As I get ready to make the big leap I was wondering if anyone was in a similar situation to mine at any point in their treatment. I know that my situation is a little different. I have done very well on Gleevec from a response standpoint (MMR within 11 months and pretty much CMR ever since, with bouncing in and out of detectable). Side effect wise I was actually doing fairly well too, no stomach issues or anything like that, but the myalgia has gotten so bad I can barely get out of bed in the morning. So for better or worse I am making the change to Sprycel in the hopes of gaining some quality of life. I'll note that if the muscle pain was stable I would likely ride it out as I have so far, but it is progressively getting worse, that is what is pushing me to try something else.
I'm trying to get an idea of what to expect. I know PE and all that is something to watch for. I know I should expect headaches at first. The main thing I am worried about is a sudden drop in my counts which have been very stable and mostly in normal range. I know when leukemia burden is high and Sprycel treatment begins it can wipe out cells very quickly and cause suppression. I am trying to get a sense of what happens when someone who is essentially doing alright takes Sprycel and how likely it will be that I develop myelo suppression. Of course we all respond differently but trying to get an idea nonetheless. I really wish my doctor would start me on a lower dosage, I think it is nuts that I am starting at 100mg given where I am, but she is not willing to go lower dosage unless there is a reason. My thinking was start out low and ramp up if response is slipping, she wants to start high and come down if side effects are problematic.