I've been lurking and reading about CML since I was diagnosed exactly one year ago at 38 years of age. CML was discovered during a routine blood test, and my WBC was at 147. My hematology oncologist put me on 400mg of Imatinib on January 31st, 2019.
My peripheral blood counts dropped quite nicely and by end of February, my WBC dropped down to normal levels. On the sixth month, an ultrasound showed that my spleen was back to normal size (16cm down to 10cm). I thought things were going great! Didn't really think about CML except for the side effects of the Imatinib.
However, fast forward to January 2020. My IS Burden % is at 0.73. I met with my hem-onc today and he told me that we have to watch it closely at the 18 month mark. If I don't make it to 0.1% or lower, I may need to switch to a different TKI. What really scared me, is that he is recommending me to a Transplant specialist. He mentioned that at my age, if Imatinib is not giving me the desired results, he may decide to go the transplant route.
I am trying to get a sense of where I am at versus members of this support group. Has anyone experienced a very slow path to MMR?
I did find some posts about members being anxious at 0.2-0.3% at the one year mark. Makes my 0.73% seem like a heck of a lot!
Here are my latest results.
Date / IS Burden %
1/29/2019 - 134
4/29/2019 - 29
7/29/2019 - 3.3
10/21/2019 - 2.2
1/13/2020 - 0.73