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No MMR after taking Nilotinib for three years.
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Yes, I tried Flumatinib at my first diagonosis, but it made my platelets drop to single number. Then one doctor recommed switching to Nilotinib. So I have been taking it for three years by now. But a few months ago, I ran out of medicine, and didn't take Nilotinib for over 20 days, I don't know how significant that had on my results. I also smoke a litttle, eat spicey food. I did't follow the instructions that no food 2 hours before and 1 hours after taking medicine.
I had similar experience with myelosupression and believed that it was a side effect of TKI, but my doctor explained that CML affects platelets as well, so if they drop down on a new TKI, it means the TKI is working and the large proportion of circulating platelets are actually dysfunctional CML cells. His suggestion was to pause, take the transfusion if necessary (which I did), resume once the counts increase but on a lower dose e.g. 50% and test often till the healthy cells take over.
The first time it happened on Bosutinib, I was on a holiday and didn't test for 3 weeks, so both platelets (20) and erythrocytes (Hemoglobin 6.7) dropped dangerously low. I stopped Bosutinib and switched to Dasatinib, which didn't work very well, but it kept my WBCs in check and allowed platelets and erythrocytes to recover. Several months later, I restarted Bosutinib, but it didn't work any longer.
In the mean time, a biopsy identified 2 mutations, 1 was ABL1 and the other non-ABL1. This explained why multiple TKI monotherapies didn't work.
So I started full dose of Asciminib and Dasatinib and this time only platelets dropped down within 4-5 days. As it happened too fast, I stopped the therapy for 2 weeks and resumed at half dose once the platelets recovered to 50. It's been working well and I'm still on it. Cell counts are all normal now and BCR has been dropping steadily.
So I cannot advise you what to do, but just wanted to let you know that I would not dismiss Flumatinib if it worked, depending on how effective it was against WBCs, but probably reconsider it at 50% dose and confirm an emergency transfusion is possible. You should test often, 2-3 times a week, until the counts stabilise.
Platelets should never go below 20 as it may lead to spontaneous bleeding in brain and death, so be very careful.
Btw this is the first time I've heard of Flumatinib, so I'm not familiar with its short/long-term side-effects.
Trying other affordable TKIs like Dasatinib is also an option.
CML and platelets
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