Hi Susan, I will be in Chicago the first week in June. I'll give you a call and take care. greenie In a message dated 1/25/2015 12:22:28 A.M. Eastern Standard Time, cmlhope@googlegroups.com writes:
Hey Greenie and all, So sorry to hear you're having these struggles. Nausea is like having the flu all the time. The doc (our mutual Altman) prescribed a nausea pill when I began bosulif. I've used it about 4 times since going on bosulif. (10 mos. ago). If it continues after you've gone off gleevec for a week or more, I would ask for some. You have lots of options, but I truly hope a quick vacation will do the trick. We might not get to meet in New Carlisle if you can't get this problem solved~! And I had such a good time meeting with you and your sweet wife, we'll need to do it again when you are in the area. I went to Chicago Northwestern Medical again last Thursday. I now get 3 months in between visits since I'm in remission. I do have to go to a cardiologist to check out a few chest pains I've had, and a neurologist for the shakes that have been going on for far too long. I'd like to blame everything on bosulif, but I don't think I can. You are sure in my thoughts and prayers about your nausea. Enjoy your vacation from gleevec and sure hope it helps! All you guys have been posting so much. I read, but I can't always write with other things going on. This time I'm reporting a praise report about being in remission, and asking for prayers about the chest pains and shakes!!! Rearranging my blood pressure medicine and one other to see if it improves things before the neurologist. It was too strong I think....we'll see. God bless you all!!! 18's, Susan -----Original Message----- From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Sat, Jan 24, 2015 3:25 pm Subject: [CMLHope] Greenie Hi Greenie Check your potassium and ect. You might have an imbalance. That happened to me when gleevec quit working. I was so sick. Do you have diarrhea? I had both. I finally started taking psyllium seed--crushed--you can get them at health food store. Just go by the directions. It cured the diarrhea but I had to finally change tkis. Blessings Jeanie 18's On Jan 24, 2015, at 11:39 AM, "'Icandoallttc' via CMLHope" <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Hi Richard and hang in there. I wake up with nausea every morning which I think is the hydrea. Do you eat a big meal with gleevec? I know I had to and no spicy foods. Your success on gleevec has been great. It quit on me after 5 years. You could just have a bug. Good luck and blessings. Jeanie Sent from my iPhone On Jan 24, 2015, at 10:56 AM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Hi to my friends in our group, well I've been on Gleevec for 15 years and 14 days all of a sudden for the last 4 days I'm having nausea problems. I'm taking some promethazine that helps some what but it's not a fun thing. I have no idea what started it either. I had this problem before when we lived in Springfield, MO. I got over heated and got hit with nausea every day for a little more then 2 years then I awoke one morning and it was like someone turned off the switch and it was gone. This time of the year it's not hot here so I know that's not what caused this problem. I'm going to take a Gleevec break for a week or two to clean out my system and hope that I get back to normal. I did this before about 6 years ago when I had a sinus infection and the doctor back in Indiana put me on and anabolic that interfered with my Gleevec so we stopped Gleevec for 26 days. After getting blood work some cancer cells did show back up in my blood work but after stating Gleevec again the next test showed that I was clean again. My doctor at that time was doctor Tallman and he gave me a call and said "well if it worked before it will work again" and that was that. So I have my fingers crossed to see what happens. I can't stand this nausea problem, my heart goes out to the women that have babies and have to put up with nausea. I just hope it's the Gleevec again and not something else. My blood counts are O. K. so I'm not worried about that. This does not help my anxiety problems Will keep you all up to date as how things go. greenie In a message dated 1/23/2015 11:35:02 P.M. Eastern Standard Time, _rbhuffman1@gmail.com_ (mailto:rbhuffm...@gmail.com) writes: Seventeen and on my first adventure this wonderful world we live in. Richard H. On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote: That's cute Richard--how old were you? My IV went in good-no swelling. This morning I am sick-- sore throat and mucus. Glad everything went good Sherri but couldn't they give you something for pain?? Blessings Jeanie Sent from my iPhone On Jan 23, 2015, at 12:03 AM, Richard H <rbhuf...