Dear Jeannie,
Good news is you probably will not get them if you don't have them already..We uptake the drugs and they affect each of us so differently....We are blessed to tolerate it as well as we both do. May you have a blessed holiday.. Happy weekend to all..and to anyone living near buffalo....our hearts go out to you...8 ft of snow...beyond my comprehension!! Beth -----Original Message----- From: icandoallttc via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Nov 21, 2014 10:00 am Subject: Re: [CMLHope] Beth sprycel ? Thanks Beth This helps a lot. I take tramodol for pain and they have put it into controlled drug status. Don't know why. Imitrix works well but makes you feel weird. I am trying to cut down on sprycel. I've been I remission for a while now. Just recently my platelets started rising. That has always been my problem. I've had to have my blood cleansed a few times because if this. Platelets and WBC will just start going way up. Glad you are managing so well. I have no muscle problems as of yet. Blessings and thanks Jeanie Sent from my iPhone On Nov 20, 2014, at 11:37 PM, bkbarney via CMLHope <[email protected]> wrote: Yes Jeannie. I used to go every two weeks, then once a month, now it's once every 2-3 months. I will go every few weeks while off. Don't plan on being off long term...but enough time to clear up some of these side effects and build some physical strength/ muscle back. Then return and try to maintain my physical self. I wish you could have some respite from the head aches. Jaw pain..Have you been in remission for a while? They told me to pre-medicate so minutes before taking sprycel with a pain med, t so I would not get such bad headaches. I traded off between tramadol and imitrix. They did not want me to get chronic headaches- migraines...I wish I could help more. I know we are all so different. I am blessed to not have blood count issues. I am sure it is because I have never been able to tolerate more than 40% of any drug or less....Stay close. take care, Beth -----Original Message----- From: icandoallttc via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Nov 18, 2014 4:05 pm Subject: Re: [CMLHope] Beth sprycel ? Thanks Beth I have been thinking about going off for a while due to sore Ear jaw. I have been on sprycel for 5 years now. Do you get your CBC while you are off to see how your counts are doing? Thanks so much. Jeanie Sent from my iPhone On Nov 18, 2014, at 4:55 PM, bkbarney via CMLHope <[email protected]> wrote: HI Jeannie, Yep, when I take time off, when I feel too toxic, I just go off for a brief period, doctor supervised, and then go back on. I usually have no withdrawal, but I am careful to not stay off too long or I will get the uptake side effects returning to the medication. For me, that's migraines with sprycel uptake...I am in complete remission from Dr. Druker's lab....a first, so am very blessed. Just navigating side effects, and the muscle issues...doing the best I can... take good care... Love, Beth -----Original Message----- From: icandoallttc via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Nov 18, 2014 3:53 pm Subject: [CMLHope] Beth sprycel ? Hi Beth Sorry you haven't been well. Prayers to you and family. When you stop your sprycel do you just quit? If you do do you have withdrawal? Just wondering. I thought you were never supposed to just quit a drug. Let me know And thanks. Blessing Jeanie Sent from my iPhone On Nov 18, 2014, at 4:39 PM, bkbarney via CMLHope <[email protected]> wrote: Dear Sue, Sorry for the delay of this message. I had been feeling a bit under the weather. As many others have done, I want to welcome you to our family here of CML'ers...we share a lot, care a lot and encourage each other through this journey. I think many of us have gotten weird responses from those we have shared with regarding our illnesses. Many times it takes us educating them about exactly what this means..even then, it's hard because we all respond differently to the meds and thus, each have our own issues, side effects etc.. to contend with. I hope gleevec will work for you. It's nice to know there are now several other meds that are options..so remember that as you start this journey. Know we are here to share this journey with you. I am sorry you had some unsettling and upsetting reactions when you shared with others. Sometimes people just don't get it or are miss informed. My own sister- who is an oncologist..said...take a pill..it's like taking a vitamin everyday......so sometimes even the doctors, ( she is in research and not patient care so doesn't have the input from real people), have not a clue as to what we go through. Hope you