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Latest update on my TFR attempt

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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

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

Buzz

Martin,

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

David.

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

Martin

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.

David.

Hi everyone

First, thanks so much Pojo and David for the very encouraging words! I have been so busy work-wise that I haven't checked back here recently, and I really appreciate all the kindness. I'm so sorry, David, that your TFR attempt was short-lived... would be interested to find out more if you would be happy to share. As you say... not great, but at least you were able to try! Hoping that you returned to MMR quickly after restarting and you never know: there may be a second attempt sometime.

Second, I just wanted to update everyone that it's now been another two months of below the detection limit and I'm still able to stay off the TKIs. We're still doing tests every two months until August, when it will be two years since I took my last pill. The doctor reckons there's about an 80% chance I'll be able to maintain this response, but given my mad ride with this condition I'm not celebrating too soon, but just hoping that it continues. I just want to repeat my message that TFR can be a possibility even if things look bleak at the beginning, and I hope that more and more people will be able to reach this state as time goes by. Thank you once again for everything, everyone on this site. Your kindness, support and advice has meant so very much to me during this crazy ride.

All the best to everyone.

Martin

That’s wonderful news, Martin!

Thanks so much Olivia! I'll be rooting for you to reach this outcome too.

Congratulations on your continued success Martin!

Buzz

Thanks so much Buzz, and for all the help and advice along the way. Your experience has been incredibly valuable!

Forgot to mention that, if I have to restart some day, it will definitely be asciminib. According to my doctor it shows a lot of success with minimal side effects.

This is all great news, Martin! I'm getting antsy to try asciminib, myself. If I could find someone to tell me it makes the puffy eyes go away, I'd be there in a shot.

Asciminib does seem quite promising, and there are high hopes for it. But remember, there were very high hopes for ponatinib too and there are very good reasons we don’t see that many patients taking that.

It has a better side effect profile than most other TKIs, but when you dig into it about 30% of patients will have elevated lipase which isn’t so good. I think in about 8-10% of patients this can be grade 3/4, which isn’t good news either for you, or your pancreas.

I have just got back from CML Horizons 2024, but in the 2022 edition (https://www.cmladvocates.net/cml-horizons-2022-hybrid-conference/) - see if you can fine me in the photo at the top! - there was a debate on whether asciminib is the magic bullet we hope it is.

This is the video. Prof Apperley speaks about how they so see cardiac issues with asciminib from time to time, and while it is good we need to be wary.

https://vimeo.com/778915853

All things considered, if imatinib worked for me without major side effects it would be what I would choose!

David.