself feel better. Maybe not in those exact words but the same idea. I would like to send you something that was given to me when I had my bone marrow transplant. It was pasted on the outside of the plastic bubble I had to live in for many months. I read it every day and it gave me insperation to continue along my journey. Please see below... I hope that your tests come out well for you and hopefully they may find a solution to your problem. You also have something that is very precious and that is how your mind works. I always say that when you have Leukemia it is not only a disease of the body but the mind as well. You seem to be controling your disease with your mind helping you along. I'm not saying that you can cure yourself with your mind but only that you yourself make it a lot eiser to deal with it because your a very strong willled person. So, I know that this is also meant for you as well... 18's Marty EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY. EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. OUR BELIEF AT THE BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME... FOCUS... On Thu, Apr 18, 2013 at 2:02 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Marty.It is good to see you one line. I will keep you in my prayers and pray that you hear something about a transplant soon. You are always such an inspiration to all of us. No one keeps on top of things like you do. I've been feeling sick for months now, and now they're going to send me to a specialist and perhaps he can figure it all out. I am working hard on feeling good. We all have down times, but I don't give up. You take care.* *18's to you and yours,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Skip Duffie
Dear Marcie, I too have been to Israel and also placed several notes into the cracks of the Western Wall for others suffering from cancer. I would very much like if you could place a piece of paper in one of the cracks of that wall. My email address is wa2...@juno.com. If you would kindly contact me I would appreciate it. 18's Marty On Sun, Apr 21, 2013 at 12:57 AM, Marcie Goodman margoo...@aol.com wrote: Hi Beth and Fellow Warriors: I pray for all of us to do well and live long, happy, pain free lives. What Millie wrote is so true. People who don't have CML or those who aren't related or very close to a CML patient don't get it. My sister is in from Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we had dinner with cousins who kept saying to me, I guess you aren't really sick because you look great. Really? I'm wearing a wig, just started with false eyelashes, had a week with such bad Gleevec stomach that I can barely sit because my bottom is so sore, muscle cramps and terrible bone pain. But life goes on and I'm determined to live my life, not focus on my death. That will happen whenever the Heavenly Father determines that it is my time. The point I guess I'm making is that there is so much isolation and fear because we have something rare and it is scary to us and others to hear the word cancer. The silver lining is that we have an illness that can be managed, albeit with horrific side effects for many, for quite a long time. Plus new treatment options. And we have one another which is a true blessing. Beth, I send good wishes your way and will say prayers for you. My heartfelt thanks to all of you for the kindness you always extend. One last thing. I'm going to Israel the end of May. There is a tradition in my religion, Judaism, that if you write a note or prayer on a small piece of paper and fold it up and place it in a crack in the Western Wall in Jerusalem that God will answer your prayers. I've had miraculous experiences, including that more than 28 years ago we were told it was IMPOSSIBLE for me to get pregnant. I gave a prayer to a friend who was going to Israel that asked God to bless us with a baby and within 6 weeks got pregnant. We only have one very beautiful 25 year old daughter. If anyone would like me to place notes for them, please let me know and I'll give you my private email. I figure a prayer to God is always a good thing and I am happy to do this for anyone that would feel some comfort and hope in this old tradition. Marcie Sent from my iPad On Apr 20, 2013, at 4:04 AM, C.M. Houtz ho...@ptd.net wrote: *Hi Beth,* ** *I know you struggle with your meds and that you have had so many side effects. I'm so sorry that this new drug has caused you such problems. I am not sleeping well tonight, so decided to get up and do some things on here that I've been meaning to do. I wanted to print out some patterns to hand stitch. I haven't been feeling well, and am seeing an Gastrointerologist (spelling is wrong), but at 4:00 A.M., what do you expect :). When I came off of two months of Home Caredue to a hip problem, I thought I'd be feeling better, but started with nausea. It's not every day, but enough that I am having trouble dealing with it. I also was in severe pain due to my polymyalgia. After years on Tasigna and dealing with constipation, I'm dealing with the opposite most days. I had a sinus infection and my doctor put me on an antibiotic and that got rid of it, but the stomach problems have stayed with me. I also was taking meds for acid reflux and now, after a year on the stuff, Express Script has told me that it can interfere with the Tasigna, so had to stop that. My pain and whatever has made me so weak that it's almost impossible for me to get up from a chair without help. I'm not sure if the Arthritis has caused this, or if it's a medication problem, but I can understand where you are coming from. I'm anxious to see my Oncologist next month and, hopefully, I'll still be in remission. We all have issues, but must stay strong and fight it as hard as we can. I know that it sounds easy, and know that it isn't, but just remember that we're all here to help one another, and you all have helped me so much. People look at you and think...you look well, and don't realize how difficult this CML is to fight. I look in the mirror and wonder who this old lady is as my hair if all but gone and I no longer have eye lashes, but I try to laugh and just put my wig on and go out whenever I can do it. Lately, that hasn't been to often. The weather is getting better so one of these days, I'm going to go out with my jazzy chair and enjoy the warmer days. I fill in the rest of my time with needle work. I'm doing a lot of embroidery right now, and quilting. I have two quilt tops to finish up and then will have someone get them ready for me to quilt. I try to fill my
[CMLHope] The Keeper
This is actually the story of my life. You are all my friends and I value your friendship and wanted to share this with you. Now, before you read the rest let me explain what a keeper really is to me. Anyone can be a keeper. I have seen it many times, a wife helping her husband, a husband helping his wife. A friend helping his or her friend. People that really care about each other trying to always be there for them to help. However, I have also seen the opposite. I have seen that sometimes when people become ill then their partner or friend decides to leave. When I was going through my bone marrow my wife Shelly never waivered, but some of my so called friends decided to leave, and I never forgot. It is these kinds of people that were never keepers to begin with. I read and see the love and compassion of the people on this site and I am simply amaized in seeing one human being selflessly helping another human being. When one has some problems and another can comfort that person then they are what I would call a keeper. 18's Marty Dear Keeper, I grew up in the 50's with practical parents. A mother, God love her, who washed aluminum foil after she cooked in it, then reused it. She was the original recycle queen, before they had a Name for it... A father who was happier getting old shoes fixed than buying new ones, which we couldn't afford anyway, but in spite of that we still made due. Their marriage was good, their dreams focused. Their best friends lived barely a wave away. I can see them now, Dad in trousers, tee shirt and a hat, and Mom in a house dress, broom in one hand and dish-towel in the other. It was the time for fixing things. A curtain rod, the kitchen radio, screen door, the oven door, the hem in a dress, things we keep. It was a way of life, and sometimes it made me crazy All that re-fixing, eating, renewing, I wanted just once to be wasteful. Waste meant affluence. Throwing things away meant you knew there'd always be more. But then my mother died, and on that clear summer's night, in the warmth of the hospital room, I was struck with the pain of learning that sometimes there isn't any more. Sometimes, what we care about most gets all used up and goes away...never to return. So... While we have it.. it's best we love it... And care for it And fix it when it's broken And heal it when it's sick. This is true... For illness, For marriage And old cars... And children with bad report cards. Dogs and cats with bad hips And aging parents. And grandparents. We keep them because they are worth it, because we are worth it. Some things we keep. Like a best friend that moved away or a classmate we grew up with. There are just some things that make life important, like people we know who are special. And so, we keep them close! Good friends are like stars You don't always see them, but you know they are always there. Keep them close -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] The Keeper
Hi Millie, Sorry to hear about your spouse but sometimes it just happens. As far as some of your so called friends, well I had a bunch of them as well. There are actually three kinds of people that may consider themselves friends. The first are people that really care. They will call or visit with you and show you their support. Then there are those that may or may not even call you once or maybe that once and never bother to call or visit you ever again. Now we come to the third kind of people. Once they find out that you have cancer you will never hear from them. They must think that if they talk to you or visit with you then the cancer will be transfered to them. I had or still have some of these people in my life. The first kind I still have. The second kind, well once I was out of transplant I called them and asked why they didn't call me but one time and they told me that they just didn't know what to say but they were all glad that I survived my ordeal. I kept some of them as friends. Then the third kind, I never had anything to do with them. Even today when I was in the hospital for three weeks in 2011 one so called friend for over forty years never even came to visit me even though he was less then fifteen minutes from the hospital. By the way, I once helped save his life, but he seemed to forget that, So Millie, that is what happens with so called friends as you already know. 18's Marty On Sun, Apr 21, 2013 at 5:29 PM, C.M. Houtz ho...@ptd.net wrote: ** *Without going into detailsI do agree with you and your message is so true. I have a spouse who couldn't tell you much about what's wrong with his wife (me) of 53 years. It hurts, but I get past it and deal with the people who do care. I have 3 wonderful sons who keep on top of things. The youngest lives with me. I couldn't do much without him. He is so caring and loving and I'm blessed to have a wonderful son like him. The others live out of PA but call and are always caring about me. I guess they take after their Mom as I am one who takes care of everyone, even now. I don't understand the other kind of people, but figure it's them that have the problem. When I developed Breast Cancer 20 years ago, I lost many, so called, friends. I couldn't understand it as I was always there for them. You learn a lot when you have Cancer. People can't deal with it. I found the same when I lost my Daughter. People would avoid you when a hug would have meant so much. I have many wonderful friends.mostly ones that enjoy the same things I enjoy. They would do anything for me and have. These are the real keepers. I also have old friends from many years ago that write and support me all of the time, so I feel fortunate. Some of the best support is given to me here on line. We all share similar things and understand what the other one is going through. There is so much warmth and caring and even though it's the internet, I feel surrounded by it all and, believe me, it helps me through some rough days. Marty, you are one of the best and I do hope that whatever you put in the wall comes to be. You take care my friend.* *18's to you.* *Millie* - Original Message - *From:* Marty Gartenberg wa2...@gmail.com *To:* CMLHope@googlegroups.com *Sent:* Sunday, April 21, 2013 2:59 PM *Subject:* [CMLHope] The Keeper This is actually the story of my life. You are all my friends and I value your friendship and wanted to share this with you. Now, before you read the rest let me explain what a keeper really is to me. Anyone can be a keeper. I have seen it many times, a wife helping her husband, a husband helping his wife. A friend helping his or her friend. People that really care about each other trying to always be there for them to help. However, I have also seen the opposite. I have seen that sometimes when people become ill then their partner or friend decides to leave. When I was going through my bone marrow my wife Shelly never waivered, but some of my so called friends decided to leave, and I never forgot. It is these kinds of people that were never keepers to begin with. I read and see the love and compassion of the people on this site and I am simply amaized in seeing one human being selflessly helping another human being. When one has some problems and another can comfort that person then they are what I would call a keeper. 18's Marty Dear Keeper, I grew up in the 50's with practical parents. A mother, God love her, who washed aluminum foil after she cooked in it, then reused it. She was the original recycle queen, before they had a Name for it... A father who was happier getting old shoes fixed than buying new ones, which we couldn't afford anyway, but in spite of that we still made due. Their marriage was good, their dreams focused. Their best friends lived barely a wave away. I can see them now, Dad in trousers, tee shirt and a hat, and Mom
Re: [CMLHope] Test Results
Hi Richard, As I said on the other site, I wish you the best of luck. 18's Marty On Wed, Apr 24, 2013 at 6:16 PM, Richard H richard1huff...@comcast.netwrote: My tests show a sharp increase in counts indicating that my Gleevec vacation is coming to an end. I will complete my 5th year off Gleevec by being retested to be sure this test was correct. My ONC and I agree that is correct when we viewed the graph for the last 3 years. I will also have a BMB to see if any mutations have occurred. I feel better than I have for years, so it is hard believe that it is happening. The GOOD news is I was able to complete 5 years when most people pursing this path failed in less than two. Richard H. ** ** dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 11/8 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .007 Gleevec 1/08 -5/08 Gleevec Vacation 7/08-Present QT-PCR .003 4/09 QT-PCR .00156/09 QT-PCR .00219/09 QT-PCR .00281/10 QT-PCR .001 4/10 QT-PCR .00468 10/10 QT-PCR 1.049% 2/11 QT-PCR .0612% 8/11 QT-PCR 2.616 %2/12 QT-PCR 2.410% 8/12 QT-PCR 9.183% 4/13 ** ** -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] AND THEN IT'S WINTER.
MY LIFE HAS BEEN AN ADVENTURE OF SORTS, AND THEN IT'S WINTER. You know. . . Time has a way of moving quickly and catching you unaware of the passing years. It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams. But, here it is... The winter of my life and it catches me by surprise... How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like. But, here it is... My friends are retired and getting grey... They move slower and I see an older person now. Some are in better and some worse shape than me... But, I see the great change... Not like the ones that I remember who were young and vibrant... But, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be. Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit! And so... Now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!! But, at least I know, that though the winter has come, and I'm not sure how long it will last... This I know, that when it's over on this earth... Its over. A new adventure will begin! Yes, I have regrets. There are things I wish I hadn't done... Things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime. So, if you're not in your winter yet... Let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don't put things off too long!! Life goes by quickly. So, do what you can today, as you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life... So, live for today and say all the things that you want your loved ones to remember... And hope that they appreciate and love you for all the things that you have done for them in all the years past!! Life is a gift to you. The way you live it is your gift to those who come after. Make it a fantastic one. LIVE IT WELL! ENJOY TODAY! DO SOMETHING FUN! BE HAPPY ! HAVE A GREAT DAY Remember: It is health that is real wealth and not pieces of gold and silver. LIVE HAPPY IN 2013! LASTLY, CONSIDER THE FOLLOWING: TODAY IS THE OLDEST YOU'VE EVER BEEN, YET THE YOUNGEST YOU'LL EVER BE SO -- ENJOY THIS DAY WHILE IT LASTS. 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] AND THEN IT'S WINTER.
Susan, we are all living treasures... 18's Marty Thanks Marty. You are a treasure. 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 On Sun, Apr 28, 2013 at 8:09 AM, Susan Zimmerman rszim0...@aol.com wrote: Thanks Marty. You are a treasure. 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Marty Gartenberg wa2...@gmail.com To: CMLHope CMLHope@googlegroups.com Sent: Sun, Apr 28, 2013 7:46 am Subject: [CMLHope] AND THEN IT'S WINTER. MY LIFE HAS BEEN AN ADVENTURE OF SORTS, AND THEN IT'S WINTER. You know. . . Time has a way of moving quickly and catching you unaware of the passing years. It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams. But, here it is... The winter of my life and it catches me by surprise... How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like. But, here it is... My friends are retired and getting grey... They move slower and I see an older person now. Some are in better and some worse shape than me... But, I see the great change... Not like the ones that I remember who were young and vibrant... But, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be. Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit! And so... Now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!! But, at least I know, that though the winter has come, and I'm not sure how long it will last... This I know, that when it's over on this earth... Its over. A new adventure will begin! Yes, I have regrets. There are things I wish I hadn't done... Things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime. So, if you're not in your winter yet... Let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don't put things off too long!! Life goes by quickly. So, do what you can today, as you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life... So, live for today and say all the things that you want your loved ones to remember... And hope that they appreciate and love you for all the things that you have done for them in all the years past!! Life is a gift to you. The way you live it is your gift to those who come after. Make it a fantastic one. LIVE IT WELL! ENJOY TODAY! DO SOMETHING FUN! BE HAPPY ! HAVE A GREAT DAY Remember: It is health that is real wealth and not pieces of gold and silver. LIVE HAPPY IN 2013! LASTLY, CONSIDER THE FOLLOWING: TODAY IS THE OLDEST YOU'VE EVER BEEN, YET THE YOUNGEST YOU'LL EVER BE SO -- ENJOY THIS DAY WHILE IT LASTS. 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google
Re: [CMLHope] AND THEN IT'S WINTER.
