Hi everyone
I had an appointment with my doctor again today and thought I’d share my latest results after 17 months of involuntary TFR due to unacceptable side effects. Unbelievably, my BCR-Abl level is now “below the detection limit, but still detectable” which my doctor explained to me is below 0.003%: they can detect the presence of BCR-Abl, but the level is too low to quantify. Given my history I’m thrilled with this result, but at the same time I’m devastated to read of the passing of Sandy Craine and Rocky Mountain Gal, who were such incredible human beings and whose posts and advice gave so much support to me and to so many. So it’s really bittersweet for me to post this good news.
At the same time, I just want to offer some hope to people who are struggling with side effects and with slow progress. I was borderline accelerated phase when diagnosed, and my progress towards MMR took 24 months. My doctor told me that I would never be a candidate to stop TKIs because of this. Furthermore, I’ve now failed two TKIs (dasatinib first-line and imatinib second-line) due to late side effects, and according to the doctor they would not ever have considered me for a stopping trial, but there was no choice because my blood counts were so low on the imatinib. But so far, so good – and this raises the question whether or not the guidelines on when someone can stop TKIs are too strict? I reckon it’s an open question, especially with the advent of asciminib, and I’m hoping that more and more of us will be able to stop TKIs at some point, even those of us who had slow progress like me. I am so grateful to people like Alex, Buzz, David and many more who convinced me not to push for a restart when I had a blip a few months ago. Sincere thanks!
Wishing everyone healing and happiness in 2024.
Best wishes
Martin
