Hello to all !
I have been following this forum for some time now. I am a 31 year old guy from a small European country - Estonia (part of EU). I have great access to treatment and monitoring, no worries there.
I was diagnosed in late November 2020 with a BCR-ABL level on 80 % in the bone marrow (100 % FISH). I was put on imatinib 400 mg/day immediately accompanied by hydroxycarbamide for two weeks to get WBC to normal ranges (at diagnosis 300 with 2 % blasts). I responded quite well, I got my blood counts to normal ranges within a month with very limited, if any side effects
My PCR from blood at 3 months was 16 % (down from 80 %, not ideal but satisfactory according to my hematologist). They also did a FISH analysis on my bone marrow and the result was 14/20 i.e. 70 % of cells containing the Ph chromosome. They also found a new translocation between chromosomes 8 and 21 in my Ph+ cells (not the AML translocation, just an atypical change). Third, hematologist acknowledged that myelosuppression is also starting to kick in (platelets 90 and ANC 0,92)
She switched me do low dose nilotinib (400 mg daily - 200 mg taken twice per day) with an exception of one week of standard dose (400 mg twice daily). At first, platelets rose & ANC stabilized but then came crashing down to platelets 27 and ANC 0,48 over few weeks. My 4 months BCR-ABL (after taking 2 weeks of nilotinib) was 11 %, too soon to make any conclusions, I guess. I am currently off treatment for the past 10 days to let my blood counts recover
Did another bone marrow aspiration today to check how the hematopoiesis is doing in the marrow. Also gave a blood analysis which showed that platelets and ANC have now kept their low level (27 and 0,45 - at least they did not decrease). Marrow analysis results are in hopefully by Wednesday
I thought I would ask some questions in here since it seems there are lot of different (and mostly positive) experiences here
1. What is the genreral opinion and experience here on additional chromosomal changes in Ph+ cells (i.e. clonal evolution)? I know that some are defined as high risk changes and affect outcome but I did not find absolutely any data on the web regarding mine. There is also a lot of data that many chromosomal changes can be innocent bystanders. My hematologists (I took a second opinion on this matter just in case) said that these things can appear and may easily disappear (since they are in the Ph+ cells, they will die along with the cells). Some have been identified to worsen the prognosis but I also have read a lot of studies where it has been stipulated that there is no significant impact on response, especially for patients on 2nd gen TKIs. Although on a genetics level they indicate some kind of disease evolution.
It is quite uncomforting though that additional changes are formally a criteria for accelerated phase, although it was not present at diagnosis (I think). The rest of my clinical data at diagnosis clearly suggests chronic phase.
2. Do you have any knowledge or experience in regards to nilotinib dosing which could overcome the myelosuppression?
3. How long did it take for you myelosupressed to achieve some stability in your blood counts?
I have my ups and downs but I try to stay positive and think that even though I do not have had an ideal response, I still have an response and the myelosuppression is an indication of medicine efficacy rather than a true toxicity. Hopefully this clears out sometime soon. I really enjoy taking the pills so being off the medicine makes me nervous of the final treatment outcome.
Thankful for any feedback.