JPD - I couldn't agree more. I can't understand why fatigue went unaddressed by the European LeukemiaNet summary of adverse effects/events (that Trey provided in another thread). Although I read about it often here, and my onc agrees that he hears it a lot from his CML patients, it still gets the run-around from everybody in the medical/scientific community. "Exercise - you'll get energy." First of all, that's like saying, "Oh, you're blind? What you need to do is see." Would if I could! But can't. Secondly, I've tried it and it's wrong. I feel worse and even more tired. Keeping at it doesn't help. No progress is seen. A flight of stairs at Day 20 feels just like a flight of stairs at Day 0. "Get more rest." Feels good, but doesn't make any difference. "Pace yourself." That means: don't do anything you did in your former life - become a rutabaga - take up jigsaw puzzles and daytime TV. "It could be depression." Wow - ya think? It's kind of a vicious circle, though, isn't it?
My onc has told me more than once (and I think he feels he is reassuring me somehow) that the fatigue is due to the TKI and not the CML. Okay, I say, nodding my head. So? What do I do? What do I do to get rid of it? What's a treatment? And, as long as I'm ranting, why is nobody studying this?
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.