Hi Millie, No matter what you may be going through don't you ever give up. Why do you think that I always end any of my posts with 18's Millie 18's to you. Marty On Sun, Apr 28, 2013 at 10:11 AM, C.M. Houtz ho...@ptd.net wrote: ** *You are an inspiration and what you said is so true. I never thought that I'd be in the winter, but here I am. I still try very hard to take one day at a time and do the best I can. I've had a lot of health issues lately, but haven't given up. I will save what you've written and that will inspire me to deal with each day and do the best I can. Thanks Marty..Millie* - Original Message - *From:* Marty Gartenberg wa2...@gmail.com *To:* CMLHope@googlegroups.com *Sent:* Sunday, April 28, 2013 7:46 AM *Subject:* [CMLHope] AND THEN IT'S WINTER. MY LIFE HAS BEEN AN ADVENTURE OF SORTS, AND THEN IT'S WINTER. You know. . . Time has a way of moving quickly and catching you unaware of the passing years. It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams. But, here it is... The winter of my life and it catches me by surprise... How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like. But, here it is... My friends are retired and getting grey... They move slower and I see an older person now. Some are in better and some worse shape than me... But, I see the great change... Not like the ones that I remember who were young and vibrant... But, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be. Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit! And so... Now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!! But, at least I know, that though the winter has come, and I'm not sure how long it will last... This I know, that when it's over on this earth... Its over. A new adventure will begin! Yes, I have regrets. There are things I wish I hadn't done... Things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime. So, if you're not in your winter yet... Let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don't put things off too long!! Life goes by quickly. So, do what you can today, as you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life... So, live for today and say all the things that you want your loved ones to remember... And hope that they appreciate and love you for all the things that you have done for them in all the years past!! Life is a gift to you. The way you live it is your gift to those who come after. Make it a fantastic one. LIVE IT WELL! ENJOY TODAY! DO SOMETHING FUN! BE HAPPY ! HAVE A GREAT DAY Remember: It is health that is real wealth and not pieces of gold and silver. LIVE HAPPY IN 2013! LASTLY, CONSIDER THE FOLLOWING: TODAY IS THE OLDEST YOU'VE EVER BEEN, YET THE YOUNGEST YOU'LL EVER BE SO -- ENJOY THIS DAY WHILE IT LASTS. 18's Marty -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You
Re: [CMLHope] Cramping...
Hi Angie, Many years ago after my bone marrow transplant I would get the most painful cramps in almost every part of my body but it was my legs that was the worst of all. This went on for a long time until one of my friends told me to start taking Magnesium. I did and no more cramps. Maybe you might want to try it as well and see what happens. I hope that it also works for you. 18's Marty On Thu, May 2, 2013 at 1:12 AM, ANGELYN ESDERS esd...@rogers.com wrote: I was really bothered by cramping for some years (I have been on Gleevec for 12 years now.). I find that the best and fastest relief for cramping in the feet is standing barefoot on a COLD surface. As my bedroom is carpeted, I used to keep a large plastic covered book beside the bed to step on when the cramps attacked. It was, at least, cool to my feet. Any movement repeated a few times with effort will cramp mepeeling potatoes, polishing silver, cutting with scissors. I have even gotten a cramp in my lips while putting on lipstick. The cramp of the throat muscles while yawning is the MOST uncomfortable of all. I hate getting a foot cramp while I am driving at high speed on a freeway. I tried potassium supplements, and drinking orange juice when a cramp struck. After so many years I still get them but they are fewer and farther between. I always look around and see unfortunates whose lives are worse than mine, and I am grateful for the ability to live a pretty normal life despite CML. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie -Original Message- From: ICANDOALLTTC icandoall...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, May 1, 2013 2:28 pm Subject: [CMLHope] Jim and Millie and all Thanks Jim for all your support. You there Millie? Just wondering how you are? Jeanie3 In a message dated 4/30/2013 5:51:30 P.M. Eastern Daylight Time, drodegh...@sbcglobal.net writes: Hi Peg, I also have the cramping, I'm on Gleevec since it was approved in the USA. I was dxed 4/12,1997. I've experienced many of the known side effects. Eye bleeds, cramping in the legs(upper and lower), feet insteps, forearm, hands, I inquired abut muscle relaxers and Onc. gave me some and it didn't help. The legs and hands respond to hot water, the feet don't! My Pcr test is negative that's a plus that we are so happy for. I'm 68 and the side effects aren't bad enough for me to want to venture into the unknown with a different med. that may not even work for me or the side effects are worse than what I currently have. 18s to all my fellow warriors we must never give up research is making head way as never before who knows what they ill come up with next. some day the big C' will stand for CURE. I pray every day for that AMEN. God Bless us all. Jim Rodeghier --- On *Mon, 4/29/13, peg peg@live.com* wrote: From: peg peg@live.com Subject: [CMLHope] TKI Spasticity To: cmlhope@googlegroups.com Date: Monday, April 29, 2013, 10:57 AM Hi all, Sorry it takes me a while to catch up these days. Just read Beth's post on spasticity and wanted to share. There are many folks having muscle related problems with all of the CML drugs. The spectrum ranges from the seriousness of myopathy to simple muscles spasms, with everything in between. Gleevec gave me myopathy. Because I was not a good candidate for Tasigna we moved directly to Sprycel back in 2010...before it was front line approved. For me Sprycel causes such severe muscle contractions that I have developed contractures in several places in my body. At first we just thought it was my arthritis causing limited range of motion, but then several months ago finally realized what had happened. I am in physical therapy now to improve my range of motion. We have also had to radically adjust the Sprycel dosing...not just for the contractures, but also the crippling fatigue, mind numbing brain fog, bone pain and Sprycel induced depression. The only time I feel really good now is on Sprycel holidays. After many dose reductions here's where I am at...in 2011 we started dropping the daily dosefirst 70mg then 50mg. We also tried 50mg every other day, then 20mg daily. All of these changes still held me at PCRU. But even at 20mg daily it was difficult to have a normal life. There was also a concern from the specialist I see who helped develop Spycel. He believes that from what he is seeing, the way Sprycel affects the CML is more related to the size of each dose, rather than the frequency, so he had a concern that 20mg a day would not hold the PCRU. Although I have heard of cases where it is. We also noted that for me a washout of a few days off Sprycel helped me recover from the side effects. Without that washout, the affects would load up. So this was when we started experimenting last Oct with twice weekly dosing. Unfortunately 70mg still proved to high
Re: [CMLHope] Cramping...
Hi Greenie, I am so happy to hear about you getting a years supply of Gleevec at no cost to you. I kind of know how you felt about having a one years supply of Gleevec with you. I'll bet that you kept turning around looking for anyone that might want to steal it from you. I experienced the same thing when I had to carry my medication from the hospital to my home. If you should ever have any concerns about your safety you might want to get in touch with me. Email wa2...@juno.com I am a certified home safety instructor and I would be glad to give you some tips. 18's Marty On Thu, May 2, 2013 at 7:52 AM, myvet...@aol.com wrote: ** Wow Angie, your cramping story sounds just like mine, the throat cramps and the muscle that runs along the left front side of my leg is worse. Mycar, I have a 6 speed Trans and I have to push the shifter into neutral and pull off the road and walk it off. Well I flew into Chicago yesterday to see my cancer Doctor at Northwestern University and they canceled my study. Northwestern is doing their own study and Novartis is involved it to. The good thing now I only have to fly into Chicago once a year to pick up my med's. and they are going to be free. I don't have to keep a diary any more and their is only going to be 2 other people in it with me plus 200 globally. She told me that if I want to see a cancer Doctor here in Fort Myers, FL. that's up to me, so that means I only have to get blood twice a year. I started the first study on January 9th 2000 and have been on Gleevec all these years. So their is a light at the end of the tunnel. Getting back to the cramps I still use a bar of Dial soap between the sheets to help with the cramps and it does help some what. So they gave me a year's supply of Gleevec in a bag and I felt like I was looking over my shoulder to see if in one was following me to take it and run off with it. You all take care, Greenie in stormy raining Florida. In a message dated 5/2/2013 1:12:43 A.M. Eastern Daylight Time, esd...@rogers.com writes: I was really bothered by cramping for some years (I have been on Gleevec for 12 years now.). I find that the best and fastest relief for cramping in the feet is standing barefoot on a COLD surface. As my bedroom is carpeted, I used to keep a large plastic covered book beside the bed to step on when the cramps attacked. It was, at least, cool to my feet. Any movement repeated a few times with effort will cramp mepeeling potatoes, polishing silver, cutting with scissors. I have even gotten a cramp in my lips while putting on lipstick. The cramp of the throat muscles while yawning is the MOST uncomfortable of all. I hate getting a foot cramp while I am driving at high speed on a freeway. I tried potassium supplements, and drinking orange juice when a cramp struck. After so many years I still get them but they are fewer and farther between. I always look around and see unfortunates whose lives are worse than mine, and I am grateful for the ability to live a pretty normal life despite CML. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie -Original Message- From: ICANDOALLTTC icandoall...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, May 1, 2013 2:28 pm Subject: [CMLHope] Jim and Millie and all Thanks Jim for all your support. You there Millie? Just wondering how you are? Jeanie3 In a message dated 4/30/2013 5:51:30 P.M. Eastern Daylight Time, drodegh...@sbcglobal.net writes: Hi Peg, I also have the cramping, I'm on Gleevec since it was approved in the USA. I was dxed 4/12,1997. I've experienced many of the known side effects. Eye bleeds, cramping in the legs(upper and lower), feet insteps, forearm, hands, I inquired abut muscle relaxers and Onc. gave me some and it didn't help. The legs and hands respond to hot water, the feet don't! My Pcr test is negative that's a plus that we are so happy for. I'm 68 and the side effects aren't bad enough for me to want to venture into the unknown with a different med. that may not even work for me or the side effects are worse than what I currently have. 18s to all my fellow warriors we must never give up research is making head way as never before who knows what they ill come up with next. some day the big C' will stand for CURE. I pray every day for that AMEN. God Bless us all. Jim Rodeghier --- On *Mon, 4/29/13, peg peg@live.com* wrote: From: peg peg@live.com Subject: [CMLHope] TKI Spasticity To: cmlhope@googlegroups.com Date: Monday, April 29, 2013, 10:57 AM Hi all, Sorry it takes me a while to catch up these days. Just read Beth's post on spasticity and wanted to share. There are many folks having muscle related problems with all of the CML drugs. The spectrum ranges from the seriousness of myopathy to simple muscles spasms, with everything in between. Gleevec gave me myopathy.
Re: [CMLHope]
Hi, I have never been on Gleevec or any other TKI's. I had a bone marrow transplant, and I also get these same kinds of back pain you describe. They feel like they are in the center of my back in the middle of my rib cage like someone was pushing down on my shoulders. When I lay down they seem to get better for a while. When these pains are very bad I put a heating pad on my back and just lie down. Hope you find some relief soon 18's Marty On Sun, May 5, 2013 at 10:57 AM, DAWN RODEGHIER drodegh...@sbcglobal.netwrote: Hi fellow warriors, I was wondering if I remember correctly that the subject of arthritis has come up regarding those of us on Gleevec and what was said. I'm on Gleevec and have been since it was approved in the states. About 6 weeks ago I started having medium to severe back pain in the mussels that are next to my shoulder blades toward the center of my back. I haven't done any heavy lifting or such it doesn't seem to want to go away. Has any one experienced any problems like this and what was done to get rid of it. desperately seeking ideas to help stop it? Thanks for any ideas and 18s to you all! Jim -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon
Hi Millie, I'm just checking up on you. Did you get those tests done yet? I hope that everything turned out well for you. 18's, Marty On Thu, Apr 18, 2013 at 2:02 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Marty.It is good to see you one line. I will keep you in my prayers and pray that you hear something about a transplant soon. You are always such an inspiration to all of us. No one keeps on top of things like you do. I've been feeling sick for months now, and now they're going to send me to a specialist and perhaps he can figure it all out. I am working hard on feeling good. We all have down times, but I don't give up. You take care.* *18's to you and yours,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] posting my blood panel results today
Hi Jeannie,
All I can say is WOW!!! You sure that you have Leukemia? With counts like
that it sure doesn't show.
Don't worry about your sugar counts just try and eat more sensibly, and
that includes your Cholesterol
As Far as your Creatinine, it is fine don't worry about it. Your doing
remarkably Great!
I now present you with the {{Robes of The Survivor}} Wear them proudly.
I also now share my Number 1 rating in The Zavie's Zero Club with you. Do
you know what that is? If not then just let me know and I will explain it
to you.
By the way, you have proven exactly what the menaing of 18's really are.
18's,
Marty
On Tue, May 14, 2013 at 8:11 AM, icandoall...@aol.com wrote:
**
WBC 6.2 range 3.8-10.8 thousand/ul
RBC 4.33 range 3.80-5.10 milliion/ul
Hemoglobin 13.5 range 11.7-15.5 g/dl
Hematocrit 41.4 range 35.0-45.0%
MCV 95.5 range 80.0-100.0 fl
MCH 31.2 range 27.0-33.0 pg
MCHC 32.c range 32.0-36.0 g/dl
RDW 13.7 range 11.0-15.0%
Platelet Count 257 range 140-400 thousand/ul
Absolute Neutrophils 3360 range 1500-7600 cells/ul
Absolute Lymphocytes 2362 range 850-3900/cells/ul
Absolute Monocytes 316 range 200-950 cells/ul
Absolute Eosinophils 130 range 15-5-- cells/ul
Absolute Basophils 31 range 0-200 cells/ul
Cholesterol was real high
Sugar was 119 a little high
Creatinine was a little high 0.99 range 0.60-0.93 mg/dl
Everything else was normal
Great report best I've had in a long time
Blessings
Jeanie3
In a message dated 5/10/2013 8:46:55 A.M. Eastern Daylight Time,
cinem...@yahoo.com writes:
your lucky you get the gleevec for $35. a month larry,good luck in
keeping that as low as you can.
i pay $3232. a month with mvp...rob.rhggoodrich@ yahoo.com
*From:* icandoall...@aol.com icandoall...@aol.com
*To:* cmlhope@googlegroups.com
*Sent:* Saturday, May 4, 2013 11:53 AM
*Subject:* Re: [CMLHope] insurance coverage
Hi Larry, call the company right away and ask if they cover it. Most
are very helpful.
