Just wondering if there are other 100mg slugs out there on the most powerful, approved CML drug, Sprycel? I am feeling very, very disappointed. My PCR came back the same as my last. I am still not MMR and have been on Sprycel since Sept. 2010 (18mos.). I am very scared to say that I think I am developing PE. I cannot shake this cough and I have been wheezing. Ironically, I only have trouble breathing at night when I sleep, and occasionally at that. I am too scared to push to have it checked (although onc knows). Since Gleevec didn't do it, I am very terrified the same thing is happening with S. I did not make the NCCN milestone for MMR at 18mos. But, I guess stable buys me 3 more months at least. I feel sick to my stomach. I was so hoping for MMR. Reading about how so many reach MMR within 6 mos to a year and others within a year, even with higher WBC and beginning PCRs, I cannot say how disappointed I am. And Michael reaching MMR on 20mg is a miracle. The same thing happened to me with G at 9 months. Can someone just stay stable for years and years and never reach MMR? I was so wishing for a dose reduction. I have had mouth sores for over a month now and talking and eating is such a chore (this has been on-going since 3-months on S). My PLT are still low. Any guesses on why the PLT won't come up? If I come out fine with the PE, (just have to get the guts to beg for an x-ray), would a dose escalation be called for? I am pretty active (which I think may help with PEs). I know, I should be satisfied the PCR is stable. I was even imagining hanging with my kids as they got older. I am getting way too bold with this CML thing thinking that I will see them grow up (I am so close with my oldest starting Kindergarten this fall). Can you worry yourself into an SCT? Ugggggh. I so want to get off this CML merry-go-round with my life in tact. Please Mr. & Ms. scientists, come up with a cure already! Needed to vent. I know stable is OK, but it just doesn't feel that great.
Tedsey
P.S. I have never missed a pill, ever, since dx.