@gmail.com> wrote: May I add my sea story of needles, I don't like needles but do not have a phobia. When I arrived at boot camp the first thing was get our shots. We walked through a line getting shots in both arms as mentioned. They were using hugh syringes and had large pillows with the needles that was changed while we were stepping in front of them. Someone was calling a slow cadence of step, step. As each recruit stepped He was given a shot in each arm. All of a sudden the corpsman I was getting ready to step in front of yelled "BRING BACK MY NEEDLE." The recruit in fount of me had it hanging in his arm. When I received the 4 pricks for allergy testing I then had to sit in the dentist chair I promptly passed out. Richard H. On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: Jeanie, Needles lord knows I hate them. The first time I had a blood test it was to get married. My Doctor lived 3 blocks away form me and I worked for him when I was in High School. They did the blood work and he walked in after and took one look at me and he put is hand behind my head and pushed it down and told me to pushed as hard as I could to keep me from passing out. Then when I went into the Navy I was on active duty for a year and a haft they found out that I didn't get any of my shots. Well you know what happened then, I received them all at once, both arms. So years go by and I end up with CML and we all know about needles. Yes, some are good and some are bad. I had to get blood work this Monday and I think the lady took the needle outside and scraped it on the pavement plus I think it was square and bent. I think it when through my arm and out the other side. And the first BMB all they gave me it was so much fun that I asked them to do another one. Ha, Ha. After about 10 or 11 of them I asked to be put into lala land which they did but I had to have someone drive me home. My wife has to give me a shot of testosterone every two weeks, the needle is 1/1/2 in long another fun shot. So for me they do the molecular blood work and no more BMB. Thank you. Take care and hang in their, greenie In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, cml...@googlegroups.com writes: Hi Marty. How are you? I am going to have the endoscopy today. First I will go to the blood area and have blood checked. Then to dr for consultation. Then to have the endoscopy. Long day. Needles are no fun but we get used to them. Some draws are good some bad. Pray for me and all in need. Love Jeanie Sent from my iPhone On Jan 21, 2015, at 7:52 AM, Marty Gartenberg <wa2...@gmail.com> wrote: Hi Jeanie, You have been through so much it's about time that you got a break or two. Not feeling that IV go in and no black and blue afterward then having a BMA with little or no pain. Well, two out of two ain't too bad is it? <360.gif> When I was a kid I had a phobia, and it was needles. I hated them that on the day my school was giving shots I told my mother that I was sick and couldn't go to school that day. So, she kept me home and I went to school the next day. Guess what? I got the shots that day. OK I'm in the army and in those days you had to walk down an isle to get all of your shots. They used a machine that looked like a gun and I thought it wouldn't hurt. Guess what? It did! Then when I was 45 years old I got CML and went for a bone marrow transplant. So many, many needles that I just got used to them. Then having 17 BMB's. It looks like needles and me are just like twins, always together. Not to mention that one of the aspiration needles break off and lodge in my illiac. So in go more needles and an in-cession follows to remove that needle. Then four stitches, of course using another needle. So about 4 years ago my kidneys fail and I go on dialysis. Two very large needles are stuck into my arm every Monday, Wednesday and Friday, and they stay in there for four hours. I wouldn't say that I have gotten used to them but maybe I just don't pay that much attention to them anymore. So much for any phobias., but life goes on. Hopefully I will be getting some more needles for a kidney transplant soon. Now doesn't that sound warped from someone that had a phobia against needles? It just all depends on how one looks at it I guess... 18's, Marty On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope <cml...@googlegroups.com> wrote: Hi Marty and thanks so much for that uplift. I have been dreading it for some reason. I pray that you get your kidney soon-- I know those fistula operations are tedious. The procedure I dread most is the IV. My last one last week was a miracle. The nurse put it in and I didn't feel a thing. Later I looked for the black and blue mark left by the IV and no sign at all. I have never had this before. It's usually black and blue and swollen. My Bma has hurt very little. Thank The Lord!!! You are our spice of life and thanks for being there for. And thanks to all if you for your prayers and uplifts. Blessings 18's jeanie<emoji_u1f42c.png><<WBR>emoji_u1f42> Sent from my iPhone On Jan 20, 2015, at 10:06 PM, Marty Gartenberg <wa2...