Thanks, Sassenach - I hope it all will be transient, especially the nausea and stomach pain. I remember being so utterly bewildered in the beginning (on Gleevec) when I felt so incredibly BAD ALL the time and my then-onc just cheerfully ignored it all. He had nothing to offer, of course, just useless nostrums. But if he could have just told me, "It can be tough, you're not dreaming, hang on, it gets better, it will lift in a few (weeks, months) I would have been helped so much more. Instead, I think he got very impatient and tired of my complaints. As far as he was concerned, this was a miracle drug with trivial and negligible (if any) side effects. And so, added to the nausea/malaise/no appetite/toad eyes was shame and fear - that I was an outlier patient, a whiner, making it all up, a psycho. "Most people tolerate the drug very well." That's what he said, over and over. Then a real miracle occurred: I found this site! And I found out that I was NOT crazy.
Anyway, blahblahblah. I just wanted you (and everyone else) to know that every mosaic tile of opinion, experience, and knowledge that you offer here is so incredibly helpful and useful to others struggling along this path.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.