I was on Sprycel 100 mg, then lowered to 70 mg, now back to 100 mg/day because my last BMB showed numbers going back up. My doctor says I have a rare form with some DNA changes occuring. Having multiple side effects, anorexia, wt. loss, hair loss, leg pain, headaches, severe fatigue, trouble sleeping, short of breath, no energy, tremors... almost like I have the flu all the time. Does anyone else have these many side effects, or might it be the "rare" thing my doctor has referred to?? don't quite understand what the specifics are yet. Oncologist just informed me of this last week.
I had all the same side effects that you described, except I gained weight and had swelling in the abdomen. I always thought I had trouble breathing from the swelling. I was on 40 mg, after a brief trial of going off CML medication, hoping to be one of the slight % of people that have been able to go off medication without their #'s going up. I couldn't even handle the lower dose of Sprycel. So, I switched back to Tasigna at a lower dose 300mg, but am unsure whether this low dose will be enough.
I've had trouble with all 3 of the medications: Sprycel, Gleevec, and Tasigna. I've felt those exact side effects you describe. My quality of life was so bad, I felt I had to try something else. I wish I could offer you more encouraging words, but hopefully it helps a little to know you ARE NOT the only one experiencing these side effects. I really hope these side effects subside for you.
- Sprycel Information for Consumers
- Sprycel Information for Healthcare Professionals (includes dosage details)
- Side Effects of Sprycel (detailed)
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