Jeanie3
In a message dated 5/3/2013 12:52:31 P.M. Eastern Daylight Time,
la...@taper.com writes:
Hello group I have a question . my current insurance is united health
care it cost 35.00 a month for gleevec . my company is thinking of
switching to anthem blue cross , I know there are different plans but is
anyone on gleevec using anthem , does it cover the gleevec ??? just
trying to be prepared .
Larry
Lex , ky
God bless all the warriors .
--
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Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon
Hi Millie, sorry it took so long to get back to you. Since I am on dialysis it is sometimes difficult to do what I want. However we are both fighters so that is what we know how to do. Even with all of your problems you are still hanging in there and so am I. As far as 18's well that is what we are trying to do, just staying alive and trying to enjoy our lives. So, it gives me great pleasure to wish you many more 18's Marty On Wed, May 8, 2013 at 11:45 AM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Marty.I did have the scope into my stomach done, and other then minor things, nothing showed up. I did, however, spend a couple of days in the hospital as my blood thinner working overtime and I was bleeding internallyalso I was completely dehydrated. The cause is still unknown ad I hadn't changed anything and was getting my blood work done on time, etc. Now I find out that there is something going on with my liver and it worries me, but they have cut back on some of the medicine that could be causing it. They also put me back on Home Care from our local hospital. They are great people, but it keeps me in the house, which is difficult, but right now, I can't go anywhere as I'm very weak from everything. There are other things going on too, but I won't go into all of it. Needless to say, I'm hoping to get these things cleared up. They want to do a colonoscopy next, but that's going to wait until my hemorrhoids clear up. It seems like I'm getting hit from all sides right now, but I'm keeping busy and trying to think positive and that's the best I can do. I am wondering if the Tasigna is causing the liver function problems. It scares me to think of coming off of it, but it might be something I have to do.at least for a while. I'll have to wait and see what my Oncologist says. I see him in a couple of weeks, but the nurses that will be coming in might just talk to him sooner and we'll go from there. I've lost about 20 lbs and that's not a bad thing. I know that I'm not eating right, but just find it difficult to do that when it makes me sick, so on and on. I am smiling and staying positiveor trying very hard. Thanks for caring and hope I haven't given you to much information. I'll try to keep everyone informed. Don't know if others have had issues with their liver. If so, I'd appreciate hearing from them. * ** *Thanks for all of your 18's.I really need them now.* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Arthritis ?
Hi Suzieq, Yes cheries are good at preventing the gout. However most cherry juice is made with other ingredients such as grape juice which won't do a thing to help prevent the gout. If fresh cheries are in season that would be a much better choice. I eat pounds of them when they are in season. There are very few pure cherry juice on the market, so you need to read the label on the bottle. Please discuss your suspition of having the gout with your doctor. Maybe he or she could subscribe some Allopurnial for you to try out. 18's, Marty On Wed, May 15, 2013 at 6:11 PM, Suzieq sheila.a.wat...@gmail.com wrote: Marty Patrick: Thank ya'll both. This is something to think about and will discuss it with my doctor when I see her. I had to change my appointment from today until the 29th. I have a really bad bout of sinusitis, head cold, coughing and hacking and didn't want to go up to the center and expose some of those there that might have compromised immune systems. I may go up to the grocery store and pick up some Cherry Juice as that is suppose to be excellent for gout. It helps clear the uric acid from your system. My husband had to take the Allipurnial once as he had a bout of gout. Thank y'all so much for your help, prayers, good wishes. I've missed coming here to visit and talking with all of you. I won't be so scarce again. :) Keep Looking Up, Suzieq -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Hello
Hi Terri, It looks like someone has hijacked your email address. [CMLHope] Hello Inbox x Terri Migut terrijef...@aol.com 6:06 AM (2 hours ago) to rentals, willzkane, cpaquet33312, malrburnside, luff2000, zertuche_aldo, cteeter21, linda.alfwebb, drsliger, 605-873-2852, dynamodj, cmlhope http://www.paulfilm.pl/_invitation.html?uhurysyko=81061468jgefe=47299 -- -- [CMLHope] A support group of http://cmlhope.com On Fri, May 17, 2013 at 6:06 AM, Terri Migut terrijef...@aol.com wrote: http://www.paulfilm.pl/_invitation.html?uhurysyko=81061468jgefe=47299 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Arthritis ?
Hi Suzieq, Well your on the right track about that cherry juice, however you need to stay far away from that cherry wine, or anything that contains any alcohol. That is a no no for the gout. You know if that cherry consentrate juice cost $18 then if it helps you with the pain it is worth every penny. Those dried cherries are also very good. So if it is the gout you are suffering from then you may find some relief. If not then the cherries are very high in anti oxidants and that is good for your system Humm, $18 dollars... Here is another 18's Marty On Fri, May 17, 2013 at 6:28 PM, Suzieq sheila.a.wat...@gmail.com wrote: Marty: I found a bottle of Cherry Concentrate Juice, only have to mix two tablespoons with some water or whatever I want to drink. Course, it cost right at $18 for about a quart bottle, but will last a good long while. This grocery store is the only one I found that carries this juice. And, I did read labels and saw where most juices are flavored Apple juice or grape juice. You think when it says 100% Juice, that's what you are getting until you read the label and find out just what sort of juices are mixed together. LOL!!! Plus, bought some dried Cherries eat some of those as well as I bought a bottle of Cherry Wine. So, I think I did pretty good. :) There aren't any nice fresh Cherries available here yet, I looked. Normally, they cost as arm leg when they do first show up in the produce isle. :) I am going to discuss this matter of Gout with my Hem./Onc. when I see her at the end of the month. Keep Looking Up, Suzieq -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Help with Arthritis
Hi Jim, I happen to know someone by the name of Jim Thompson that lives on Staten Island. Could this be you? If it is then we sure do live in a small world. 18's (symbol for life) Marty On Fri, May 17, 2013 at 9:59 AM, jim thomson thom8...@yahoo.com wrote: Hello, I saw the problems that you have been having from Arthritis and thought that would send some information about what I have been taking for over a year and had great success with. I was going to have to have knee surgery and started taking this Liquid Biocell Collagen from Jusuru before then and did not need to have the surgery as it relieved my pain as well as gave me back my mobility in my joints. It is an all natural product so not many doctors know about it yet but that is changing as there is many clinical studies on it and word is spreading among many types of doctors. Here is what one pioneer orthopedic surgeon says and also results from a clinical trial. BioCell Collagen Improves Joint Mobility Clinical trials show that BioCell Collagen improves joint mobility, reduces stiffness and discomfort, helps rebuild cartilage and connective tissue and promotes joint lubrication. In an 8-week human clinical trial, 90% of subjects with chronic joint discomfort experienced a 40% improvement in physical activity and with continued use many experienced significant mobility. A 10-week trial enrolling subjects at an advanced stage of arthritis showed that more than 70% experienced a significant reduction of joint symptoms, improving their daily activities. Louis P. Brady, MD is a graduate of Emory University School of Medicine and Board Certified in Orthopedics. He is an Associate Clinical Professor at the University of Central Florida College of Medicine. Dr. Brady states: “BioCell Collagen reduces discomfort, increases the range of motion of the joint and seems to slowly restore damaged tissue. As more orthopedic surgeons begin recommending it to their patients, I can see the incidence and severity of one’s joint problems, as we know it today, gradually declining. Is it only for people with joint problems? Not at all. By improving joint health, you can help prevent deterioration that comes with athletic activity, strenuous work and aging. I believe that liquid BioCell Collagen is the most remarkable nutraceutical for joint support that has ever been introduced to the market.” If you want more information you can go to www.restorecollagen.com It is only sold through distributors though but is worth it to have relief and they do have ways to make it affordable. I hope this will be of help to you. Take care, Jim -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Arthritis ?
Hi Suzieq, I forgot to mention that anything that you eat or drink that contains purines can cause the gout. There are several that are very high content of purines. Sea food like crustaceans but usually not fish, Wine, and especially beer. Green leafy vegetables like spinich, then Mushrooms. Red meat, lunch meats. All of these can bring on a gout attack which will usually start while your sleeping. Then suddenly you awake about two or three in the morning with a terrible pain, usually in the lower extremities mainly at the side of your big toe but they could be anyware in any joint. At that point you will need to take a steroid like prednosone which is also bad for your kidneys, and I should know about that. You may want to go on line and find out which foods or drinks contain purines and avoid them. A good place to start is here: http://www.livestrong.com/article/328955-food-and-drink-high-in-purines/ Now mind you, just because the list of these foods and drinks may be over-whelming that doesn't mean that you must never eat them again. If you do have the gout then you will learn what and how much of that what you can or can not eat or drink. So, if it should end up as the gout there are treatments for it besides steroids, mainly Allopurinal once a day. It comes in either 300 mg tablets or 100 mg tablets. Your doctor will probably start you on 300 mg and see what if anything happens. If it does help (providing that you actually have the gout) he or she will probably reduce the dose to 100 mg and again see what happens. There is also another drug called Indocine that may help if you already experiencing a gout attack rather then the steroids. Just so you know if you take a steroid the pain will be relived within 20 minutes, but steroids sometimes can cause other problems. In a way, I do hope that it is the gout rather then any other type of arthritis because you will only have to be on Allopurinal rather then some other strong drugs, and you need to speak with your doctor/s about any other interactions with your TKI (Gleevec, or any other TKI) with any of these drugs I have already mentioned. By the way, I have never been on any TKI but rather had a bone marrow transplant more then 23 years ago, but I used to have the gout attacks very bad, and ever since I have been on Allopurinal (100 mg) have only had one or two very mild gout attacks. This information that I have written about is what happened to me. Since we are all different and use different medications what may be either good or bad for me may not be good or bad for you. You should always sit down with your doctor/s and have an informed discussion with them. 18,s Marty On Fri, May 17, 2013 at 6:28 PM, Suzieq sheila.a.wat...@gmail.com wrote: Marty: I found a bottle of Cherry Concentrate Juice, only have to mix two tablespoons with some water or whatever I want to drink. Course, it cost right at $18 for about a quart bottle, but will last a good long while. This grocery store is the only one I found that carries this juice. And, I did read labels and saw where most juices are flavored Apple juice or grape juice. You think when it says 100% Juice, that's what you are getting until you read the label and find out just what sort of juices are mixed together. LOL!!! Plus, bought some dried Cherries eat some of those as well as I bought a bottle of Cherry Wine. So, I think I did pretty good. :) There aren't any nice fresh Cherries available here yet, I looked. Normally, they cost as arm leg when they do first show up in the produce isle. :) I am going to discuss this matter of Gout with my Hem./Onc. when I see her at the end of the month. Keep Looking Up, Suzieq -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and
Re: [CMLHope] Re: Arthritis ?
Hi Suzieq, So happy to hear that your gout is respomding to the cherry juice and dried cherries. Cherries are back in season and I eat them like they are going out of season and haven't had any gout. Sorry that I am killing you with this advice but you now know that the one tip I gave you is really helping. So, get rid of the wine or any other alcohol you comsume and some of the other things and it will just keep on getting better. Of course you can eat some of these things but in moderation. If you feel any symtoms then you know you must cut back. Hope you grt on only 100mg of Gleevec and mybe you might not even need it anymore. Wouldn't that be great... 18's Marty On Thu, May 30, 2013 at 10:39 AM, Suzieq sheila.a.wat...@gmail.com wrote: Marty: You are just killing me:)All the things you mentioned comprise most of my diet.I usually have wine every evening..I eat Shrimp, red meat, Beef hot dogs, green leafy veggies, mushrooms, almost everything you mentioned. *smile*, no wonder I could have a problem with Gout if all these are causes. The Cherry Juice as well as eating a handful of dried Cherries seem to be helping a lot. I don't have the pain as bad in my left foot as bad as well as the pain I was having in the middle fingers on the right hand has disappeared. A lot of the pain I had running up and down my shins is gone I don't have the joint pain as much now. So, I am going to be changing up my diet now along with the Cherry Juice Cherries. Hopefully, I won't have to take any other drugs. I did talk to the nurse practitioner yesterday at my six month check up, she just couldn't see that the Gout wouldn't be because of the Leukemic Cells leaving as I've been none detected for quite some time now. But, she did put me down for a Uric Acid test for my next visit. I thought, good grief, that's six months away. She did tell me to continue on with the natural methods since they seem to be working for me. LOL!!! Most doctors want to push more pills at 'cha. On another note, my blood counts were all very good (red cells (3.4) platelets (190) were both running a bit low, but not bad). The whole visit went very well and as we finished up, I mentioned to her if the BCR-ABL comes back none detected again this time, could we think about dropping the Gleevec to 100mgs a day (I am on 200mgs for past year, before that I was taking 400mgs since the beginning.). I looked her in the eye and said It will be 10 years this January that I was first dx'ed. She said, That's right, it has hasn't it? Then she told me that if the test returns negative once again, that yes we could do that and she would call me and let me know. Whoo-hoo! That makes me extremely happy...This has been one long journey, that's for sure. It's good hearing from all of you and thank you for your comments and helpfulness. It seems that all the time I have been with CMLHope, I have received more helpful and useful information than I ever have from Novartis or my doctors. And with OBAMACARE soon upon us, I think it will come down to you and I helping each other more than being able to depend up on our doctors or insurances. Y'all take care and keep looking up, time is drawing near! Love you all, Suzieq -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Aspartame
