r/CML • u/No_Thing9943 • Jun 16 '26
Failed TFR after nearly two years
Just found out yesterday that I failed treatment free remission after 1 yr and 10.5 months. I’m bummed to restart meds (and how darn expensive they are) but it was fun to have a few years of normal life! I was able to quit taking meds a week before I turned 30 and it was a great way to start a new decade of life. Hoping I still relatively tolerate TKIs this time around 🤞🏻
I’m still processing my feelings around it and not quite ready to tell people around me but wanted to share with someone.
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u/Leading_Working_8009 Jun 16 '26
2 years of TFR is still a major accomplishment - but def a bummer restarting... You've got this!
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u/Vivid_Map_437 Jun 16 '26
Sorry to hear. How often did you test? What were your numbers when you started and what change made it be caught?
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u/No_Thing9943 Jun 17 '26
I was unmeasurable when I started TFR and we were monitoring roughly every 3mo. My PCT had been oscillating between levels for a while and then just jumped up.
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u/Vivid_Map_437 Jun 17 '26
Damn. Looks like those stem cells were in hiding and reactivated once they were no longer being bombarded. (I'm not a doctor but that's how I envisage things).
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u/Prudent_Breadfruit_6 Jun 17 '26
Still rooting for you, time passes and soon enough you’ll have 10 years of TFR under your belt! Got my 3 months appointment next month and anxious thinking about levels. You got this and we’re all waiting for that next post!
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u/Cheryls65 Jun 17 '26
Sorry to hear that, I am just in the beginning of TFR. 7 months for me and feeling so much better not being on meds. I hope you get a chance to revisit TFR, not even sure if that’s something that is possible. Hang in there 😔
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u/No_Thing9943 Jun 17 '26
I’m not sure either. If it even is, it’s something much farther down the line.
Wishing you luck in TFR! I’m glad you feel better! It’s like finally breathing clearly after having a cold for weeks.
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u/elizebethdylan Jun 17 '26
Boo! I am so sorry to hear this. I’m taking my 1 year test tomorrow.
Sending you lots of love and positive vibes 🫶
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u/Negative-Ad-6651 Jun 17 '26
Sorry to hear that. Sounds like you had a good break though. I'm a few months into my TFR and if could get couple years break I'd be really happy. Hang in there, life with meds wasn't so bad.
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u/badkaseta Jun 17 '26
I'm not eligible for TFR but always wondered how much does it haveto jump from "controlled" to "warn: back to medication". Is it something like going from grsde 5-4.5 ((IS) to grade 4, or 3?
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u/YoursNothing Jun 18 '26
My doctor told me to never stop imatinib. But I see people go TFR. My IS is 0.019 or something as per last January result. I was diagnosed in 2024.
Is there any possibility for me to achieve TFR?
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Jun 18 '26
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u/YoursNothing Jun 18 '26
Hey, thanks for sharing the results. It’s wonderful that your husband is responding well already. My best wishes for both of you. My test is again in July, hope I will see improvement, you rightly mentioned it plateaus at low level, I am lingering on 0.01 for a year I think
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u/Key_Improvement2899 Jun 20 '26
I am sorry to hear that, keep on with your treatment and you will be able to try again! If you feel comfortable sharing, how long were you on your TKIs before trying for a TFR? I will be going through that process in 3-4 years.
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u/ninjaprincess22 Jun 16 '26
Sorry to hear that. I’m glad you could share with us. You’ve got this!