I am more of a "lurker" these days on the CML forum than a participant but I need some advice. I have been a turtle since March 2005.
Gleevec for 1 year (didn't hit the desired numbers). Clinical trial on Sprycel for 2 1/2 years (pleural effusion issues). Tasigna 800mg since October 2008 and reduced to 600mg just last year.
My lowest PCR ever in the last 11 years was .035. I have fluctuated up and down for so many years that I've come to the conclusion that it's my "zero".
Here are my results the last few years:
2/14 - .11
3/14 - .095
4/14 - .12 (bone marrow biopsy - cyto negative)
6/14 - .13
7/14 - .068
9/14 - .05
12/14 - .048
3/15 - .047
6/15 - .035 (lowered dose to 600mg - side effects improved)
9/15 - .044
12/15 - .037
4/16 - .036
8/16 - .069
10/16 - .16
I just had a blood draw today for another mutation test. I had one in 2012 that came back negative but my doctor said the lab they used back then may not have been reliable because all their mutation tests were coming back negative...which didn't seem accurate. She noticed that I had a positive mutation result early on.
I really don't stress these days since it has been over 11 years of fighting the good fight and I'm very happy with Tasigna and the few side effects I battle. I just haven't seen this big of a jump in a short period of time.
Do you think this is something I should be concerned about? Should I ask to go back to 800mg? I really don't want to increase my dose since 600mg is the recommended starting dose. I also don't want to switch meds but I will if it is necessary. I guess my remaining two options are Iclusig and Bosulif. Can anyone provide feedback on their results and side effects? Any advice would be greatly appreciated.