Hi everyone! My name is jeff and though I've never posted before I really feel like it is time to speak up. I was diagnosed with CML about 4 months ago and I've been monitoring this site ever since. Because of all the posts regarding Gleevec side effects, I decided to be proactive, do some research on my own and not listen to my oncologists advice to "just take Gleevec".
Instead I found a clinical trial where I was assured of getting tasigna which is more powerful than Gleevec but with far fewer side effects. I've been on tasigna for several months now and am in hematological remission with no side effects at all! So everytime I read about someone saying "sure Gleevec gives me horrible aide effects but at least it's keeping me alive", I say how about trying tasigna and maybe you can stay alive and have a great quality of life too! Nobody knows I have CML and in fact other than remembering to take the meds, I barely remember either. Why?no side effects, no pain, nothing but my normal life. So please look into this fabulous drug and maybe it will work for you too! Good luck! Sent from my iPhone On Apr 16, 2009, at 5:36 AM, bikercub <[email protected]> wrote: > > I also have a hard time losing weight. I gained quite a bit when I > first started gleevec at 600 mg, the side effects were worse than they > are now and was taking 8 potassium pills a day with the dirutics for > the edema. Lost some weight when my dose was reduced to 400 mg and > now take 4 postassium pills a day. I've been the same weight pretty > much for the past 4 or 5 years, which is still too much weight! > > Yes, diarrhea is better than the constipation, and I guess it would be > described more like very loose stool than diarrhea. I also have gas > more than I used to. > > It's nice to know that I am not "faking it"! I used to be a person > who wouldn't even take an aspirin for a headache until it got really > bad and now I take so many medications/supplements/vitamins, some > because of the side effects. > > Thanks for all the responses! > > > > On Apr 16, 4:48 am, "Jody Capik" <[email protected]> wrote: >> one more side effect...I have a really hard time losing weight! >> >> Jody >> >> >> >> -----Original Message----- >> From: [email protected] [mailto:[email protected]] On >> Behalf >> >> Of [email protected] >> Sent: Thursday, April 16, 2009 12:34 AM >> To: [email protected] >> Subject: [CMLHope] Re: Gleevec Side Effects >> >> almost exactly my list... >> Patrick >> >> --- On Wed, 4/15/09, bikercub <[email protected]> wrote: >> >>> From: bikercub <[email protected]> >>> Subject: [CMLHope] Gleevec Side Effects >>> To: "CMLHope" <[email protected]> >>> Date: Wednesday, April 15, 2009, 11:54 PM >>> I was diagnosed with CML in May of 1992. I've been on >>> Gleevec going >>> on my 7th year. I was on Interferon for 10 years before >>> that. I >>> still have some effects of the Interferon, but I think most >>> of my side >>> effects are from the Gleevec and was wondering how many >>> others out >>> there have these. >> >>> I know there are newer drugs available, but Gleevec seems >>> to be >>> working for me and I don't want to mess with that! >> >>> I've always ran on the "warm" side, but >>> really feel warm all the time >>> now. I still have night sweats (which was one of the >>> things that took >>> me to the doctor 17 years ago!). >> >>> Sometimes I think that my co-workers feel that I am taking >>> advantage >>> of having a day off in the middle of the week to >>> "rest". I still work >>> full time and have pretty much since this all started. I >>> also "look >>> healthy" so I think that may throw them off! >> >>> I've read a lot of posts and read about various side >>> effects, but most >>> of those posts were a couple years back....unless I'm >>> looking in the >>> wrong place???? Is it because most people are starting on >>> the newer >>> drugs for CML now? I'm actually wanting to know how >>> people who have >>> been on Gleevec for a few years are feeling. >> >>> So here is my list of problems: >>> Fatigue, especially if I do too much >>> Day and night sweats >>> Muscle cramps, especially at night in the calves and arch >>> of foot >>> Frequent Diarrhea >>> Some edema >>> Nausea on rare occassions >> >>> So, am I crazy? Or are you guys out there dealing with >>> these too? If >>> so, how often? >> >>> Thanks- Hide quoted text - >> >> - Show quoted text - > > --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
