JohnFromChicago - I am so glad you are zooming downward! Many of us from the older days were accustomed to waiting ever so much longer for the results you have now. (Turtles get there eventually!)
I'm sorry to hear that you are starting to see the cumulative side effects that our beloved Sprycel often provides. I share them all except for the gas. It's very hard to convince anyone about the muscle wastage/weakness, fat increase, tiredness - they love to blame it on age (me, not for you) and sedentariness (as if we don't all spend most of our time in front of screens, doctors included). When I point out that no variables in my life have changed except the introduction of a TKI, they just don't want to hear it. Largely, I think, because they don't have any solution to offer - we simply HAVE to take these pills. Or die. That's the way they see it. Reasonable, intellectually. No help in the real, immediate, emotional world of the patient, though. Sigh.
On this forum it isn't just old-timers like me who provide info - it often will come from younger or newer people like you who are trying something new, like dose reduction. It will help us all to see how you do at 50 mg and maybe even 20 mg. To see if you can overcome the side effects and not become resistant to the drug at 20 mg will help provide data, even if anecdotal. (My onc, a CML expert, still believes in the resistance mechanism, but we have Trey and Scuba and others who are doing well on 20 mg.)
One caution - It's at about the point where you are in time that pleural effusions show up with Sprycel. Whenever you have a chance with a doctor with a stethoscope, be sure and get them to listen to your lungs VERY LOW DOWN ON YOUR BACK. That's the best way to find a pleural effusion early. I was symptomless for my first two and they were caught only by accident on chest x-ray.
My oncologist actually said she does not believe that Sprycel could cause muscle wasting. I am no expert but I really believe it does directly, indirectly or even both. The reason I say indirectly is Sprycel has also caused my testosterone levels to drop from around 800 to 400. I had results from about a year before diagnosis that show my levels at 800 now my levels have plummeted to 400. This indirect cause of muscle wasting I wouldn't think could explain why it happens to females on Sprycel though. This is why I believe there is probably a direct affect as well.
Also, thanks for the advice about the PE I will definitely keep a close watch.