Please read on, this may also be linked to Leukemia. This article doesn't make any distinction about which type of Leukemia, but still why put yourself at risk. Study Links Aspartame To Fast-Paced Decline in Kidney Function June 2, 2013 by Arjun A study published in the Clinical Journal of the American Society of Nephrology determined that sugar sweetened soda increases the odds for kidney function decline. You can read the entire study here. 3,318 women participated in the study for a number of years as they consumed diet soda that contained artificial sweeteners, most notably Aspartame. Two or more diet drinks a day led to a double risk in fast-paced kidney decline. The study was conducted by scientists from Brigham and Women’s Hospital in Boston. Another study published in the American Journal of Clinical Nutrition showed that aspartame is lniked to non-Hodgkin lymphoma and leukaemia. You can read the full study here, and we also wrote an article on it that you can read here. The dangers of aspartame, like many other things have been prominent since its inception. If one actually does the research instead of simple believing the marketing, it’s not uncommon to come to the conclusion that at the very least Aspartame provides us no benefit and has great risks attached. There are other options available, so why bother with Aspartame? Below is an excerpt from a previously posted article on Collective Evolution. Similar to fluoride in our water, it’s evident of our lack of public knowledge that we still allow a tremendous amount of harmful additives and toxins into what we choose to consume. It’s clear that aspartame should not be used in foods, and if you’re wondering why it continues to be used, you can find out below. It all starts in the mid 1960′s with a company called G.D. Searle. One of their chemists accidentally creates aspartame while trying to create a cure for stomach ulcers. Searle decides to put aspartame through a testing process which eventually leads to its approval by the FDA. Not long after, serious health effects begin to arise and G.D. Searle comes under fire for their testing practices. It is revealed that the testing process of Aspartame was among the worst the investigators had ever seen and that in fact the product was unsafe for use. Aspartame triggers the first criminal investigation of a manufacturer put into place by the FDA in 1977. By 1980 the FDA bans aspartame from use after having 3 independent scientists study the sweetener. It was determined that one main health effects was that it had a high chance of inducing brain tumours. At this point it was clear that aspartame was not fit to be used in foods and banned is where it stayed, but not for long. Early in 1981 Searle Chairman Donald Rumsfeld (who is a former Secretary of Defense.. surprise surprise) vowed to “call in his markers,” to get it approved. January 21, 1981, the day after Ronald Reagan’s inauguration, Searle took the steps to re-apply aspartame’s approval for use by the FDA. Ronald Reagans’ new FDA commissioner Arthur Hayes Hull, Jr., appointed a 5-person Scientific Commission to review the board of inquiry’s decision. It did not take long for the panel to decide 3-2 in favor of maintaining the ban of aspartame. Hull then decided to appoint a 6th member to the board, which created a tie in the voting, 3-3. Hull then decided to personally break the tie and approve aspartame for use. Hull later left the FDA under allegations of impropriety, served briefly as Provost at New York Medical College, and then took a position with Burston-Marsteller. Burstone-Marstella is the chief public relations firm for both Monsanto and GD Searle. Since that time he has never spoken publicly about aspartame. It is clear to this point that if anything the safety of aspartame is incredibly shaky. It has already been through a process of being banned and without the illegitimate un-banning of the product, it would not be being used today. Makes you wonder how much corruption and money was involved with names like Rumsfeld, Reagan and Hull involved so heavily. In 1985, Monsanto decides to purchase the aspartame patent from G.D. Searle. Remember that Arthur Hull now had the connection to Monsanto. Monsanto did not seem too concerned with the past challenges and ugly image aspartame had based on its past. I personally find this comical as Monsanto’s products are banned in many countries and of all companies to buy the product they seem to fit best as they are champions of producing incredibly unsafe and untested products and making sure they stay in the market place. Since then, aspartame has been under a lot of attack by scientists, doctors, chemists and consumers about it’s safety and neurotoxic properties. Piles of comprehensive studies have been completed that show aspartame is a cause for over 90 serious health problems such as cancer, leukemia, headaches, seizures, fibromyalgia, and epilepsy just to name a few. We have
Re: [CMLHope] Taking a break from gleevec after over 12 years
Hi Sylvia, First, welcome back to the group. How well I remember those good olden days of when gleevec first came out. Unfortunately it wasn't around when I was diagnoised with CML in 1989. The only thing at the time was interferon but for me it would have a blind study case weather I would get it or just a placebo. Since my WBC was well over 480K (480,000+) at the time and I wasn't sure if I would get it or not I opted for a bone marrow transplant. Not much choice in the matter. Anyway, since you were on gleevec for so many years do you know if you are PCRU now? I would imagine that you are but you still need to be tested to see if you are just as your doctor suggests. I actually don't blame you for wanting to stop the gleevec but you must be aware of the mutations that could come about. However since your doctor wants to test you for if you are PCRU within four months I think that is a wise choice. Nice to see you on Zavies Zero List. I hold the number one place on the list. I sure do miss him and Mommy Lottie as well. (from the c...@yahoogroups.com) Sylvia you just take one day at a time just as I do. After all, neither of us would still be hear if there were nothing in the arsenal to fight CML 18's (symbol for life) Marty On Mon, Jun 3, 2013 at 10:35 PM, Sylvia spguent...@rogers.com wrote: Hello everyone It has been many years since I have written to this group. I was diagnosed with CML in June 1998 at 37 years old and many friends I met through this group are no longer with us. Those were the days of interferon and ara-c, procrit etc (all via injection). I was one of the first to start Gleevec in Canada in April 2001. I am number 80 in Zavies Zero club! Gleevec has given me back my life and I am very thankful for it. That being said the last few months I have had swelling in my legs and stiff knees and I have taken myself off the Gleevec. In 12 years I have barely missed any days, but now I am feeling my body need a rest. I am worried about my liver and Millie's email reinforces my feelings that I need a break from the Gleevec. I told my dr and he wants me to come in for a PCR in a month and not wait until my 4 mos check up in Aug. I am very interested in what everyone in this community thinks and if they can offer me some advice. My prayers to Millie and all those with challenges. Thanks to everyone for their support all these years. Sylvia -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Taking a break from gleevec after over 12 years
Hi Angie, I wish you the very best of luck on your Gleevec holiday Yes, 12 years is a long time. 18's Marty Number 1 on Zavies Zero List. I sure do miss him. Disgnosed July 1989 Bone Marrow Transplant May 21St 1990 (23 years ago) On Tue, Jun 4, 2013 at 11:13 PM, ANGELYN ESDERS esd...@rogers.com wrote: I started Gleevec at McMaster University Medical Centre in Hamilton, Canada, on Jan. 22, 2001. My tests in June 2001 confirmed that I had reached cytogenic remission. I think I was #69 in Zavie's Zero Club. I am planning to discuss a holiday from Gleevec next time I see Dr. Walker, my hematologist at Juravinski in Hamilton. We shall see12 years is a long time What lies behind us and what lies before us are tiny matters compared to what lies within us Angie -- *From:* Richard H richard1huff...@comcast.net *To:* cmlhope@googlegroups.com *Cc:* CMLHope@googlegroups.com CMLHope@googlegroups.com *Sent:* Monday, June 3, 2013 11:25:59 PM *Subject:* [CMLHope] Re: Taking a break from gleevec after over 12 years That's great news. When I went off Gleevec 5 years ago. I was tested every month for a while then as I progressed with excellent results to 3 months and then 6 months. The body also responded nicely, I gained energy, lost 30 pounds and my leg edema went away. I am glad your ONC is willing to work with you. Richard H. On Monday, June 3, 2013 9:35:22 PM UTC-5, Sylvia wrote: Hello everyone It has been many years since I have written to this group. I was diagnosed with CML in June 1998 at 37 years old and many friends I met through this group are no longer with us. Those were the days of interferon and ara-c, procrit etc (all via injection). I was one of the first to start Gleevec in Canada in April 2001. I am number 80 in Zavies Zero club! Gleevec has given me back my life and I am very thankful for it. That being said the last few months I have had swelling in my legs and stiff knees and I have taken myself off the Gleevec. In 12 years I have barely missed any days, but now I am feeling my body need a rest. I am worried about my liver and Millie's email reinforces my feelings that I need a break from the Gleevec. I told my dr and he wants me to come in for a PCR in a month and not wait until my 4 mos check up in Aug. I am very interested in what everyone in this community thinks and if they can offer me some advice. My prayers to Millie and all those with challenges. Thanks to everyone for their support all these years. Sylvia -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Taking a break from gleevec after over 12 years
Hi Suzieq, I'm glad that my suggestion about eating cherries both fresh and dried is really helping you. You may also try some cranberry juice but first run it by your doctor. Cranberry juice helps flush out your kidneys. Just make sure that it doesn't contain any grape juice as an additive. If you are diabetec then be careful because cranberry juice contains a lot of sugar. Keep up the good work. 18's, Marty On Wed, Jun 5, 2013 at 4:01 PM, Suzieq sheila.a.wat...@gmail.com wrote: Sylvia: I certainly understand where you are coming from. We must listen to our bodies and do what is best. I have been on Gleevec since Feb. '04. Started out on 400 mgs. with only a one week break as my red cells and platelets dropped dramatically and they wanted them to come back up. I also gave myself a two week break a few Christmas's ago, but that has been it pretty much the whole time. It'll be ten years next January that I was dx'ed. A year ago, my doctor allowed me to go to 200mgs. and I've remained undetected. So, I just saw her one week ago, asked her if the test comes back none detected could I drop it to 100mgs. and she said she didn't see why not. I still feel that the Gleevec has expedited all this Arthritis that seems to be taking over my body in various places. It's just a feeling I have..I did not have any problems at all before. (And before somebody else brings up the Aspartame, no I do not use it in any of the stuff I eat or drink. If I use a sugar substitute at all, it's Sweet Low. That's usually only on my fruit if I have it or Oatmeal. I don't drink soda my tea or coffee is just plain. :) Thankful to those who brought up the Gout, since I've been eating the Cherries (they have them fresh in produce now, yay!!!), dried Cherries or drinking the juice, I am happy to say that a lot of the joint and bone pain has disappeared. I can remember the dull aching in the leg bones at night time or sitting with legs up...just awful. Don't have that anymore. This group of people has helped me more than my doctors and nurses have. So very thankful for each and everyone of you. Millie.you made me crack up laughing thinking of you the Hopper commercial of Grandpa setting on the throne with his legs up watching tv. Thanks! :) Thought I was going to have to go to the bathroom myself! :) I do hope that you have some good days soon...wished it was where I could come and stop in for a visit soonwe could laugh and laugh, that's for sure! :) Love to all Keep Looking Up, Suzieq -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Taking a break from gleevec after over 12 years
Hi Suzieq, Hey I want to know what your mother eats for breakfast. Being 81 and in relatively good health except for the falls says a lot about her. I am also happy to hear about your brother always being there to help her out. Shows very good charactor. Anyway, I will be leaving Florida tomorrow morning and drive up to my other home in North-East Pennsylvania so I probably won't be able to answer any emails until I get there and have everything set up. 18's Marty On Thu, Jun 6, 2013 at 12:22 PM, Suzieq sheila.a.wat...@gmail.com wrote: Marty: My mother suggested Cranberry Juice, too. But she thought for the Gout like the Cherry Juice. Then she said, Oh, that's for the kidneys:) She's 84 and still getting around pretty good down there in Florida. No more falls or broken bones. Last year was a bad year for that. She spent about 30 days in rehab after the last bad fall and, I think it was very good for her because they showed her how she was putting herself at risk and she's been a lot more careful. And, my older brother who is a bachelor goes over and spends the nights with her and does a lot of the cooking or taking her to the store or the doctor visits she needs to go to. I think her last fall that happened just four weeks after she had fell and broke her left upper arm scared him pretty bad. She was a nurse back in the late forties thru the sixties. Well, I'm rattling here, so guess I will close and go do what I got on the computer to do now. :) Suzieq -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Israel
Dear Marcie, What an exciting trip you had. I have been there a few years ago. 18's, Marty On Fri, Jun 21, 2013 at 10:08 PM, Marcie Goodman margoo...@aol.com wrote: Me in the hat and my sister at Haddasah Hospital, Ein Kerem, outside of Jerusalem, next to a line from one of my favorite Hebrew poems, A Woman of Valor, in Hebrew called Ayshet Chayil. It is believed to be originally written by Abraham as a eulogy for his beloved wife, Sarah. King Solomon included it in his Song of Songs. Marcie Sent from my iPad -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] My Update
YEAH!! Looks like your an 18's Marty On Tue, Jun 25, 2013 at 3:15 PM, Richard H richard1huff...@comcast.netwrote: My tests show a sharp *decrease* in counts indicating that my Gleevec vacation is going to continue. I will complete my 5th year off Gleevec next week. I will be testing again in December. I will be able to complete 5 ½ years off Gleevec. YEAH!! ** ** For those still struggling with issues, I remember you daily during my reflection period. Richard H. ** ** dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .007 Gleevec 1/08 -5/08 Gleevec Vacation 7/08-Present 11/8 RBC 8 QT-PCR .003 4/09 QT-PCR .00156/09 QT-PCR .00219/09 QT-PCR .00281/10 QT-PCR .001 4/10 QT-PCR .00468 10/10 QT-PCR 1.049% 2/11 QT-PCR .0612% 8/11 QT-PCR 2.616 %2/12 QT-PCR 2.410% 8/12 QT-PCR 9.183% 4/13 QT-PCR 4.57% 6/13 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Fatigue
Hi Wesley, First, I have never been on any of the TKI's but had a bone marrow transplant more then 23 years ago. So that you understand more about fatigue, it could be caused by a lot of things but in your case I would suspect that the Gleevec may be playing havoc with your red blood cells as well as your hemoglobin. A simple CBC could be a very effective tool to determine if you are anemic. If so then I would urge you to speak to your doctor and ask if he or she may want to put you on either Epogen or Procrit. If your hemoglobin is at or below 10 then I think that may be of help to you. That is if either of those will not effect the Gleevec. 18's Marty On Wed, Jun 26, 2013 at 12:53 PM, Wesley Simon gm.wes...@gmail.com wrote: Morning everyone, I have been silently following this email list for a while. I work in the computer industry and am well aware that anything we write on here will be searchable and viewable by the entire world, so I have been hesitant to write. My question is about fatigue. Does anyone take anything to combat the fatigue caused by gleevec? I read about research somewhere in Texas where they're trying a narcolepsy drug called Nuvigil to combat fatigue in patients taking gleevec. The research is ongoing and closed to new patients. I called my doctor's nurse and asked about something to fight this fatigue and the doctor told the nurse to tell me there is nothing that can be done about it. I don't believe this. In fact, the research I mention above contradicts my doctor's view. My next appointment is in August, I'd like to have some information to take with me so that I can have a potential solution in hand when I see the doctor. I don't have much faith in my doctor. I do believe he understands what he is supposed to prescribe and what the numbers mean, but I don't think he has any experience in treating side-effects. After two years on gleevec, my number is 0.03% and slowly decreasing. Unlike many of you, I have no desire to take a drug vacation. My side-effects, other than fatigue, have been minimal. I'd rather treat the side-effect than change my dose or change the medication. I look forward to your input. Have a great day! \Wes -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Fatigue
