My name is Koralia, I am 33 years old, I live in Greece, and I was "lucky" to join the CML community last May.
I didn't have blasts, but I had metamyelocytes. Bone marrow biopsy showed less than 5% blasts in the bone marrow.
I started nilotinib 2x300 on June 1st.
Due to changing doctors, I have had my PCR tests by two different labs during DX, but I only have the results of the first lab, which was 58%.
I am now waiting for my Q-PCR of 3 months from the second lab, which will be accompanied by the corresponding q-PCR during DX as well, which they did on bone marrow sample, but I just don't have those results yet.
I am a bit anxious about my 3-month results, but I'm handling the stress well altogether :)
I have a question on CHR: I reached 10,700 WBC at 20 days after starting nilotinib and reached 5,950 WBC at 40 days. Great response according to my doctors. HB stayed at around 12, platelets went down to 320.
At two months, I did another test which came back with 7,100 WBC, and another test at 3 months (1 week ago), which came back at 9,290 WBC.
Now that last blood count scared me a bit, however everything is a bit pumped up, my HB is 12.3, my platelets are 375, and the neutrophils/basophils/whatever-else-is-there percentage profile is still getting better. My doctor is not worried at all, and she is rather optimistic that I will get a very good bcr/abl result, and she told me that I can calm down :D
Are there cases that you get such a response (5950 WBC), and then lose CHR at such a short time (not that I lost CHR, but just asking)? Has anyone else had a similar experience with mine regarding WBC?
I just want to add that before CML, my usual count was around 8500.
Thanks, and it's nice to join your community :)