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Latest update on my TFR attempt


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


Congratulations Martin! I am very happy for your success. Please continue to update us.



It’s another month later … how are you doing? Fingers crossed your unintentional TFR experiment is still going well!


Hi David and Buzz,

Thanks for the messages - I'm on two-monthly tests right now so will only test again on 19 March, so no news at the moment. I'll update as soon as I get the latest results. Thank you both for the kind wishes, and I hope you're all doing brilliantly!

Best wishes


Update: 19 months tomorrow and still below the detection limit, but positive. Thanks for all the kind messages!

You’re an inspiration to us all. Congrats!

I am absolutely delighted for you Martin! I know the wobbles you had about sticking or twisting, and I’m so pleased it’s going the right way at the moment.

I am not a big “believer” in undetectable, because all you need to do is find a better PCR machine and you’ll be detected again. The main thing with TFR is holding a deep response which it seems you are doing!

Much of the research shows that the longer you hold the deep response, the more likely you are to hold it long term. I can’t remember the study, but I think it was roughly along the lines if you manage a year of stable low results on TFR there’s a very good chance you’ll remain that way. Not many relapse after that.

I had my own TFR trial recently, which failed spectacularly within just a few weeks. Shit, obviously … but at least I now am more certain of my future.