I was on Sprycel for almost 2 years. After several months, I developed PE and my onc reduced the dosage from 100 mg to 80 mg. At first the PE was manageable but eventually became quite debilitating. I had a needle drain, but the PE quickly came back. I switched to Tasigna (been on it for about 6 months) and the PE symptoms (shortness of breath while climbing stairs and even walking) disappeared. However, I recently had a sonogram (unrelated to the CML) and was told that it showed some PE. So at least for me, the PE has gotten much, much better -- to the extent that I'm not aware of it -- but apparently there is still some PE in both lungs. Regards, Barry
On Mar 16, 10:35 am, janekaye <[email protected]> wrote: > Just wondering if the PE ever really goes away completely. I've had > it for about two months now, not enough to interfere with regular > activities really, but still noticeable. I've had two chest x-rays, > both indicating the PE, and actually I've decreased my Sprycel from > 140mg to 100mg partially to address that issue. Everything I read > tells me that having the fluid drained is a last resort b/c it just > returns almost immediately. I'm hoping that over time the body just > absorbs the fluid, but I imagine once you've had PE, it will return > from time to time. What do you think? > -janeaye > > On Mar 15, 12:03 pm, Sean <[email protected]> wrote: > > > Hello all, > > > Been a long long time since I last wrote to this group. Thought I'd > > check in. I was dxd in Oct 2002 when I was 21 years old. My WBC at > > time of diagnosis was 498,000. Since that time I've been on Gleevec > > for the first 6.5 years or so (between 400 - 800mg but mostly the > > latter), and I've been on Sprycel for the past year, first at 140mg > > and now at 170mg. I'm young, so I suppose that helps me tolerate the > > high doses, as I had virtually no problems on Gleevec for all those > > years other than minor fluid retention in the ankles. I've been CCR > > for a long time but guess I forgot to tell Zavie about that :) > > > My PCR tests have been hovering between 0.08% (8x10^-4)and lower, the > > most recent at 0.0012% (1.2x10^-5). The switch to Sprycel was an > > effort to get to PCRU, but now I've got pleural effusion. It's not > > particularly noticeable, but chest x-ray confirmed it along with > > increased shortness of breath climbing stairs, etc. Doc said to switch > > to 170mg 6 days/week instead of 7. If this doesn't work he may want to > > switch me to nilotinib, but that doesn't sound like a fun drug to me. > > > Question is: Is PCRU really that worth it? I think I'd rather stay on > > a lower dose of Sprycel, rid myself of the fluid as a result, than > > switch to yet another drug. The PCR results are already really low. > > > Thoughts? > > > Hope everyone is doing well, > > Sean -- [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