Hi Marcie, Since I am on dialysis I get Epogen at almost every treatment. Even though it is a low dose my doctor wants to give me at least twice the amount but Medicare will not allow it. This also seems to be the case with you as well. I don't know what insurance you have but it all filters down to money and our wonderful health care system. You may also want to ask if you could receive Iron injections. It is much less in cost to Procrit and Epogen and it may help your system. Also if your not diabetic instead of drinking eight glasses of water throughout the day why not drink four glasses of cranberry juice (great for the kidneys) and four glasses of water? You may want to stay away from a lot of caffeine and try to get along with a bit less of it in your diet. I know you mentioned that you eat a healthy diet but does include things that are high in iron? Dark green leafy vegatables like kayle and spinich. Red meat and anything with high amounts of iron. I wish you well. We have just about setteled in here so it is the rest of the summer to try and enjoy. 18's, Marty Even with an 11 HGB I still feel lousy. Once I get up to 12 (rarely) then I begin to feel better. On Wed, Jun 26, 2013 at 8:55 PM, Marcie Goodman margoo...@aol.com wrote: Hi Marty, I don't know if any if our fellow warriors have experienced this but about a year ago, maybe longer, my onc told me that protocols had changed and I could no longer receive Procrit or other red cell injection as an out patient. It can only be given if you are admitted to the hospital. Perhaps this is just in Maryland or just at the cancer center where he practices. I have always been told that my magic number was 11. If under that, I used to get Procrit injections. And I was still tired. Now, it has been a long time without and my red cells usually hover around the 10 to 10 point something mark. Fatigue is part of my life but I'm used to operating on a caffeine fueled morning and after that 8 glasses of water throughout the day and night and a healthy diet. Obviously, this is not a one size fits all answer. Hope you are doing well. How are things going now that you are at your summer home? 18s, my friend. Marcie Sent from my iPad On Jun 26, 2013, at 8:24 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Wesley, First, I have never been on any of the TKI's but had a bone marrow transplant more then 23 years ago. So that you understand more about fatigue, it could be caused by a lot of things but in your case I would suspect that the Gleevec may be playing havoc with your red blood cells as well as your hemoglobin. A simple CBC could be a very effective tool to determine if you are anemic. If so then I would urge you to speak to your doctor and ask if he or she may want to put you on either Epogen or Procrit. If your hemoglobin is at or below 10 then I think that may be of help to you. That is if either of those will not effect the Gleevec. 18's Marty On Wed, Jun 26, 2013 at 12:53 PM, Wesley Simon gm.wes...@gmail.comwrote: Morning everyone, I have been silently following this email list for a while. I work in the computer industry and am well aware that anything we write on here will be searchable and viewable by the entire world, so I have been hesitant to write. My question is about fatigue. Does anyone take anything to combat the fatigue caused by gleevec? I read about research somewhere in Texas where they're trying a narcolepsy drug called Nuvigil to combat fatigue in patients taking gleevec. The research is ongoing and closed to new patients. I called my doctor's nurse and asked about something to fight this fatigue and the doctor told the nurse to tell me there is nothing that can be done about it. I don't believe this. In fact, the research I mention above contradicts my doctor's view. My next appointment is in August, I'd like to have some information to take with me so that I can have a potential solution in hand when I see the doctor. I don't have much faith in my doctor. I do believe he understands what he is supposed to prescribe and what the numbers mean, but I don't think he has any experience in treating side-effects. After two years on gleevec, my number is 0.03% and slowly decreasing. Unlike many of you, I have no desire to take a drug vacation. My side-effects, other than fatigue, have been minimal. I'd rather treat the side-effect than change my dose or change the medication. I look forward to your input. Have a great day! \Wes -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group
Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon
Hi Skip, I'm so happy to hear that your feeling better. You just continue to keep on getting better each and every day. May GOD bless you in a million ways. I haven't been feeling well myself. I go for dialysis and after each treatment my blood pressure drops to about 80 over 62 or so. It also effects me the next day. I spoke to the doctor and he told me to stop taking my prostate medication (Terrazosin Generic for Hytrin) because it also has a blood pressure medication in it. He gave me a prescription for Flomax and I sent it to my pharmacy company. I should be getting it soon so I will give it a try and see what happens. In the meantime I have been drinking Gateraid and eating some salted popcorn and they really do help me get my blood pressure up into the normal range. Tomorrow (Wednesday) is another treatment day for me so I will see what happens. Thank you for your concern and have a very happy and healthy 4th of July. 18's, Marty On Tue, Jul 2, 2013 at 8:22 AM, icandoall...@aol.com wrote: ** Good luck SkipD, We are all continuing the battle everyday 24/7. I am doing really well and Spycel and except for a few minor things, getting along good. Hang in there, Blessings, Jeanie3 In a message dated 4/17/2013 1:20:30 P.M. Eastern Daylight Time, skipd_2...@yahoo.com writes: Hello Marty, and all sorry I have not been keeping tabs with the Groups but I have been rather ill for a while, although I must admit today I feel much better today than in months. going back over me email I do not see much in the way of email, is there a problem with what I receive or is it that cml 2 and hope are just being quiet... MARTY how are you feeling, I do hope your well. Anyway I am slowly getting back SkipD *From:* Marty Gartenberg wa2...@gmail.com *To:* cmlhope@googlegroups.com *Sent:* Tuesday, April 16, 2013 11:20:06 AM *Subject:* Re: [CMLHope] Re: Gleevec patent coming to an end in U.S. soon Hi Peg and everyone else. Just so you know, Novartis was sued by some people in India over the patent rights of Gleevec and they won the law suit. Now, this means that India is now allowed to use a generic drug instead of the original Gleevec. So, with this said, Gleevec may just become a thing of the past with a generic drug and ends up costing much less. 18's (symbol for life) Marty On Tue, Apr 16, 2013 at 9:37 AM, peg peg@live.com wrote: Hi All, Been out of the loop for a while, but wanted to add my two cents to this post about Gleevec patent. The end of the patent on any TKI is going to be a mixed bag. While the development of a generic will dramatically bring the cost down on that generic, it will pose a real problem for those on the other TKI's still under patent. Once the cost playing field is no longer level, you will find that insurance formularies will no longer approve the non-generic TKI's, opting for the lower cost one...under the assumption that all TKI's are equal. While some folks will fight for and be granted exceptions, based on previous trial with Gleevec, others of us will not. To grant an exception is to the discretion of the insurance company. The idea that all TKI's are equal is a wide-spread idea in many countries, some refusing to grant use of TKI's that the manufacturer would not negotiate lower pricing. While there is always patient assistance programs available, only some will qualify, and even then just having to go through that change will be unnerving for those of us who's live depend on the drug we are currently taking. Like always, we must be careful what we wish for! Warmest regards to everyone! peg Currently PCRU on Sprycel 50mg every other day. On Monday, March 11, 2013 11:30:24 AM UTC-7, Vivi wrote: Unfortunately, the U.S. Food and Drug Administration is making it extremely difficult for bio-similar generic drugs to be produced and marketed in the U.S. I'm not familiar with the regulations in Canada but it's possible we won't see a generic of Gleevec all that soon in the U.S. -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to mailto:cmlhope%2bunsubscr...@googlegroups.comcmlhope%2bunsubscr...@googlegroups.com . For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com/ - You received this message because you
Re: [CMLHope] Hi Marty
Dear Millie, I wish you good luck with your upcoming tests. Funny you should mention Monday, Wednesday and Friday. Those are my dialysis days. You and I and just about everyone here simply has to do whatever we all need to do. Stay alive but also try to live our lives as best we can. It sounds like you have a good son. May GOD bless him and you. 18's, Marty On Wed, Jul 3, 2013 at 7:37 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi MartyWhat do you think of this warm humid weather in PA. Not a lot different then in Florida these days. I know that you're having some issues with your health and I'm hoping that they are ones that you can deal with. You have had so much over the past years and it seems like we can't deal with anymore at times, but we do. I go for my biopsy on Friday morning, leaving here around 6:30 to arrive in Allentown at St. Lukes by 8:00 A.M. With the traffic at that hour, we have to leave that early. Probably will hit the rush hour coming home too as they plan on keeping me in bed there for at least 4 hours, and the procedure will take an hour or more, plus the prep, etc. so it will be about 6 hours that my son will have to wait for me. I feel for him, but he says he doesn't mind. My legs and ankles are so swollen, so I am doubling my water pills tomorrow and hope that helps. I usually double them on Mon. Wed. and Friday, but since I'll be there all day on Fridayor a good part of it, I'll double it tomorrow and hope to be able to get shoes on Friday morning. We all have fights on our hands and why should it be any different for me? I just try to deal with what isand that's the best I can do.* ** *You take care, my friend, and stay well...or as well as you can. I do keep all of you in my daily prayers and hope that it helps. Can't hurt!! Wish I could be with my little ones, but can't make that 2 and a half hour trip at present. Hopefully, when this is all over with I'll be able to go see them. My son brings them when he can, but his job, family, and all of the kids sports, camps, etc. keep him running. He is also one of the leaders for his son's boy scout troop. Rick is an eagle scout, and after collage was offered a job with the Boy Scouts of America, but turned it down. At any rate he keeps busy.* ** *Hope to see you on line soon. Hope you and your wife have a great summer.* *18's to you both,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug
Skip, your like the rock of Gibralter! 18's Marty On Wed, Jul 3, 2013 at 9:29 AM, Skip Duffie skipd_2...@yahoo.com wrote: *.Hello all * *thanks for including me in your email. I was on sprycel and after while I had to have my chest drained.* ** *over a two month period I had to have 8.5 lts of fluid removed. So they had to take me off sprycel.* *I understand a lot of people who are on it have great results. It was the same for Imatinib, and Nilotinib.* *but on the good side I am on nothing now. My platelets yesterday were 13 and I received a bag.* *As it stands I receive 1 unit of RBC once week and twice weekly I receive a bag of Platelets.* *on the plus side my life is great. I have no problems, It takes me a few hours at the hospital twice weekly, where I am looked after like a rock star. I am spoiled. I just have to be careful not to play football* *or bang my head. I do have to be careful around my grandson he is a 3 year old wrecking crew.* *I wish you a wonderful life even with CML. In my case I did not think I would live beyond 1978 * *so I was warned, For those who do not know I was put on Myleran way back and was on it* *every year for about two three months, my counts would drop and slowly go up until I needed * *to be put back on Myleran (Bulsufan)* *Skip Duffie* ** ** thanks Jeannie, I am on sprycel again as mentioned..at 50 - 60 a day. In PCRU for the first time in 3 years. Toxicity has been cpk elevated to 400...so muscles are constantly wasting and that makes me a kind of muscular tired different than other TKI's, eyebrows lost, hair loss, skin terribly dry, slightly more elevated liver enzymes but still in normal range. The biggest challenge is pain in the body with the elevated cpk. I have tried tramadol, but it goes through the liver and Tasigna gave my liver such a hard time, that I am protective of it, even though my liver numbers are fine.Regarding your question, In the fall, I started to feel worse and worse, could hardly get up and move, at 40 of sprycel..I had been on it for 2 years...minus a couple of holidays for surgeriesI had to go off everythingecho cardiogram showed the start of a possible developing problemin left ventricle...I went of Sprycel for 7 weeks, went on bosutinif for 7 weeks, then back on sprycel four days later after blood work showed bosutinif did not work for me..I also had another echo cardiogram and it was fine, so it resolved off of the meds for a couple of monthsI was on a low dose becuase that was all that could be tolerated by my body...50 of sprycel did not put me in remission, but 70 for one month,and 60 for two months. did..so I know how much I need to take for complete remission,, it's just if my body will allow me to. I have eye swelling, and calve swelling that I did not have on 40-50 that I have with 60-70 a day...so...I will be dosing down...and not worry about CMM, be happy if I stay in MMR and live well with less toxicity...most people never have the elevated cpk, or muscle issues, fatigue yes, but not this..so try not to worry, I am an odd bird when it comes to drug sensitivity.. have many issues others don't. Just the luck of the draw...I do most of the things you suggest already,bu trwill try castor oil and see if that helps..thanks so much for your note, be well Jeannie, Beth -Original Message- From: ICANDOALLTTC icandoall...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Jul 2, 2013 7:54 am Subject: Re: [CMLHope] Skip Duffie to beth and all Sprycel and new drug Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. I battled with Gleevec for almost 5 years and then on Tasi for a few months. I was on 100 mgs daily and my onc didn't want me to cut down but I took it upon myself to cut down to 50 mgs daily. I haven't had the muscle problem yet, but feel it could be lurking there close by. Here's what I do nightly; get some organic castor oil and massage you feet and legs with the muscle area nightly. Do this twice a day if you can. Do it right before you turn in for the night. Of course eat well, and eat yogurt daily. If you are low on calcium get some good organic calcium in a liquid form, the one that isn't constipating and take a small dose daily along with some magnesium, Get a little sun on your long bones daily if you can. Walk if you can. Walking will help the headaches also; I suffer from them too and Sprycel makes them worse. Have you tried Tamadol for pain. I take it daily and it helps so I don't have to take any of the nsaids which we aren't suppose to take. It's a pain pill that you take before the pain begins. It can cause mild itching. Thanks for you input on the new drug. I thought that was the one that didn't have that many side effects. What was your toxicity to Sprycel? Blessing Beth, Jeanie3 In a message dated 4/19/2013 1:28:51 P.M. Eastern Daylight
Re: [CMLHope] An update on the pain
I also wish you the best of luck with your liver biopsy. I am praying for you. 18's Marty On Thu, Jul 4, 2013 at 5:12 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Suzieq,* *I have had those injections in the past, and for years they worked for me most of the time. I have given up on pain management as there's only so much that they can do. With my heart condition, I wasn't allowed to go any further as pain management wanted to do a procedure that required disabling my pace maker and my Cardiologist wouldn't let them do it. After all of that, they just gave me pain killers, and I figured that my Family Doctor can do that, so that's where I am at present. I hope and pray that you can get relief from your pain. I also found that sometimes the injections work for a short term, and other times much longer, so it depends on if they hit the right spot when they give them to you. I didn't mind the painas I only felt a lot of pressure when they gave them to me. Let me know how they are going for you.* ** *I have my liver biopsy scheduled for tomorrow morning, but have to allow a couple of hours to get to the hospital as it will be rush hour and Allentown, where I have to go, is a good size city with lots of traffic. I pray that the procedure goes well for me. It will take about 6 hours. The first couple will just be getting ready for the biopsy, and the rest is just staying in bed for 4 hours to see if there's any post op problems such as bleeding. I'm not looking forward to any of this, but need it done, and will be happy to have it behind me.* ** *You take care. I'll let you all know what the results are when I can. I was told to stay off of my feet for a couple of days and not to lift anything, so I will listen.* *Many hugs, Millie (I always think that hugs are a good thing)* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] The Keeper
