This past January 10th I had to stop my Sprycel 70 mg temporarily in order to get over a pleural effusion. The pleural effusion was half gone by two weeks later; almost entirely gone at the end of Feb. My CML history was that I was laid pretty low by the side effects of fatigue and depression when I started on Gleevec back in 2009. There were other side effects that were equally awful: malaise, anxiety, periorbital edema, random nausea, persistent myelosuppression, kidney dysfunction. After two years of this, I switched onc's, medical centers, and tki - to Sprycel. Most of the side effects disappeared. The kidney impairment (all docs in agreement was caused by Gleevec) appears to be permanent, but stable. As the years rolled by, the fatigue/depression hung around in spots, mildly, but then despite therapy, got steadily worse until it was a real chronic problem, completely eroding the quality of my life. This past year was pretty relentlessly dark. Every physical movement had to be well-considered first as to whether or not it could be done and, if so, was it worth it. Nothing about life was good.
Two and a half weeks into being off Sprycel, I woke up one morning OK. I was OK. Everything was OK. I got all my energy back. Everything seemed doable. I could talk and think normally fast. I could move. My muscles were weak, but in a different way - my legs didn't feel like they were bags filled with wet sand - they felt like they were engaged, but needed to do more, and like they COULD do more. All things seemed possible, with time. I looked forward to things I had turned down before. I could plan. I could say yes. I noticed all the pretty things around me, felt the breeze coming in the window, jumped up to fetch my own soft drink - even asked my husband if he wanted anything while I was up (!), ran up and down the stairs for items without thinking about it, parked the car without thinking about how far away the store was. I suddenly noticed other people and their problems - like my husband! - and started to help. Every day has been a good day since. I'm still a lazy, neurotic, procrastinating, imperfect human being, but I haven't felt more myself since before September 10, 2009 when I took my first Gleevec. I never thought I would ever feel this way again - I had totally given that idea up as fantasy - and had tried hard to adapt to a diminished life.
So, this was definitely a real thing. Possible causes: the pleural effusion had probably been there for many months and possibly made me feel worse than anybody would have thought. I didn't have any overt symptoms, but when I finally said the magic words, "short of breath" (which I didn't really think I was - meh) everybody rushed into position and the Sprycel was promptly stopped. So, the resolution of the pleural effusion may have made the difference. Or, depression is supposedly self-limiting and cycles in people - maybe this was coincidence? Or, it was the Sprycel.
There were two other very noticeable things that came back: skin color and eyebrows. Almost overnight my skin was the color it used to be, and I no longer had to cover myself with bronzer just to not scare the horses. My eyebrow hairs came roaring back, and they were even all going the correct direction! That was a nice surprise.
But now comes the Flowers for Algernon (Charly) part. I will have to go back, of course. I've now been off 10 weeks; I will probably re-start at 12 weeks (3 months.) For the past five years my PCR's have all had a nice zero to the right of the decimal point; lately I had even been receiving the report: "below the level of quantification (< 0.01% IS)". The PCR at 5 weeks off was 0.02. I just had another one done at 9 weeks off, and I fully expect that to be higher still. In hopes that I can stave off another pleural effusion, but even more significantly to ME, the soul-sucking fatigue and hellish depression, I'm going to ask my onc to let me go back at 20 mg. He will say no. I have been at 70 mg since 2011.
I like Sprycel, all things considered, and I don't want to switch. There are case studies that show Bosutinib can worsen pleural effusions from Sprycel, possibly because they both impact Src. All the TKI's cause fatigue. I was much, much, much worse off on Gleevec; why would Tasigna be different for me? While it's true I haven't had the requisite 2 years of PCRU, I have been between MR3.5 and 4.5 for five years. I'm officially elderly (gag) and probably would be better off with a lower dose anyway. I would like to propose to the onc that I go back on at 20 mg and see if I can get back to a PCR of <0.01, even if it takes most of a year. Isn't this a reasonable course?
