First of all, I'm anxious about the facebook page for just us CMLer's, of course I'll have to have some help getting it started...I am on myspace but my children and stepchildren helped me with that. I finally got it down to a science, and now must learn about facebook. Anyway, I agree with those of you who feel this is not a place to discuss religion. It is not. This is strictly for the help and support of those with CML. I'm not downing religion....everyone has the right to worship but this is not the place for it. I have survived 5 years with CML...taking Gleevec, now on 600mgs but most days cannot tolerate above 400mgs. I cannot think what the remissions are called but I'm in two of them but have never reached 0. My body has finally adjusted to the Gleevec, compared to the hell I went through when first starting it...however, a lot of side effects have remained. The Gleevec causes me to have almost unbearable acid reflux, I burn from my tongue, all the way down to my stomach. I am prescribed Nexium and Zantac which neither are easing it up any anymore. I still have the dirareha , uncontrollable even with lomotil. When I use the bathroom, my stomach cramps severly and it burns as if someone is holding a hot match up my rectum. I still do not have an appetite and I am not eating right what I do eat is literally forced down...and I have to take pherghan to often keep it down. I still suffer from bone pain especially now with the weather cold, I have cramps hit me in some of the most unusual places...mainly the arches of my feet and hips...they are more like charlie horses. I'm going thru nightsweats and then I have chills....thought this might be symptoms of menopause. Point being my cml specialist keeps me wanting too switch to sprycel. I've read some and he explained the side effects...which my main concern is fluid build up around my lungs as I also have COPD. But I keep wondering if I might feel better on the sprycel. For those of you on sprycel, please so kind to discuss with me what it has been like for you.I'd truly appreciate your info and is there anyone else with CML and COPD? Hope all is well with everyone. Love,Peace,Hope & Prayers, Pat in TN
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