@gmail.com> wrote: Hi Jeanie, Good luck with your endoscopy. They usually do put you out for that procedure. I don't know if they will use a Propofol cocktail but if they do you will go to sleep and when you wake up you will still think that the procedure was not yet done. Very good sleep with no after effects. I have had at least a dozen of them. Every time they operate on the fistula in my arm they use it. It looks like I will be going in for another procedure for my fistula, there is a narrowing in two sections. This will make 13 procedures in the last 12 months. I sure hope that a kidney transplant will be coming soon. I have to share a story about my anesthesia doctor. She knows me so well that we are on a first name basis. So, the last time that I had to be put out I asked her if I could "knock myself out" Of course I was only kidding but she told me that she would let me do it to myself. So, i'm in the operating room and she is standing over me and she puts the oxygen mask on my head and as she is holding the needle that is connected to me IV she tells me to put my thumb on the plunger but not to push it until she tells me so. Ok I got my thumb on the plunger and she tells me to push it very slowly when she counts to three. So, I'm waiting and her thumb is on top of mine and she counts "one" then she starts to count "two" and the next thing I know is that I am waking up in the recovery room. When she came to see me I asked her if I was the one that knocked myself out and she just smiled. By the way this Propofol is white in color and looks like milk. Humor is the spice of life.<360.gif> 18's, Marty On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope <cml...@googlegroups.com> wrote: Hi Marty Yes a fl cracker--hope you are great today!!! I am going to have an endoscopy thur. First one--they put you to sleep. Blessings Jeanie Sent from my iPhone On Jan 19, 2015, at 7:55 PM, Marty Gartenberg <wa2...@gmail.com> wrote: Hi Jeanie, You sound like a real southern gal. As for me, I'm just a good old plain city boy that also loves to go fishing. When I was a kid my father would take me out deep sea fishing and my favorite fish was blue fish. My mother used to cook it in milk to get rid of the fishy taste. It was really good but I can't seem to find blue fish here in Florida. Anyway, I am kind of surprised to hear that your having a difficult time with Hydrea. That was the first drug that I got along with Allopurinal when I first had CML. Both of those drugs never gave me any problems except if I took too much and it would take about a week for them to start working. Once they did then my blood counts would drop sometimes drastically so the doses had to be adjusted, but I never got sick or anything like that from them. Good luck, 18's, Marty On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope <cml...@googlegroups.com> wrote: Hi all, My family all love to fish, and we keep and eat everything legalhehe. I was reared on good fried to a golden brown perch that live in the Fl lakes and rivers. There is nothing better than good fried mullet with their roe fried to t golden brown. We love it with grits and tomato gravy and cornbread. I am feeling some better, but taking Hydrea is no fun at all. Knocks you for a loop. I haven't heard about the pontatinib yet. My doctor says its a powerful drug and has to be kept monitored every week. Well all the drugs are powerful as far as I am concerned. Good luck everyone, Jeanie<3 In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, wa2...@gmail.com writes: Hi again Greenie, Like you said, don't look back but only forward. By the way, I am an animal lover whether it be dogs, cats, birds or fish. I am glad to hear that you threw back those fish where they belong. 18's, Marty On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope <cml...@googlegroups.com> wrote: Marty, My aunt left me some stock and money and one of the stocks was Novartis and my stock guy told me to sell it. That was before Gleevec was in any kind of study. Because of him I also lost $43,000.00 and I pulled my money out and fired him. If I, would have, could of. Of course I wish I would have kept some of my early Corvette's that I had I would be worth a more money then Novartis. But can't look back, just look forward. Thanks for your reply, also I live in South Fort Myers not far from the beach. In fact I went fishing yesterday by the beach and caught 8 fish. But I do not keep any, back into the water they go where they belong. greenie In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Greenie, First, where in Florida do you live? I am on the east coast, Boynton Beach. If we are not to far maybe we can do lunch one of these days. If my memory serves me right I think that you may be in Ft Meyers??? If so then I guess that lunch is out of the question... About STI571. Do you know how it came about? As everyone already knows Dr. Brian Druker who was the one that had first discovered it. He tried finding a drug company that would produce it and finally found Novartis which was at the time an agricultural drug company. One of Dr. Drukers patients was Zavie Miller who was trying out STI571 and it was working. Novartis didn't want to produce it in quantity because of the start up costs. Both Zavie and I got in touch with one of the principals of Novartis and told him that we may be able to bring a lot of investors into the company. At the time there was another CML site and we got on and asked if people would like to invest in the Novartis stock. At that time their stock price was $1,200 a share but there were also what is called American registry shares of Novartis that was selling for only $20.00 a share. Everyone started buying those shares and Novartis then started production but only after it was approved by the FDA which normally takes about 10 years. With pressure being put on the FDA STI571 was approved in about one and a half years, and became Gleevec. I bought many shares of Gleevec at $20.00 a share and have nor will I ever sell them because of my support for Novartis. As of my December stock portfolio Novartis is listed at 92.6600. Novartis stock has continuously gone up and up over the years. I am however disappointed in the price they are getting, most notably there are people with CML that can not afford it. Now Novartis does have some options for those that are having a difficult time but it still would be nice if Novartis would look back at what they were and what they are now, and maybe consider dropping their price for Gleevec. Wishful thinking? Maybe but maybe not, hopefully... But Greenie, as you mentioned it is all about greed and money. 