I'm hoping for some help on what to discuss with my doctor later this week...
I'm 20 months in to my CML treatment, taking 400 mg of Gleevec daily (200 in morning and 200 in evening to manage side effects). I just received my latest PCR results, and they aren't what I was hoping. I am pretty sure that when I see my doctor later this week, he's going to want me to switch to a second generation drug. He wanted me to switch in February of this year when I was a year into treatment and had a PCR of 0.4. I told him then I wanted to wait 6 more months before switching. We were both happy when I hit 0.1 in May, but now in September I'm at 0.3.
Here is my BCR-ABL history (all international scale):
01/29/15 195 (diagnosis)
04/15/15 76
05/06/15 16
08/14/15 1.6
11/10/15 0.6
02/16/16 0.4
05/20/16 0.1
09/14/16 0.3
My FISH test at diagnosis was 100% (<1% blasts). I was 0% at 8/14/15 (3% blasts).
I'm starting to get really worried about how I'm not responding like I read others are on this board and like my doctor thinks I should be. But I'm also very nervous about the side-effects of the 2nd generation drugs. I'm only in my early 40's, and I'm worried about introducing some serious side effects into my life at such a relatively young age.
Any thoughts on asking to up my Gleevec dosage instead of switching to a 2nd generation drug? Or am I worrying too much about side effects and should just switch in order to try to get a better response?
Thanks so much for your thoughts!