I'm on 50 mg Sprycel. I switched from 400 mg Gleevec because I had suboptimal response with Gleevec (my PCR moved down very slowly and then plateaued), and also because I got tired of the g.i. side effects. They weren't debilitating, but they were starting to be a problem. As a teacher, I didn't have the option of running to a restroom when the Gleevec side-effects hit. And also, the hand/foot cramps were really bad and a couple of times occurred at really bad moments. . .once while on a dirt bike doing a fairly difficult trail up a rocky slope. . .my hand locked up in a weird position and I couldn't manipulate the motorcycle clutch. Not good.
I started on 100 mg Sprycel and my PCR numbers immediately dropped significantly, and I finally reached PCRU. However, after about 2.5 years (I think) on Sprycel, I started having pleural effusion problems. Had my lung drained twice. . .the first time nearly 2 liters of fluid, and the most recent just over 1 liter. I was off Sprycel for a bit over a month after the last pleural effusion, and now my PCR is back up, and I'm anxious to see how quickly it will drop back down to PCRU (knock wood). I'm hoping that 50 mg will be the magic number that keeps my PCR near or at 0.000, and yet doesn't cause pleural effusions. I think it may be a delicate balance for me. However, I feel pretty comfortable with the thought of being near, rather than AT zero. And I also don't have a problem with getting my lungs drained every once in awhile, if need be. It's not that bad a procedure. I do think that I will never be one of those people who can go off TKIs. I was off for a bit over a month, and went from zero to .18, which is a bummer.
Had I had better results with Gleevec, I would have preferred to stay on it, and eventually tried lower dose. . .but it just wasn't doing the trick for me.
Oh yeah. . .I also had REALLY bad restless leg syndrome at night while on Gleevec, and now don't have a problem with it at all.