Oh Pat, You are truly suffering - much like I did on the Gleevec only I didn't last as long on it as you have. There is no reason for you to be so miserably sick on this drug! I'm surprised you can take the Nexium and Zantac. I was prescribed a PPI like that and my doc started counting my Gleevec pills every month because they didn't believe I was taking it (my blood tests were showing such low levels of Gleevec because of the PPI causing me not to absorb enough of the Gleevec). When they finally figured out what was happening, they took me off the PPI. They put me on Compazine and some old stomach med which was liquid (can't remember the name). Neither really helped. Then I started to lose my eyesight and my memory was awful - that's when they switched me to Sprycel. At first they put me on 140 mg a day and within a week I couldn't breathe well enough to say a complete sentence. After 30+ years of smoking, I probably have COPD, too, or I am well on my way to it. Guess what? I still smoke. Yes, that makes me a complete idiot but I don't give a shit. (literally). Anyhoo, they lowered my dose to 100 mg a day and I've been tolerating it well ever since with a few adjustments here and there in my diet and by taking the Sprycel earlier in the day. Quite frankly, this is the most "normal" I've felt since being diagnosed with this crap. My depression isn't as severe, my anxiety has calmed down and my stomach no longer burns. My memory has improved and so has my eyesight. I do have to take Tums before bed most nights (that's the only stomach med permitted on this drug) and it seems to work. I did suffer with the coughing for quite awhile with my nose running constantly after taking the Sprycel, but loratadine (Claritin) calms that down to a low roar. Constipation is the bane of my existence with occasions of rectal tears, which is miserable, but it's nothing compared to what you describe. I'm now in "remission." If I were you, I'd give the Sprycel a shot - just make sure it's the lower dose and they can lower the dose even more if necessary. I still have some fatigue and weakness, but at least my whole body doesn't hurt anymore. I actually feel like I have a "future." I hope this helps you. I was terrified of even the lower dose after what I went through at the 140 mg dose, but, I was out of options (I was told the Tasigna would cause the same problems as the Gleevec). I am grateful I'm doing so well at this point. Now if I could just have the cojones to quit smoking.....
Take care! Kelly On Feb 7, 4:09 am, "[email protected]" <[email protected]> wrote: > 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 -- [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
