I hated Sprycel so much when I started with it, and now I wish I could stay on it. It just stopped working I guess. My numbers have been bouncing around and the doc finally called me in (I go on Monday) and I'm sure he's going to start me on something else. I just hate the thought of trying to get used to another set of side effects. Sprycel worked so well in the beginning, I never thought I'd have to be on anything else. But I have never hit MMR and am now 21+ months in, sooo. I was all excited about maybe being in clinical trials, and then at least reductions in mg or being totally off it someday. I gotta admit, I'm just pretty bummed now. And I know I may not have to go thru what I did with the Sprycel. The side effects were horrible and I was out of work for 4 months. But I did get used to them. I also know there's a chance I won't have the same problem on something else. My biggest problem is my own negativity. I'm not just a 'glass is half empty' kind of girl. I start out that way, but in no time it's 'OMG, THERE'S NO MORE GLASSES IN THE ENTIRE WORLD, WHAT ARE WE GONNA DO!!!!????!!!'
So, I'm not there yet, which is good, but do have questions. Has anyone ever heard of anyone who has gone thru all the TKI's and not reached PCRU (is that even right initials? Gotta love the brain fog)? What happens then? I'm really not afraid of this. I know there isn't much chance of that, but I thought maybe if I just got the thought out of my head completely, it would go away.