Melanie - My experience with imatinib was like yours. I never had a happy day again after the very first Gleevec pill (400 mg). Well, except for a brief stoppage, a couple of weeks in which my former self returned like magic. I was "better" at 300 mg and 200 mg, but those were very brief times and I was told they had to be temporary, that 400 mg was the proper dose and I would absolutely have to get back to it. So, I struggled mightily for 2 years, sick ALL the time, depressed (like, stay-in-bed-all-day, can't-stop-crying kind), face disfigured by edema, all the while being told I was "doing great." The help for me came in the form of changing doctors, to a nationally known CML specialist an hour away, and a change in drug to Sprycel. Every aspect got better - not perfect - but so, so much better. My first doctor knew only Gleevec, had only a few CML patients (this was 2009), and kept insisting that "most people tolerate the drug very well." He thought I looked and seemed fine (since I wore makeup to my appts and don't make a habit of breaking down in public). His words didn't cheer me up; they had the opposite effect - I felt unheard and invisible - plus he couldn't give me any concept of a light at the end of the tunnel. I kept asking, when will the side effects let up? No answer. The test for how much Gleevec is in your system was, apparently, not accurate then, and nobody suggested that maybe I was on too much drug, for me. Anyway, if I had known then what I know now, I would've asked for that test and maybe I could've stayed on Gleevec at a lower dose. Who knows.
After reading posts since about 2010 (on the US site), I think the universal CML patient story is: massive and unnecessary initial confusion, anxiety, fear, and actual illness that eventually, with self-education and efficacy, gives way to some enlightenment and relief. Trouble is, it usually takes months and years to get there. And, largely, you have to do it all on your own. I think a very, very great deal of distress could be avoided with better initial care and counseling. I think we've come a long way on the flexibility in dosing, and yet here you are, Melanie. Thank goodness for the two forums - I can say, unequivocally, that I have learned more from them (and my own internet research) and received more comfort and solutions from them than I ever have from my doctors.