Your welcome Beth 18's, Marty On Sat, Jul 6, 2013 at 1:34 AM, bkbar...@aol.com wrote: Dear Marty, I so appreciated your keeper story..just loved it.. Thanks so much for sharing. Beth -Original Message- From: ICANDOALLTTC icandoall...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Wed, Jul 3, 2013 9:20 am Subject: Re: [CMLHope] The Keeper Great story and so true. My hubby died from heart disease complicated by diabetes. I was always there for him and wished he could be here for me. Some things just aren't meant to be, and thank heavens if this CML hasn't taught us anything else, it has taught us to treasure what we have right now this minute of the day. Thanks again, Jeanie3 In a message dated 4/21/2013 2:59:49 P.M. Eastern Daylight Time, wa2...@gmail.com writes: This is actually the story of my life. You are all my friends and I value your friendship and wanted to share this with you. Now, before you read the rest let me explain what a keeper really is to me. Anyone can be a keeper. I have seen it many times, a wife helping her husband, a husband helping his wife. A friend helping his or her friend. People that really care about each other trying to always be there for them to help. However, I have also seen the opposite. I have seen that sometimes when people become ill then their partner or friend decides to leave. When I was going through my bone marrow my wife Shelly never waivered, but some of my so called friends decided to leave, and I never forgot. It is these kinds of people that were never keepers to begin with. I read and see the love and compassion of the people on this site and I am simply amaized in seeing one human being selflessly helping another human being. When one has some problems and another can comfort that person then they are what I would call a keeper. 18's Marty Dear Keeper, I grew up in the 50's with practical parents. A mother, God love her, who washed aluminum foil after she cooked in it, then reused it. She was the original recycle queen, before they had a Name for it... A father who was happier getting old shoes fixed than buying new ones, which we couldn't afford anyway, but in spite of that we still made due. Their marriage was good, their dreams focused. Their best friends lived barely a wave away. I can see them now, Dad in trousers, tee shirt and a hat, and Mom in a house dress, broom in one hand and dish-towel in the other. It was the time for fixing things. A curtain rod, the kitchen radio, screen door, the oven door, the hem in a dress, things we keep. It was a way of life, and sometimes it made me crazy All that re-fixing, eating, renewing, I wanted just once to be wasteful. Waste meant affluence. Throwing things away meant you knew there'd always be more. But then my mother died, and on that clear summer's night, in the warmth of the hospital room, I was struck with the pain of learning that sometimes there isn't any more. Sometimes, what we care about most gets all used up and goes away...never to return. So... While we have it.. it's best we love it... And care for it And fix it when it's broken And heal it when it's sick. This is true... For illness, For marriage And old cars... And children with bad report cards. Dogs and cats with bad hips And aging parents. And grandparents. We keep them because they are worth it, because we are worth it. Some things we keep. Like a best friend that moved away or a classmate we grew up with. There are just some things that make life important, like people we know who are special. And so, we keep them close! Good friends are like stars You don't always see them, but you know they are always there. Keep them close -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are
Re: [CMLHope] An update on the pain
Dear Millie, I think that your doctor gave you some sound advice. Just try and take it easy and you must learn to do that each and every day. Anyway, I am glad to hear about your son. I know that it must have been very difficult loosing your daughter and having to bring up her son as you and him made a family together with the rest of your children. Sometimes GOD does work in mysterious ways... A little story: My sister had severe mental disease and was in many mental institutions for most of her life. I managed all of her affairs and took care of her. Then I got Leukemia and no one of my family was a match for me. I am talking about my brother who was my other possible match for a bone marrow transplant. Well she turned out to be a perfect match with me. So after much trial and tribulations she turned out to save my life. Unfortunately, after several years she died. Nothing to do with her donation but her toxicity to all of the medication she was on. So, I always ask myself why was it her instead of my brother that was a perfect match? My conclusion is that things were meant to be, and GOD works in mysterious ways. Your daughter, her son, you, my sister me? Let me teach you a Hebrew word, BASHERT meant to be... 18's Marty On Sun, Jul 7, 2013 at 12:17 AM, C.M. Houtz ho...@ptd.net wrote: ** *Thanks MartyYou always have a way of making my day better. I will take one day at a time, and hope for the best. I've been taking it easy today, as that was my instructions from the doctor. I might even take tomorrow off too.My son, Christopher, helps me so much and I am blessed with having this wonderful son in my life. God has his reasons for everything and he gave me Chris for this time in my life. I don't know if I ever told you that he was my daughter's son. She was killed in a car accident before he was two and has always been with me as she was in the process of divorcing her husband. He didn't want him, so I fought to keep him and have never regretted it. He's brought me nothing but joy. In his eyes, and heart, I am his MOMand I feel the same about him. My other sons accepted him as a brother from the start, so we are so fortunate in so many ways. I'll keep you up on the results. You and your wife enjoy your stay in PA. I hope only the best for you.* *18's back to you,* *Many hugs too,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] An update on the pain
Hi Millie, I have come to know that there aren't any coincidences in life just things that are meant to be. The Hebrew word for that is BASHERT. So, for example, your husband is 83 years old. He went through a very bad accident many years ago and he is still doing fine, thank GOD. This simply was BASHERT. Yes Millie, there are miracles, one just has to open up their eyes to see them. 18's Marty On Wed, Jul 10, 2013 at 3:52 PM, C.M. Houtz ho...@ptd.net wrote: ** *Yes, Marty, I believe that God does things that we find hard to believe. One time in Morocco, my husband was in a very serious car accident and fighting for his life in a Navy Hospital. The Navy Chaplin came by, and his exact words were.Yukas most of his injuries were to the head. That's all I got from him. Latereither that day or the next, I saw a priest standing by the bed...I'm not catholic...and I looked up at him, and it was Father Tully...a Navy Chaplin that was on the island of Guam when I was in my teens. He and the protestant Chaplin use to argue on my being converted to Catholicism. It was all in good fun as I was the soloist with the choir. At any rate, he prayed with me for a long time, and I never saw him again, or tried to find him. A day later an African American man came by and talked to me. He was the father of 2 kids that I was friends with in high school on Guam. He also was kind and tried to tell me that everything would be okay. I was so upset over everything that I just accepted that they were there. After that, it was months of traveling to Spain and Germany to get my husband the help that he needed. Years later, I wondered if those people were ever there, or just sent by God to help me through a very bad situation. There was no family there for me to lean on and being in a foreign country was difficult. Oh yes, the other thing that happened was I told my husband, while he was in a coma, that I was pregnant, and there was no way I could have known at that point. I was, and he survived after lots of surgery, etc. He's 83 now and still doing well. I do believe in miracles and know that they can still happen. Only lately, am I thinking about all of this and wondering what really happened. You take carewe all need you in our lives.* *Hugs 18's* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope]
Hi Marcie and everyone else. What else can I say about having to go through life having CML? Well, there is actually a lot that I can say about having CML. So, let me start... You have to remember having and living with CML is no longer a death sentence as it once was. In 1998 when I was first diagnosed it was. Little did I know that one day there would be something that there would be able to take like Gleevec or any other TKI that would be able to give me my life back instead of having to go through a bone marrow transplant and having to live in a very small 5 by 9 plastic bubble in a hospital for seven months not knowing if I would live or die. I am not even going to go through what I went through because that would be counter productive for everyone. Even though, I suffered greatly with many of the symptoms you describe. Even so I had the upper hand because of how I was able to train my mind to be able to overcome just about everything that I was going through at the time. My memory loss was so bad that while I was trying to speak a sentence I was unable to remember the next words in that sentence while I was talking. Talking about how frustrating that was is very difficult to describe. And I was only 45 years old at the time Even now, I have kidney failure but I simply choose to deal with what I have knowing that no matter what I may be going through I just have to deal with it and simply try to live my life as best as I can, which is what I try and do. So with that said I want all of you to realize that no matter what you might be going through your still alive and able to keep it that way until something better comes along. What I mean is that with all of the recent advances that have come along, being able to deal with your disease is now your chance for living your life until something better comes along like a cure. And there is no doubt in my mind that it will come along. So I leave you with my two numbers that represent life. 18's Marty On Sun, Jul 14, 2013 at 12:11 AM, Richard H richard1huff...@comcast.netwrote: I love to use this statement I had a mind like a steel trap when I speak of my memory loss. I now add and now it make a good strainer. I hope tou get a chance to go down to 400mg Gleevec. Richard H. On Saturday, July 13, 2013 8:10:09 AM UTC-5, caselmar wrote: Hi Millie: I've lost a lot of eyelashes and brows, too. Even have done false lashes when I had a wedding to go to. Part of the problem I see with people is that almost everyone knows someone who has had cancer. Most of those patients either had infused chemo and/or radiation. So they were bad but a point came where they recovered and life went on. For us, at least for me, there is no chance in the near future that I'll be off of Gleevec. Our problems and side effects often take time to occur, memory loss is one for me. I had a mind like a steel trap. Now, I can remember long term things but short term is going faster than a speeding bullet. People who don't get it tell me it is normal at my age to start losing your memory. I know that as you age your memory may worsen but at 61, I don't think so. Plus, I can tell it is a rapid increase in what I am forgetting. My bone pain and muscle cramps are very severe, and naturally the fatigue is far worse. I wonder if one day sooner rather than later I'll be in a wheelchair or on a walker. Sometimes I can't zip up a dress or coat, even if it is front zip. If it is a back zip, forget it. My husband needs to be here to help with that. I can't hook bracelets or necklaces. None of this is major because I'm so grateful to be alive. But it is still a quality of life issue. I tend to have bad Gleevec stomach. I try to stay away from foods that trigger it. But being from Maryland, I love steamed crabs. I eat them but somewhere within a 15 minute drive to my house so I can use my own bathroom when the diarrhea hits. There is no spontaneous planning because I always have to look at how far I'll be from home because of this. That's the kind of stuff I'm talking about that people don't get. They see me and think, well she works, she looks pretty good for someone with leukemia, must not be too bad. And for the most part, they are correct. I have a positive attitude and feel very blessed to have an illness that is manageable. CML has made me appreciate every single day. Hope your results from the biopsy come in quickly. I know my bone marrow results came in yesterday but my onc didn't call. He and I have a wonderful relationship so I'm assuming that he just didn't get a chance to look them over. He is one of the team doctors for the Baltimore Orioles and he may have been at the game yesterday. Normally I don't worry about the results but he has agreed that if they are good, he's going to try and take me down from 600 mg of Gleevec to 400 for a trial period of 3 months. Hoping that will help with the side
Re: [CMLHope]
Hi Marcie, Yes I do know how Zavie had set up everything. I was a part of it. We used to use skype and would all meet up on Tuesday evening at 7:30 PM. If only one person buys the multiparty part of it then everyone can get on at the same time and speak to each other, up to I believe six people at one time. I have been on skype for many years so if you or anyone would like to skype me then just go on and download skype and do a search for me. just put in my email address and it will find me and send me a message to include you into my contacts list. Once I see it I will then recognize you and we are all set. You will need a microphone and a web cam but not necessary it you just want to use voice over skype. 18's Marty On Sun, Jul 14, 2013 at 9:29 AM, margoo...@aol.com wrote: Hi Marty: I'm sure I speak for all of us when I say that I, too, wish there had been a TKI when you were diagnosed. But being the warrior that you are, you have such a positive attitude. Plus, we all feel the love and compassion you constantly extend. Do you know how Zavie set up the conference calls? I'd love to start that up but don't know how. I intend to find out because I think it would be fantastic if our group could have a conference call at least once or twice a month. Take good care. Much love and 18s, Marcie -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Sun, Jul 14, 2013 8:05 am Subject: Re: [CMLHope] Hi Marcie and everyone else. What else can I say about having to go through life having CML? Well, there is actually a lot that I can say about having CML. So, let me start... You have to remember having and living with CML is no longer a death sentence as it once was. In 1998 when I was first diagnosed it was. Little did I know that one day there would be something that there would be able to take like Gleevec or any other TKI that would be able to give me my life back instead of having to go through a bone marrow transplant and having to live in a very small 5 by 9 plastic bubble in a hospital for seven months not knowing if I would live or die. I am not even going to go through what I went through because that would be counter productive for everyone. Even though, I suffered greatly with many of the symptoms you describe. Even so I had the upper hand because of how I was able to train my mind to be able to overcome just about everything that I was going through at the time. My memory loss was so bad that while I was trying to speak a sentence I was unable to remember the next words in that sentence while I was talking. Talking about how frustrating that was is very difficult to describe. And I was only 45 years old at the time Even now, I have kidney failure but I simply choose to deal with what I have knowing that no matter what I may be going through I just have to deal with it and simply try to live my life as best as I can, which is what I try and do. So with that said I want all of you to realize that no matter what you might be going through your still alive and able to keep it that way until something better comes along. What I mean is that with all of the recent advances that have come along, being able to deal with your disease is now your chance for living your life until something better comes along like a cure. And there is no doubt in my mind that it will come along. So I leave you with my two numbers that represent life. 18's Marty On Sun, Jul 14, 2013 at 12:11 AM, Richard H richard1huff...@comcast.netwrote: I love to use this statement I had a mind like a steel trap when I speak of my memory loss. I now add and now it make a good strainer. I hope tou get a chance to go down to 400mg Gleevec. Richard H. On Saturday, July 13, 2013 8:10:09 AM UTC-5, caselmar wrote: Hi Millie: I've lost a lot of eyelashes and brows, too. Even have done false lashes when I had a wedding to go to. Part of the problem I see with people is that almost everyone knows someone who has had cancer. Most of those patients either had infused chemo and/or radiation. So they were bad but a point came where they recovered and life went on. For us, at least for me, there is no chance in the near future that I'll be off of Gleevec. Our problems and side effects often take time to occur, memory loss is one for me. I had a mind like a steel trap. Now, I can remember long term things but short term is going faster than a speeding bullet. People who don't get it tell me it is normal at my age to start losing your memory. I know that as you age your memory may worsen but at 61, I don't think so. Plus, I can tell it is a rapid increase in what I am forgetting. My bone pain and muscle cramps are very severe, and naturally the fatigue is far worse. I wonder if one day sooner rather than later I'll be in a wheelchair or on a walker. Sometimes I can't zip up
Re: [CMLHope] Hi
Millie, Sorry to hear about your liver problems. Yes they do transpalnts even if you have CML. Just so you know the liver would probably come from a cadaver also you can get part of a living persons liver so if you know anyone that has the same blood type as you do and they are willing to donate to you then you should have them tested. Unlike a bone marrow transplant which basically doesn't require a blood type match, a solid organ does. I am in the same position as you are but for a kidney transplant I may have a donor back in Florida. I will be going back there in the middle of September and I should know more once I return. I wish you the very best of luck 18's times 18's for you Marty On Tue, Jul 16, 2013 at 10:59 AM, C.M. Houtz ho...@ptd.net wrote: ** *Hello to everyone. I didn't get on here yesterday as I was sick to my stomach (from what I don't know), and still have it a little today, but not as bad. I did see my Oncologist and he was able to get the results of my biopsy. Well, it is cirrhosis of the liver and so we have to deal with it. Since I've been on Tasigna for 6 years he is confused as this would normally happen during the first year on the drug, so we have to find out how to deal with it. He's going to call the people that make the drug and see what they can find out. Meanwhile, I'm off of the Tasigna until further notice. He did blood work, so he'll call me with the results when he gets them. He is also going to put me on the list for a liver transplant. I didn't think they would consider that at my age, and with my other health issues, but he says that they will. He works for Geisinger Hospital, which is huge in this area and they do lots of advanced things, so we shall see. I went to their new cancer clinic in Pottsville, and it was nice and brand new, so it was a pleasant experience. * ** *Your prayers, etc. will be appreciated. I just have to deal with what is. That's what we all do, so nothing new..! * ** *Talk to you soon.* *Many hugs,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope]
