jmoorhou - It sounds to me like you have suffered a long time without truly being heard by the onc. I know the feeling! Ultimately, I gave up on Gleevec altogether and went to Sprycel. But before that, the occasional times he let me reduce the dose to 300 or 200 did make some difference in the myriad of side effects that bedeviled me. When I switched to Sprycel, although I had some transient things like rashes, and I did get in trouble with pleural effusions, that overall misery that I experienced on Gleevec was gone. This might work for you. You don't know until you try.
When I look back, I feel quite sad for the person I was then - I felt uncared for, truly. I had plenty of support at home and among friends, but medically I was abandoned. Worse, it was an intellectual abandonment. I could tell I wasn't believed when I complained, so I internalized that I must be crazy and I stopped complaining. But life - day to day life - was hell. I hope reducing to 200 will help you, but if not, don't be afraid to try Sprycel - even at 100 mg. If you continue to get good PCR numbers (or undetectables!) on Sprycel, you can try going down to 70 or 50. I believe the stats show few pleural effusions at 50.
Bottom line: If you are one of those people who feel awful on Gleevec, you might find that you feel pretty darned good again on Sprycel.
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.