and others have a great week. I will try to write something to update folks before the holidays. in short. I am doing O.K. Taking a sprycel holiday for two weeks, then back on post Thanksgiving. Am finally getting to the bottom of muscle disease issues..will know before the year is out exactly what this is and what the treatment is. Happy about getting clarity..Long time in coming. Love to all... Warmest regards..18's Beth -----Original Message----- From: 'Susan Zimmerman' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Nov 18, 2014 2:09 pm Subject: Re: [CMLHope] Great NEWS Greenie, we're traveling to Florida to Treasure Island, arriving Saturday the 22nd. Only be there 4 days, then going to New Orleans for T-giving.. Keep that warmth going for us for just four days.....please! It's 17 degrees here right now. Just FYI Susan -----Original Message----- From: Myvety2k via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Nov 18, 2014 11:06 am Subject: Re: [CMLHope] Great NEWS I'm getting out all of my ice fishing clothing, long john's, etc, it's 60 deg. here in Fort Myers, FL. But then my daughter is visiting friends at the Wisconsin Dells and they live in Hawaii. It's 12 deg. their. It's going to get back up in the low 80's by Thursday here. They warm everyone. greenie In a message dated 11/18/2014 10:23:10 A.M. Eastern Standard Time, [email protected] writes: Great day I Florida. Glad everyone is good. Happy dance to all. Jeanie Sent from my iPhone On Nov 18, 2014, at 9:04 AM, "'Susan Zimmerman' via CMLHope" <[email protected]> wrote: Thanks Marty and everyone for your kind words. I'm also gaining back energy daily. Hey there, as a wrestler that Marty claims for me, I'm wrestling for all of YOU to steadily move forward in your own healings or remissions, which means I am praying for you to our precious heavenly Father, who knows your hearts. Marty, we expect news soon of a kidney transplant happening for you!!! Meanwhile all of our wishes are for you to feel well and have no problems with dialysis and energy. Love and 18's, Susan F. Zimmerman -----Original Message----- From: Marty Gartenberg <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Nov 17, 2014 10:38 pm Subject: Re: [CMLHope] Great NEWS Susan, Are you sure that in your former life you weren't a boxer or wrestler? You beat the crap out of CML! Good for you! We are all doing the "happy dance" for you. So now you really know the meaning of 18's. Marty On Fri, Nov 14, 2014 at 12:18 AM, 'Susan Zimmerman' via CMLHope <[email protected]> wrote: Hello All, Great e-mail to the new "Sue", Marty!!! You are adorable and I love you. Welcome Sue from one to another....I have GREAT NEWS: You guessed it, I am MMR!!!!! My numbers are .04% after 8 months on lowest dose of bosulif. YAY, doing the happy dance for all He has done for me. I went 7 yrs and 2 mos. without any medication after being on gleevec 400 mg. for 2 yrs and 3 mos....had a brain hemmorhage, then another, so stopped gleevec for 7 yrs. Tried every other one and had some adverse bleeding effect that kept me from taking it. In 2010 had a major stroke, but doing fine now. Their only reasoning is I have cavernous malformations in my brain. Do you think this is any indication of the fact that I pride myself on being a little wacko??? Wanted to share how my numbers have plummeted: March 2014 - 23.5 Int'l. Scale BCR/ABL April 2014 - 9.0 Int'l Scale WITHOUT any meds May 2014 - 5.85 on bosulif 100 mg for only 30 days June 2014 - 3.7, 60 days on bosulif Oct. 2014 - .11% Nov. 2014 .04%, achieved MMR - hooray!!! Please continue praying that I have no bleeding side effects from 100 mg. They keep encouraging me to take 200 mg, but I say why rock the boat when this is working just fine? I am a rare bird, so don't try to copy what I do, anyone.....(about meds) Y'all are always in my prayers. I thank God for being able to know you and have the privilege of calling all of you my friends. Greenie and I met a few months ago, and it was wonderful! Try to enjoy every day as if it were your last, because we never know when He'll call us home! Just lost two good friends, and know they are in a better place. Love and 18's, Susan F. Zimmerman -----Original Message----- From: Richard H <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Nov 13, 2014 11:45 pm Subject: Re: [CMLHope] newly diagnosed Safe Travels my Friend. Richard H. On Wednesday, November 12, 2014 11:16:26 PM UTC-6, wa2yyx wrote: Hi Marcie, We are all captains of our own ships because we steer our own ships in a positive direction. Do you remember me saying that Leukemia is not only a disease of one's body but their mind as well. It is how you handle