A few weeks ago, I had my 15 month tests done. I went to a new doctor -- who is a CML specialist -- because I had a lot of problems with my old one. I'm really happy with the new doctor.
My history was (on 400mg Gleevec):
Diagnosis: FISH 97%, PCR IS 145%, 2% blasts, no spleen enlargement, WBC 140k
3 months: FISH 71%, PCR IS 39.7%
6 months: FISH 4%, PCR IS 5.7%
9 months: FISH 1.2%, PCR IS 4.6%
12 months: FISH 0.8%, PCR IS 2.3%
The crux of my issue was that at 12 months my FISH was 0.8% and PCR was at 2.3%, so it was unclear if I had a CCyR. My old doctor was of the "everything's great!" club because everything was going down, albeit slowly and below the "optimal" rate. I certainly wasn't on track for a MMR by 18 months.
My new doctor agrees that my results were sub-optimal and wants to see me have a faster and deeper response, mostly because of my age (34) and the fact I'll have to manage this potentially for 50+ years. So, she ran the whole set of tests, and I had a BMB to see what was going on in the marrow. She posited I might be a high metabolizer of Gleevec, which is why my test results have been going steadily down but not at the ideal amount. [Note: Apparently Novartis isn't offering the Gleevec blood levels test anymore. She said she tried to order it for a patient last year and wasn't able to. I guess this is to push more people to Tasigna!]
The good news: The PCR went down to 0.71% (2.1 log reduction from 100%, 2.3 log reduction from diagnosis) and the BMB confirmed CCyR -- no evidence of residual leukemia.
The bad news: It doesn't appear I'm on track for the MMR at 18 months. And, the mild anemia I had in months 1 to 6 has returned.
I have a follow-up visit on Monday to discuss whether or not to change my treatment regimen. As previously discussed at the initial meeting, the options are: (1) stay as is, (2) increase Gleevec dosage, or (3) move to Sprycel. I have very few side effects on Gleevec, so I'm not inclined to switch drugs. I'm also concerned about increasing dosage because of the mild anemia -- I don't want it to get worse.
I'd love some feedback on my situation to prepare me for this visit. Thanks!