18's, Marty On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope <cm l...@googlegroups.com> wrote: Thank you Marty, Everything you wrote is so true about Gleevec and CML. It's unfortunate that greed and money has to be in the equations in the final outcome. After Interferon that almost killed me all that was left was Hydrea. So when Doctor Tallman called me and wanted be in his study for STI571 I had no idea what was going on. Within 3 months I was 85% clean and after 6 months I was clean. Yes their have been over the years some up's and down's put that's part of life. Like my late Aunt used to always say when she was in her 80's I just take one day at a time. I wound like to see a cure in my life time because the old hour glass is starting to run low on sand.. And the way these people drive here in Florida the end could come anytime I leave the friendly confines and that's not any guarantee because most of the people speed and run the stop signs in this 55 and older community. Keep in touch, Greenie In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, wa2...@gmail.com writes: Hi Greenie, So you have been on Gleevec for 15 years. That is something good to know because what would you have done without Gleevec? This drug is responsible for saving countless lives. Thank GOD it is here or you wouldn't be here right now. If it weren't for dialysis neither would I be here right now. This is the advancement of what medicine has on our lives today. I always say that there will be a cure for CML and you can mark my words it WILL come soon. Just like all of the things that were not around years ago now they are coming. GOD bless you Greenie! 18's, Marty On Thu, Jan 15, 2015 at 5:47 AM, Shannon L <shannon...@gmail.com> wrote: Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3 yrs after dx) Shannon On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote: Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. Starting to retain fluid around my ankles a little but that could be and age thing. 75 years old. greenie In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, cml...@googlegroups.com writes: Hi Richard and thanks for the update. My onc doesn't like for me to be informed either; he just ignores what I say and goes on to tell me what he thinks. My uric acid was high along with my WBC and Platelets. He seemed to be more concerned with the high uric acid--even called me on my cell personally twice; never had that happen before. He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the same thing they did 11 years ago when I was first dx. He took another blood sample to see if I have a mutation against the Sprycel. It seems strange that I had a mutation with Gleevec after 5 years. Is five years a cut off point? Has anyone else have this happen? Anyone else been on Hydrea after tki? Going next week to Moffitt to see if I have the mutation. Will let everyone know. The leukemia has reared it's ugly head once again!! Pray for me and everyone in need. Blessings Jeanie (18) In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, rbhuf...@gmail.com writes: WOW! Just read todays posts. I am praying for the group. I will add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds water weight in 20 days after restarting Gleevec. His nurse called that he was out of the country on vacation with his family. She checked with the DR. covering for him and he asked me to stop Gleevec as he thought I was gaining weight too fast also. My ONC did return to the office on Monday but finally had a conference with his Associate and he agreed with that decision. They both thought that I should be on a different treatment. My ONC was to draft an e-mail to the VA ONC (the one controlling my prescriptions) about my reaction to Gleevec and to recommend the treatment he thinks I should be on. So I am still in a wait and see stage. My ONC tells me I am too informed about my condition and that challenges most blood cancer specialists that rarely see CML. So let the fun and games continue. I am still feeling great, but the "Gleevec Brain" was also starting to show itself, but nine days off has cleared it. I'm as sharp as a busted tack, but that is "normal" for me. As always, "life" and may your tomorrow be beautiful and better than today. ... -- -- [CMLHope] A support group of _http://cmlhope.com_ (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_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto: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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . 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