yourself that makes a big difference. If someone goes around with a terrible attitude then that is what they will get. If someone goes around with a good attitude then that is what they will have. Anyway, I have an appointment at Tampa Hospital for an annual exam for a kidney transplant. It's just that I have to be current with everything just in case it happens. The hospital is more then four hours away so I have to get some sleep now. 18's, Marty On Wed, Nov 12, 2014 at 8:53 PM, 'Marcie Goodman' via CMLHope <[email protected]> wrote: Marty, What a lovely email to Sue. We are traveling together and I feel like you are the Captain of our ship! Thinking about you and keeping you in my prayers Love and 18s, Marcie Sent from my iPhone On Nov 12, 2014, at 8:34 PM, Marty Gartenberg <[email protected]> wrote: Oh yes Sue, family. Well you know what they say? You can pick your friends but your family is here to stay good or bad. No matter what you can't change them. As my father used to say, "never argue with a moron, fool, idiot or liar or someone that won't listen to what you have to say because no matter what you try to tell them they will never change. But your focus shouldn't be on them but people that are willing to help you. That is what this site is all about as you can see. When you travel on your journey all of us will be traveling along with you. I really mean that, and you will see that your not alone but with some very nice people that will be supporting you along. 18's, Marty On Wed, Nov 12, 2014 at 4:25 PM, smgedit <[email protected]> wrote: Hi, First off, I love your terminology! (I'm a writer and editor by trade). Secondly, thanks for your support. I'm limiting who knows and who doesn't know what is going on for now but unfortunately one of the ignorant statements was by a family member. Oh well. I'm happy to have found this site and to be meeting nice people like you on it. Sue Hi Sue, I read your post and just wanted to make some comments. Personally I think that your hanging around with some people that I would classify as Anal Orifices. And I only say that to be polite. Or even more possible they suffer from Rectal Cranial Inversion (their head is up their Azz. I have to tell you that if one of them had CML or any other type of cancer then they would certainly have a different attitude. I hate to say this but sometimes you should keep some things to yourself because of people like that. The less they know about you then the better it will be for you. Anyway, now that is off my chest let me go into something more important. First, you have come to right place. All of those that are here are very compassionate and really care about each other. They have already gone through this and will be very happy to help you out with any questions and anything else they can and will help you with this. CML is not what it used to be because it is not a "death sentence" anymore. There have been so many improvements in it's treatment, not like in my day. I don't know what you may know about me but I am here to help you out in any way that I can. If you have read any of my posts you will see what I mean. Remember any time that you would like to post anything please feel free to do so. I would like to welcome you to this site. Sue, whenever I end any of my posts I end it with two numbers 18 which is the symbol for life. 18's to you Sue. Marty On Wed, Nov 12, 2014 at 10:23 AM, smgedit <[email protected]> wrote: I was diagnosed with CML a little over a month ago and had a bone marrow biopsy and started taking Gleevec last week. I'm trying to learn as much as I can about CML and my oncologist is great about giving detailed explanations and answering questions. But I was wondering if anyone else ever got what I consider a strange reaction from others about my news. In the past week, I've had people say the following things to me which upset me a lot. "So what's the big deal? So you have to take a pill...I have to take this antibiotic for my tooth infection this week too." "There is so a cure for leukemia. Plenty of people are cancer free. You don't know what you are talking about." (This after explaining about the drugs and "response," vs. "remission." etc.) "Well I hope you have a speedy recovery. Good luck." I know I can't put my energy into dealing with this right now but it is weighing on my mind anyway. It made me happy to find this group online where I know people can at least "get" it and where some of you have been living with CML for quite a while. Anyway, that's my first post. Nice to meet you. Sue -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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