Hi Richard, Well to be honest with you I must have been cut from the same mold that you were. However, there is one big difference. I am on dialysis and my energy level is next to nothing after my treatments and for the next day afterward then it's back again to another dialysis treatment and so on. Here is the difference... I do not let this control me because I just try working through this and so can you if you really want to give it a try. No one says that you must exhaust yourself with exercise but you should try doing some even for five minutes each day. After a week or so simply increase it to ten minutes a day. Try getting onto a stationary bike or even a tread mill but just resign yourself to do it on a regular basis, maybe three or four times a week. You see, I know you can do it, now it is you that has to make this discussion to be able to help yourself because after all is said and done it is your decision. Guess where I will be going later on this morning? There is a exercise building in my community and I will be spending about a half hour there on the tread mill. Do I become exhausted? Of course I do but the more that I do it the better off I am, and the better I feel sometimes actually exhilarated. Today being Friday is one of the days I get my dialysis but it still won't stop me from helping myself., And by the way, since my Hemoglobin is usually low in the 10 range I am Anemic so I get Epogen (Procrit) to try and keep it as high as possible but I am still going to do some exercise. Richard since your doctor is suggesting that you exercise just try it. No one says that you must do it until you drop but just start off very slowly and you will see that it will get better every time. At first your probably going to get some charlie horses because your mussels aren't used to it but they will go away. Remember Richard, you are the only one that can best take care of yourself. I know you can, now you must do that for yourself. Richard, it has been more then twenty three years since I had my bone marrow transplant. In all of this time I have devoted myself to try and help others with CML. There is one young man by the name of Adam that I did help and he wrote something about me, especially when I had to live is a small plastic bubble in a hospital. It mainly concerns about what I used to do about doing some exercise while I had to live in that plastic bubble and I would like you to read it... 18;s Marty I have many Marty stories I would love to share with you, but I would like to tell you one in particular which has been passed along, becoming a tool for someone elses recovery and health. Its a real Marty story; full of examples. It is about how, despite his profound exhaustion (an exhaustion not easily imaginable to those who havent been zapped with high doses of chemotherapy and radiation we were) he would force himself out of bed in order to march in place to some music for fifteen minutes of exhaustion each day B a heroic act, I can tell you. In order to get himself through this agony, he found it necessary to rivet his eyes on a nylon plastic screw, which fastened his bubble room to the ceiling. Looking at this particular screw B it was it was a 7/16 inch number 6 machine screw with a pan head he was able to enter a trancelike state, to ignore his torment long enough to get through this grueling regimen without collapsing. Now, one day he finished his march, all sweaty and bone weary and winded, his head swimming from the exercise, he happened to glance outside the bubble, and there on the other side, he saw a bunch of his nurses marching in time with the music! They were marching to Martys music! Aerobics with Marty! Marty loves to tell this story, and I must have showed that I loved to hear him tell it, because shortly before I was to enter the hospital I received ... in the mail... two 7/16 inch number 6 nylon plastic machine screws with pan heads (along with a poem of faith,) and instructions to tape one of these screws to the ceiling of my transplant room, and to use it to get inspiration and encouragement, to get strong and recover in a hurry. The other screw? Ah, the other screw was for passing on later to someone else that needed it. Do you see how skillfully, how carefully, how quietly and gently Marty constructs the web that binds us all? And so, as of this date, I am happy to report that now my friend Marty Diskin, having used that second screw to help get him through his identical matching 7/16 inch number 6 nylon plastic machine screw with pan head (together with the story of course,) to yet another bone marrow patient. In this way the joyous chain of our affirmation of life echoes, from one Marty to another Marty, and beyond. Is it chance that their names are the same, or that the other Marty happens to be an identical twin like myself, and received, like me, his own twins marrow (a blessedly fortunate but rare occurrence)?? What goes around comes around. Or,
Re: [CMLHope] Re: Hi
Hi Millie, You want to know something? No matter what you are and have been going through your still here and kicking. You Millie are just like that pink ever-ready bunny. You just keep going and going. You ended your last statement with *That's what we all do, so nothing new..!* * * *Well Millie, you your correct, that's what we all do, but there is something new. Another day!* * * *18's* * * *Marty* On Thu, Jul 18, 2013 at 11:11 PM, Richard H richard1huff...@comcast.netwrote: Sorry to hear about your new health challenge. I am adding you to my special list for prayers. I wll be praying for this to be a bump in the road and not a mountain to climb. Richard H. On Tuesday, July 16, 2013 9:59:14 AM UTC-5, millie wrote: *Hello to everyone. I didn't get on here yesterday as I was sick to my stomach (from what I don't know), and still have it a little today, but not as bad. I did see my Oncologist and he was able to get the results of my biopsy. Well, it is cirrhosis of the liver and so we have to deal with it. Since I've been on Tasigna for 6 years he is confused as this would normally happen during the first year on the drug, so we have to find out how to deal with it. He's going to call the people that make the drug and see what they can find out. Meanwhile, I'm off of the Tasigna until further notice. He did blood work, so he'll call me with the results when he gets them. He is also going to put me on the list for a liver transplant. I didn't think they would consider that at my age, and with my other health issues, but he says that they will. He works for Geisinger Hospital, which is huge in this area and they do lots of advanced things, so we shall see. I went to their new cancer clinic in Pottsville, and it was nice and brand new, so it was a pleasant experience. * ** *Your prayers, etc. will be appreciated. I just have to deal with what is. That's what we all do, so nothing new..! * ** *Talk to you soon.* *Many hugs,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Hi
Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: *I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else.* Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you of any disease but you will feel better when your doing something that you enjoy. Isn't that what life is all about? Busy hands make happy minds. 18's, Marty On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Susan,* ** *I'm glad that you are going to get some help with your issues. I know that once you deal with them, it will make your life so much easier. I know that I feel that dealing with my liver problem is so much better then not knowing and worrying all of the time. We all face a lot of things with this CML. It's different, but the same because we all have to deal with what is. If we had a choice, it wouldn't be to have these problems, but here we areand you are right, connecting with others going through similar things helps us all. Right now, I'm worried about being on a forced vacation from my Tasigna, but have no choice until my Doctor can come up with something. I know that he will. I have such faith in this man and he has always come through for me. My other health issues are getting worse, but am trying to deal with them too. Marty always inspires me as I know that he's going through so much and still has such a positive attitude. I try, and usually succeed in doing that. When I get down, I try to think about all of my CML friends who are dealing with so many things..and know that each day I have is precious and that's always been something I try to remember. I try to take each day as it comes and be the happiest I can be and do things that make me happy. Today has been a rough one.Mostly pain in the left side of the middle section of my back radiating around to the side. I just couldn't get rid of the pain, and ended up back in bed with pain meds and put heat on it. Usually, laying down will ease it some. They (the doctors) don't seem to know what's causing it. My Oncologist seems to think it's my gall, but the others don't agree. I think he could be correct. To bad he isn't the one to make that decision. Today the pain came clear around to the front and I had to deal with it. I finally gave up and took a shower, came down, ate a little and took my pain meds again. I'm feeling better now, and will just go on and do something I like to do* ** *I finished one pillow case last night, but need to see if I have any white crochet thread to make an edging on it. I have a quilt done in blues, white, and yellowthat I only use for good. I am making these pillow cases to go with that, and have shams to finish up for it too. I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else.* ** *You take care, my friend. I know that you're dealing with so much, so keep us informed. Our love, prayers, and hugs are coming your way. Millie * -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to
Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
Hi Susan, I'm wondering if you have already seen your doctor, and if you did, then how did everything go? Anyway, I once saw a movie, The Shawshank Redemption, and there was something said by a prisoner who was falsely convicted of a murder he did not commit. He was given a life sentence. What he said was, Either get busy living or get busy dying I see by all that your doing you chose to accept his first statement, get busy living. You know that life is not a bowl of cherries but since it isn't, the thing that I choose to do is to eat a bowl of cherries whenever they are in season. Get my drift? 18's Marty On Sun, Jul 21, 2013 at 1:08 PM, Susan Zimmerman rszim0...@aol.com wrote: Hi Jeanie, Dr. Pinilla recommended Jessica Altman. Since that was the second recommendation for her and she is at Northwestern, I'm going with her. Sure hope she's taking new patients, will find out Monday morning. Pat Elliott has sent me a video of her with a patient. Did you all know what a great great resource Pat is? I am amazed at her dedication to our cause and the organization she works for. Thanks so much Pat for all your help. Hope everyone is having a great and wonderful Sunday! Let's celebrate our lives together! 18's, Susan -Original Message- From: ICANDOALLTTC icandoall...@aol.com To: cmlhope cmlhope@googlegroups.com Sent: Sun, Jul 21, 2013 9:47 am Subject: Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend? Hi Susan, Great uplifting story. A question? Who did Dr Pinilla recommend to you? Hang in there. Blessing, Jeanie3 In a message dated 7/20/2013 8:34:08 P.M. Eastern Daylight Time, esd...@rogers.com writes: AWESOME Susan! That was very interesting. Keep on celebrating! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie *From:* Susan Zimmerman rszim0...@aol.com *To:* cmlhope@googlegroups.com *Sent:* Saturday, July 20, 2013 6:14:10 PM *Subject:* Re: [CMLHope] Re: Hi Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a social service agency within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Marty Gartenberg wa2...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do
Re: [CMLHope] Hi
Thank you and the very same to you Jeanie. 18's Marty Good luck Marty with everything. Blessings, Jeanie3 On Sat, Jul 27, 2013 at 4:10 PM, icandoall...@aol.com wrote: ** Good luck Marty with everything. Blessings, Jeanie3 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Just wondering if anyone has gone through unrelated bmt for cml...
Hi Terry, Nice to see you here on this forum. I was wondering what happened to you. Sorry to hear about your kidney problems. I also have kidney failure and am on dialysis. All of this started over 23 years ago from all of the chemo and radiation I had for my bone marrow transplant and as time went by my kidneys got worse and worse. You may want to look into a kidney transplant in spite of you dealing with your CML. I think that you would probably be a candidate even though you have CML. I know that if you had any strokes or a heart attack then you would probably not be able to get a kidney transplant. No matter what, you need to get on some kidney transplant lists. If you have a live donor that is willing to donate to you then you need to have them tested as soon as possible. Just so you know there are some hospitals that have a program that if they do not match you they can still donate and in turn you will get someone else's kidney. So far I am on four lists but I also have a possible live donor. I am in Pennsylvania for the summer and once I get back to Florida I will pursue this. If I can ever help you just let me know Hang in there Terry. 18's (Symbol for life) Marty On Tue, Jul 30, 2013 at 9:28 AM, ted...@aol.com wrote: ** TheresaI haven't gone through it, but I think you have a strong case. Press on! Tom in KY In a message dated 7/30/2013 9:25:03 A.M. Eastern Daylight Time, terrijef...@aol.com writes: Hello, I was diagnosed in May of 2000. Started on interferon and arac. Moved on to experimental drugs, Gleevec, Sprycel, Tasigna. in and out of remission until 2011. Everything quit working and I had to go with transplant at Johns Hopkins. They were terrific. I was put on disability. So now I am two years out and just became eligible for Medicare on June 1. I called to get drug coverage and they calculated the cost. Two days later I received a cessation of benefits, stating cml is in remission. I should be able to get a sedentary stress free job. In the meantime starting Feb, I developed headaches and high blood pressure. Creatinine went up. I was referred to a nephrologist with a gfr of 40%. I had a kidney biopsy showing glomulersclerosis. 65% of my kidneys are dead and dried up, this damage as I understand is irreversible. Since then I have dropped twice to 11% gfr and currently am at 21% which puts me at stage 4 chronic kidney disease. Severe function loss. Has anyone else dealt with this? I'm looking at poss transplant which they don't even know if I qualify as I am only 2 yrs remission from cml. I still take 800 mg tasigna daily to prevent it from coming back. So my other option is to prepare for dialysis. I am only 45 yrs old. Had to hire a lawyer to help with ssd, no guarantees he says. Just a lot to deal with all of a sudden. Would love to speak with someone who has gone through this or knows of anyone. Thanks, Theresa Migut Johnstown, Pa -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to
Re: [CMLHope] Doctors Visit
Dear Millie, you have been through so much, but you are a very strong person. I wish you the very best of luck 18's Marty On Wed, Jul 31, 2013 at 12:46 AM, C.M. Houtz ho...@ptd.net wrote: ** *Hi all, I did tell you I'd let you know how my Doctors visit went today. Well, we did straighten a lot out, about meds. etc. but nothing about the liver. She has talked to the other doctors and no one seems to know where they're going with this one. They think it's all being caused by the meds and I'm on so many that could have caused it. She said it probably started on Gleevec as they had me on twice the amount of what others were taking, and then it stopped working after being on it for years and he put me on the Tasigna. That's been great and got me into remission, but it also probably cost me...causing the liver problems. Well, I take so many drugs that could have caused it...or the combination of them all and we probably will never know. She did tell me that she had talked to the other doctors and Dr. Gandhi (my Oncologist) is talking with the people who make the drug and see if their doctors can come up with something. I'm still off of the Tasigna, so..when they make up their minds, I will let you know where we're going from here. She also addressed my pain and wants me to go back to pain management and see if injections might help the pain. They also won't go through the liver, so it's a good choice for that problem (if it works) I'm trying to stay positive and work with them on whatever I can. Just wanted you all to know where I'm at and will let you know when they make a decision about what to do with me* ** *Hope everyone is fine tonight. I'm heading to bed as I really need a good nights sleep.* ** *You're always in my thoughts and prayers,* *Hugs to all,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: 10 years post-transplant today.
