You are here

29 months in TFR - my miracle continues

Categories:

Hi everyone

I thought I would just update you on my continuing involuntary TFR (treatment-free remission) attempt. It is now almost 2.5 years since I was forced to stop taking imatinib due to intolerance, and I'm overjoyed to report that my latest BCR-Abl test shows positive but unquantifiable (i.e. somewhere between 0.001 and 0.003%). My doctor is surprised and delighted, especially because she told me many times that I would never be a candidate for trying to stop taking the medication, given that I never reached the milestones in time and that I was borderline accelerated phase at diagnosis.

For those new on the forum, my message is that you must never give up hope. During this journey, I've twice been told that I had only a 20% chance of survival, and I never dreamt that I'd one day be off all treatment and still doing well (and being able to eat grapefruit again). Also, please make use of the great resources and make contact with the wonderful people here on this forum, many who have helped, guided, advised and inspired me through the dark days.

Wishing everyone all the best for 2025, with hope for your healing and prosperity.

Best wishes from South Africa

Martin

Congratulations Martin!

Over 8 years TFR, I continue to test positive at low levels.

Buzz

Woohoo lucky dog! You’re one of those 40 percenters who can achieve and sustain TFR.
My hats off to you.

JP

Thanks so much Buzz and Joe, and congratulations Buzz on your ongoing success with TFR. My doctor said pretty much the same as what your experience has been - she thinks that I won't ever be undetectable, but that it could stay stable at very low levels of BCR-Abl. My hope is that more and more patients are able to reach this outcome.

Best wishes

Martin

Congrats and thanks for sharing!

Congratulations Martin!! Always be healthy and lucky!
Thanks for sharing the great news!

Wow, congratulations Martin!

Congrats and good luck with getting better and better.

May I ask how old you are now and how many tki's you have you taken？

Thanks Wstevenson, Sav_5 and David for the kind words and support!

cml1234, thank you too for the wishes. To answer your question, I'll be 47 in May and was diagnosed in November 2015 aged 37. I was put on dasatinib first, struggled to reach the milestones and eventually got to MMR after 24 months, but then developed swollen lymph nodes from the dasatinib and was put onto imatinib in May 2018. I stayed on that until August 2022 and have been off TKIs ever since.

Please bear in mind that I was forced to try TFR because of serious side effects from the imatinib that only showed up after 4 years - my doctor told me from the start that I would never be a candidate for TFR. You can read about what happened to me in this old thread:

https://cmlsupport.org.uk/thread/14565/sudden-transformation-mr4-blast-c...

My experience just shows once again how unpredictable this condition can be.

Good luck to everyone with your continued recovery!

Best wishes

Martin

Martin, congrats! I just tried TFR, having all the requisite criteria and profile, but alas, at my first check-in at 5-1/2 weeks I had zoomed from my usual 0.002 to 0.333! A number I have, literally, never seen since I started 16 years ago when they didn't have IS. I am not crushed or anything, and very grateful I have dasatinib to return me to my beloved "two zeroes to the right," but still, I sure would like them to figure out the big mystery as to WHY TFR is not in the cards for me. (I had the same fast rise - although not that fast - the two times I had to stop to get rid of pleural effusions, so I'd say 3 trials are pretty dispositive.) I am, on paper, a perfect candidate, but no go. I'm OK, just old, and the side effects have just sort of mooshed into regular old age complaints. So, all you newbies out there - just hang on and eventually you'll be indistinguishable from your normie peers!

Hi kat,

Sorry, I only saw this post now... Thank you so much for the kind words and encouragement. I'm so sorry that TFR wasn't possible for you, but I'm pleased you've been able to stay positive and pragmatic about it. I really wish we knew more about why some people are successful and others not. I'm positive that the restart will bring you down back to MR4.5 fast.

Thanks for sharing the experience and thanks once again for all the positive thoughts and encouragement you gave me when things looked bleak. Please keep us updated.

Best wishes

Martin

Will do, Martin, and thanks.
Kat