Dear Mabdou,
I switched from a standard dose of Gleevec to 100mg of Sprycel in August 30, 2010 (don't ask me why I remember that date, I guess in my little life it was an important event). After 3 months, I achieved CCR. I am still on 100mg Sprycel and remain CCR (according to my onc). Although Spycel is considered one of the strongest TKIs and gives many people a deeper response quickly, it is not always the case. Trey can correct me, but I think at 1 year around 50% have had a MMR. That is a decent result, but, it is more or less, 50/50--but, it is higher than Gleevec according to BMS).
Instead of dose reduction, my hem/oncs gave me shots of Neupogen, Neulasta, Aranesp, and blood transfusions. As my counts were getting worse on Gleevec (and my PCR remained flat after 9 months), my onc felt it couldn't hurt to try Sprycel. On Sprycel, we did the same routine, shots, transfusions, etc. After about a year, my counts came up to a point where I could get away without shots and transfusions. However, I still have pancytopenia. It is just not dangerously low as before. Luckily, my immune system appears to be working. I have been able to fight off common bacteria and viruses. And I am not sick all the time. Just like before I was diagnosed with CML, I hardly got sick (that is why my diagnosis was such a big shock to everyone--I was always the "healthy" one). I do worry about coming across something serious, but ironically, an acquaintance's husband almost died from a rare virus recently. He was very healthy. And I have been living with low counts and have leukemia. So, I am either lucky, (because I was near him right before he got sick), or my counts are high enough to ward off evil (just, kidding, I mean, protect me from other sickness).
You are concerned about the decrease in your counts. I understand. I was very worried too. But, I have now lived with pancytopenia and for years. I feel healthy, I have been healthy, I am very active and exercise daily, I don't feel any side-effects, and live a normal life (well, as normal as can be with a deadly disease--I view the CML like a crouching tiger always ready to spring, but I really hope the Spycel is taking the spring out of his crouch--sorry, just trying to be funny). My little son is now in public school and is exposed to many things. I also worry about that, but I survived preschool (lots of snotty toddlers and diapers). Nevertheless, since I cannot see the bacteria and viruses coming at me, I just try to be wise. I keep my hands away from my face, wash my hands and use hand sanitizer (like most crazy germaphobic mothers in the USA do--and some with healthy blood are much crazier than I).
From your last post, your counts still look good. This may or may not lead to myelosuppression, etc. In my case, it was not a gradual decrease in counts. With hydoxyurea and Gleevec, my counts plummeted immediately. Then my counts went up and down when I was only on Gleevec, (but always low). On Sprycel, my counts upped a little, but have not really recovered, especially my PLT. Just wanted to let you know if you do become myelosuppressed, try not to get too worried. There are things that can be done to help and keep you healthy.
Please keep posting how you are doing. I wish you good health and good counts.
Tedsey