i AM USING IT FROM A MEDICAL PROSPECTIVE. MOST INSURANCE COMPANIES WILL DISQUALIFY A PERSON THAT HAS OR HAD CANCER FROM ANY LIFE INSURANCE POLICY'S MOST INSURANCE COMPANIES ALSO SUCK... 18'S MARTY On Thu, Aug 1, 2013 at 10:37 AM, kevin.l.willi...@gmail.com kevin.l.willi...@gmail.com wrote: Hi Glenn, That's great! It's important to hear about the long term survivors! Marty, Are you using the 5 year mark from a medical perspective or an insurance perspective? I ask because I have been PCRU since 8/2007 but have continued to struggle when applying for life insurance. On Wednesday, July 31, 2013 11:03:53 AM UTC-7, glenn...@sbcglobal.netwrote: Ten years ago I had a Bone Marrow transplant at UCSF medical center. I have been in complete remission from CML since then. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Back on Gleevec
Hi Peter, Don'r become discouraged. We all have different bodies and what may work for one may not work for another. Everyone acts differently from different drugs. Who knows why but the fact is you you are still alive and basically doing well. I just wish any of these TKI's would have been around when I had CML. This was way back in 1989 and I had nothing available to me but a bone marrow transplant. Peter, you know that old saying I was sad because I had no shoes until I met a man with no feet Anyway, it is in my heart that there will be something that will come up to cure or prevent CML in the near future. It will be like the Salk Vaccine that prevents Polio. 18's (Symbol for life) Marty On Fri, Aug 2, 2013 at 7:50 AM, Peter pksch...@gmail.com wrote: Those vacations can backfire. A few months ago, I was in really bad shape, undoubtedly caused by Tasigna. I did not take Tasigna for ten days and then resumed the regular dose. The next blood test, about two months later, showed that my log reduction had decreased from 3.4 to 2.5. Ouch!!! The two tests three and six months after that, showed a 3.0 log reduction, which is where I am now. Needless to say, I have been taking my meds religiously ever since. There must be some secret which has not been unlocked yet. Why can some people get away with not taking any TKIs for years, while others are instantly punished after skipping a few doses? On Thursday, August 1, 2013 9:04:09 PM UTC-4, Sylvia wrote: Hi everyone I wrote about 2 months ago that after 12 yrs on Gleevec I was going to take a break and go off for a while. My dr wasn't too pleased and said i needed to come back in a month for a PCR. Well my results went from a 4.5 log reduction to a 2.8 log reduction. That's a lot in 1 month. So I am back on Gleevec. It's like welcoming back an old friend. I am thankful for Gleevec as many of my CML friends didn't live long enough to try it. Blessings to all Sylvia Guenther Dx 6/98 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Back on Gleevec
Millie, I know that i'm right, they will come up with something. i'm sorry that you have to deal with all of that pain. You must be such a strong person and I admire you for that. Many more 18's dear Millie, Marty On Fri, Aug 2, 2013 at 3:56 PM, C.M. Houtz ho...@ptd.net wrote: ** *Hi Beth, Sorry that you're having a bad day. Hope that the walk will help. I sure wish I could get out and walk, so feel lucky that you can do that. I was just working on supper. I am having burgers, corn, cut off the cob and sautéed in butter, and a tomato and cucumber salad that I love. It's what it is, and I love to get it done early. Actually, I got on here because JoAnn Fabrics was having a sale on some thread that I use and shipping was next to nothing, so I'm happy that I got such a good deal. That always makes me smile* ** *We all have tough days. I'm sure that I'll have many in the future, and hope that you all will be there for me. I'm there for anyone that needs to vent, or just talk. We have issues with taking these meds, yet they are our salvation too. It's a rough call sometimes. I'm in pain today, so am taking my meds for that and hoping to control it...which I am so far. It isn't a CML thing, but my Polymyalgia and some days are worse then others. Lately, it seems like it's more of the worse. It will go away for days, but always manages to come back. I also had a call from the place where I send for my prescriptions and they can't get my one medication and don't know when they'll be able to, so want the doctor to prescribe something else and that means possibly having a different reaction to a new medication. I've decided to put off calling my Cardiologist until Monday as I just don't feel like dealing with it today. I guess that sounds stupid, but it is what it is. It's one of my heart medications and I have over a months supply left, so no big deal.* ** *You take care, my friend, and let me know if there's anything I can do to help you. I wish I could come up with the answers that we're all searching for and, Marty is right, Someday they'll find the answer to this awful CML and other cancers and people won't have to deal with it any more. I'm sure that something else will crop up to take it's place though. We are lucky to be living in a time when they look for solutions. * ** *Many hugs (I believe they help) and lots of 18's too.* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Back on Gleevec
Dear everyone, I want you to read this. We may all have our faults but we are all here for a reason. I always say that there is a reason for everything but you must first open your eyes to be able to see these reasons. The Water Bearer http://love2ascend.com/2013/01/16/the-water-bearer/ [image: 00081]A water bearer in China had two large pots, each hung on the ends of a pole which he carried across his neck. One of the pots had a crack in it, while the other pot was perfect and always delivered a full portion of water. At the end of the long walk from the stream to the House, the cracked pot arrived only half full. For a full two years this went on daily, with the bearer delivering only one and a half pots full of water to his house. Of course, the perfect pot was proud of its accomplishments, perfect for which it was made. But the poor cracked pot was ashamed of it’s own imperfection. And miserable that it was able to accomplish only half of what it had been made to do. After two years of what it perceived to be a bitter failure, it spoke to the water bearer one day by the stream. “I am ashamed of myself, and I want to apologize to you. I have been able to deliver only half my load because this crack in my side causes water to leak out all the way back to your house. Because of my flaws, you have to do all of this work, and you don’t get full value from your efforts,” the pot said. The bearer said to the pot, “Did you notice that there were flowers only on your side of the path, but not on the other pot’s side? That’s because I have always known about your flaw. So I planted flower seeds on your side of the path, and every day while we walk back, you've watered them. For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house? *Moral:* Each of us has our own unique flaws. We’re all cracked pots. But it’s the cracks and flaws we each have that make our lives together so very interesting and rewarding. You've just got to take each person for what they are, and look for the good in them. Blessed are the flexible, for they shall not be bent out of shape. Remember to appreciate all the different people in your life. 18's Marty On Sat, Aug 3, 2013 at 1:35 AM, C.M. Houtz ho...@ptd.net wrote: ** *Hi BethYou sound a lot like me. I do find strength in sharing with others and if I can help someone, that's the best medicine in the world for me. I've always been that way. My kids always think I do to much for others, but I do it for me as it has always helped me through life. Oh...I do it for them too, but, hopefully, it helps everyone. I just love people and feel their pain too. This group has become so important to me and I think that we're a great group that help one another through some very rough times. I'm sure that you miss you Mother a lot. 32 years after loosing my one and only daughter, I still feel the pain and miss her so much. She was my best friend and we shared so many thingslikes and dislikes. She was only 20 and had so much to live for. * ** * Tomorrow will be a better day for you. That's the way I look at life. I take one day at a time and most of the time that works out for me. To bad we don't all live closer so we could get together. I imagine that we could talk for hours and have a great time. Thanks for always being there for me. I do appreciate it and hope that we can continue to help one another when needed. The days I don't get any e-mails from the group, I really miss them. They always lift my spirits and give me the strength to just do the best I can. By the way, supper was great. My son made the burgers on our indoor grill and the rest was simple, but good. We always sit down together for our meals and that's a good thing. Families today don't do that often enough. * ** *Let me know how you're doing and know that I'm always here to listen.* *Many hugs, blessings, and 18's,* *Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group,
Re: [CMLHope] Re: Just wondering if anyone has gone through unrelated bmt for...
Hi Terri, Your doctor doesn't know what she is talking about dialysis and disability. If and when you have to be on dialysis then as far as social security disability goes, you are in fact considered disabled. Go to Google and type in, are people on dialysis considered disabled. How do I know about this? Well, I am on dialysis three times a week for more then four hours each time and I am considered disabled and on Medicare. You might want to let your doctor know that if or when you have to be on dialysis it takes up a lot of your time and sometimes after a treatment you don't feel well enough to work. I have a few suggestions for you. First, find out if any of the medications that your currently taking have anything to do with your kidney failure. If so then perhaps you can switch to something else. Lower your protein intake and see if your kidneys are spilling less proteins. Start drinking more fluids. If you are not diabetic then start drinking Cranberry juice is is very helpful to your kidneys and flushes a lot of the toxins out of them. Something else you should know. As your kidneys fail they limit the production of a hormone that goes to your bone marrow to help produce hemoglobin and as such you start becoming anemic. Once this happens you feel weak and tired because oxygen is not going to feed your mussels as well as it should. If or when this happens your doctor should be giving you either Procrit or Epogen injections. I am currently on Epogen and it does help me considerably . Whenever you get a blood test make sure that your levels of Creatinine and your BUN levels are included in your tests. You may also want to ask your doctor to do a 24 hour clearance test for your urine to actually see how well your kidney/s are clearing out the waste products. Even though your Cratinine and or BUN levels may be a bit high it is that clearance that really matters. I am looking for a kidney transplant and am registered at four different hospitals in Florida. Hopefully once I get back there after the summer I may be able to get that transplant. This would be my second transplant. I had a bone marrow transplant for CML more then twenty three years ago, and now hopefully a kidney transplant will come next. It seems that there are enough body parts in me (after the kidney transplant) to make a double of me. As it is now, I am what is called a Chimera, meaning that the blood type that I was born with, O+ has turned into B+ which was my bone marrow donors blood type. Since bone marrow doesn't have to be the same blood type but solid organ transplants do need to be of the same blood type, being a Chimera my body can accept a B+ kidney or since I once was O+ and that being the universal donor, my body can also accept a O+ kidney, but that would have to be from a live donor. Terry, if there is anything that I can help you with then all you need to do is to ask me. If you would like to speak with me on the phone then just email me personally at wa2...@juno.com and I will send you my telephone number or if you want, just send me yours. Terry just one final thing... If you feel down and depressed about all of this then my suggestion to you is don't. Just look at me. I have gone through all of this and I am still here dealing with all of this, but I don't let any of this get me down and I try to live my life as best as I can, and I am enjoying my life to the fullest, and so should you. 18's and the very best of luck. On Sun, Aug 4, 2013 at 9:25 AM, terrijef...@aol.com wrote: ** Well, in addition to all of this. My oncologist saw a significant amt of protein in my urine test from nephrologist. She ordered a 24 hr urine test which showed microclonal protein. Which warranted a bone marrow biopsy on Friday. They are now looking at possible multiple myeloma. In the meantime saw my nephrologist whom said ultrasound showed left kidney at 7.5 cm to which she says it is no longer working at all. I'm living off of 21% of my right kidney. She wants a transplant consult but needs to wait for biopsy results as if I show positive for multiple myeloma then I can't do transplant. I discussed disabiltiy continuation with her and she says people on dialysis are not disabled. So she can not state that. Only submit current medical records and state we are managing chronic kidney disease. I'm not looking for a new disability just for the ckd. I am only looking to continue with all my combined issues and limitations. Ugh!! This seems so stressful and so unfair. How in the heck am I to prove myself to a possible employer when I have appts weekly and tests. Not to mention fatigue and sleep issues. I just don't get this whole system. Thanks for allowing me to vent and please pray for good results from my bmb which I should get this Wednesday!! Terri In a message dated 7/31/2013 3:34:24 P.M. Eastern Daylight Time, icandoall...@aol.com writes: Hi I am told that remission only means temporary
Re: [CMLHope] Re: Just wondering if anyone has gone through unrelated bmt for...
Hi Again Terri, I know that you have already taken that 24 hour clearance test, but you should have it repeated in a month or so just to see if there are any changes in your clearance, even if only a small amount. That way your kidney performance can be judged to see if they are either getting better or worse. It can also give you a timeline of what is to come. Hopefully it will be a positive timeline but you should know either way. I wish and pray that your clearance only gets better. I have you already on my prayer list. 18's Marty On Sun, Aug 4, 2013 at 12:38 PM, C.M. Houtz ho...@ptd.net wrote: ** *TerriWe're all here for you and will keep you in our thoughts and prayers. When you are having a tough day, write and vent. I do, and I always get such beautiful, encouraging, messages from our warriors. It does help a lot. I'm usually a very strong person, but recently had an anxiety attack and that's not me at all, but things happen and my doctor said that she was surprised I hadn't had one before as things have been building up and I had to release it in somewaySince then, I'm doing okay, and try to vent when needed. Remember, we're all hear to listen and help in any way we canMany hugs (I believe they help a lot) Millie* -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] For Terri
Terri, Just to let you know. Almost any time that someone applies for Medicare benefits they are usually denied. Even when they try to apply again they are denied once again. I remember when I had to live in a plastic bubble in the hospital for many months my social worker applied for for social security disability and I was denied. She applied twice more and I was finally accepted although I had to wait two years in order to start receiving any benefits. Once I was accepted I was paid retroactively to when I first applied. My social worker at the time really helped me so much that I asked her if I could help her start a foundation, and I did. It is now The bone marrow foundation in New York City. I still remain very friendly with her. www.bonemarrow.org Why not check it out and see if you can get some help Almost everyone that I know who has tried getting onto Medicare had these same problems. Your right, never stop fighting because in the end you will win because as upsetting as it is, you are your own best advocate. By the way, let me congratulate you on not having multiple myeloma, something else that you don't need As usual I send along 18's to you Marty On Thu, Aug 8, 2013 at 4:38 PM, terrijef...@aol.com wrote: ** Thanks! I got my bone marrow results back and they are clear, no multiple myeloma. So now time to focus on the kidneys, nephrologist wants me to go for transplant consult. Doesn't know if I am even a candidate as it has only been 2 and a half yrs since bone marrow transplant. I have been on the phone all day with social security and medicare. My medicare started in June. I appealed within ten days the cessation and got a lawyer. Today I call to see what happens at end of August after I was allowed a two month extension since I appealed. They are telling me I no longer even have medicare right now. Nobody could tell me anything as to when it stopped or any info. Just advised me to go to welfare. I am very frustrated!!! Ugh! Terri (not gonna stop fighting!) In a message dated 8/6/2013 7:24:57 P.M. Eastern Daylight Time, wa2...@gmail.com writes: Hi Terri, Peg is correct, your Nephrologist is an ass. She is also right about not starting another claim because if you do then there is a two year waiting period in order to be able to get your benefits. As I previously mentioned, I am on dialysis for the past two years and that qualifies me as disabled, so if and when you have to go on it then you should also be qualified for disability and Medicare. I wish you the very best of luck and health. Now Peg, I wish you and your husband the best. May you both be blessed by GOD for health and happiness. Same goes for Terri and everyone reading this. 18's (Symbol for life) Marty On Tue, Aug 6, 2013 at 3:16 PM, peg peg@live.com wrote: Terri, Your Nephrologist is an ass...and is not the final word on whether you are disabled or not, there are plenty of folks on disability because they are on dialysis. However, remember that you don't want to file a NEW claim but rather, reopen the old one. If you were to file it on the basis of dialysis it would start an entirely new claim with a new wait period for your Medicare. You want to show that your health has deteriorated as a result of the ORIGINAL claim, so all of that time applies to the wait and you could have Medicare immediately. ANY doctor that cares about you and recognizes that you are unable to work can file your disability. If you don't have one on your team that will do that for you, perhaps a disability lawyer can recommend one. Sorry about the tough road ahead...I relate...I have just been diagnosed with my third primary cancer since being diagnosed with CML three years ago, have had MS for 24 years and care for my husband who has brain damage. The best advice I can give you besides find a caring doc and a new lawyer is to take each day, one bite at a time. Message me any time I can be of help. I care. peg -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com
Re: [CMLHope] For Terri
Hi Again Terri, Remember what I said, you are your own best advocate, and sometimes you have to do things that can help you along. If you asked for a continuation then it should be on the records. Did you get any paperwork or do you remember who you spoke with about that continuance?? Take a suggestion and don't do any of this on the phone. First call and set up an appointment, but only with a supervisor. Once you have that appointment you show up wearing a surgical mask and gloves and try to sit away from the others that are there. Since you have CML you are immuno compromised and once they see you there you will have their attention. This is exactly what I did once I got out of that plastic bubble. If you can't get any satisfaction at your local social security office then simply travel to another office and try there. You will win but only if you take things into your own hands. Do not get discouraged, I didn't! 18's Marty On Thu, Aug 8, 2013 at 4:44 PM, terrijef...@aol.com wrote: ** Thanks Peg! I have a lawyer and that is the thing, this is to be a continuation so not to start a new claim. I've been on phone all day and actually on hold right now. They are telling me my Medicare is no longer in effect. Even though I appealed cessation within ten days. which was to allow me two more months of coverage. So crazy! I have to plan to have some kind of coverage while this appeal is going on. Our local office is about worthless. They have no information and no answers. Terri In a message dated 8/6/2013 3:16:57 P.M. Eastern Daylight Time, peg@live.com writes: Terri, Your Nephrologist is an ass...and is not the final word on whether you are disabled or not, there are plenty of folks on disability because they are on dialysis. However, remember that you don't want to file a NEW claim but rather, reopen the old one. If you were to file it on the basis of dialysis it would start an entirely new claim with a new wait period for your Medicare. You want to show that your health has deteriorated as a result of the ORIGINAL claim, so all of that time applies to the wait and you could have Medicare immediately. ANY doctor that cares about you and recognizes that you are unable to work can file your disability. If you don't have one on your team that will do that for you, perhaps a disability lawyer can recommend one. Sorry about the tough road ahead...I relate...I have just been diagnosed with my third primary cancer since being diagnosed with CML three years ago, have had MS for 24 years and care for my husband who has brain damage. The best advice I can give you besides find a caring doc and a new lawyer is to take each day, one bite at a time. Message me any time I can be of help. I care. peg -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
