After a wonderful but enforced year off all TKIs with my BCR-Abl levels fluctuating around 0.003%, my latest test has come in at 0.01% after 12 months and I’ve just about lost MR4 now. I have my appointment with the doctor next week and need to decide what the next steps are as I know she will insist that I restart treatment. The consultant who phoned me with my results also said that this is an indicator that I have to restart sooner rather than later. Although I know that the TFR protocols now define failure as loss of MMR, my counts are moving in that direction and psychologically I feel I should restart too as it will give me peace of mind.
Bearing in mind that 100mg dasatinib caused my lymph nodes to swell and 400mg imatinib caused severe myelosuppression (both of these side effects happened after 3+ years of treatment) I’m wondering which of the four possible options to choose:
1) Try to convince the doc to let me carry on without treatment until I lose MMR (I doubt she’ll say yes given this was a forced attempt to stop and against medical guidelines)
2) Try to argue for 50 or even 20mg dasatinib (apart from the lymph nodes I felt very good on this drug)
3) Argue for a reduced dose of imatinib
4) Start on asciminib and, if so, whether to argue for a lower dose than the starting one.
I would be grateful for any suggestions or advice! Buzz, I know you have been tracking TFR attempts very closely so I would be particularly grateful if you could provide some guidance – I know your readings fluctuated as high as 0.015% in your successful TFR.
For interest, my BCR-Abl counts after stopping treatment on 18 August 2022 were as follows:
August 2022: undetected (the only such result I've ever had)
September 2022: 0.003%
October 2022: 0.003%
November 2022: 0.0042%
January 2023: 0.003%
April 2023: 0.003%
June 2023: 0.0039% (loss of MR4.5)
August 2023: 0.01% (borderline loss of MR4).
Thank you everyone and enjoy the weekend!
From a beautiful spring day in South Africa