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Chances of TFR

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Hi,

This is my first post in this forum although I was diagnosed with CML in Feb 2016 and have been on Tasigna 800mg(2pills morning and 2 evening) daily since then. Its been 7 years on this journey and I am doing fine except extra fatigue.

Initially I was told that I will be on this drug life long but after seeing so many successful posts regarding TFR, I was encouraged to write this post and share my values with the community to know what they think because oncologists in our country never suggest or recommend patients to take this risk or even reduce the dose. Also we don't have other options of TKIs available in our health plans like Dasatinib (Sprycel), Bosutinib (Bosulif), Ponatinib (Iclusig) and Asciminib (Scemblix).

I get my BCR ABL Quantification test done annually and these are my results for last seven years.

May 2023 - 0.011 %
May 2022 - 0.0094 %
Feb 2021 - 0.0072 %
Jan 2020 - 0.0052 %
Jan 2019 - 0.028 %
Dec 2017 - 0.022 %
Dec 2016 - < 5 copies / ml

Please provide me guidance that should I consider reducing the dose or be off it.
I will be extremely grateful.

May I ask which country you live? I am curious regarding the health plan which restricts your choice (doctor prescribing) of TKI. I am surprised you are tested annually instead of every three months when bcr-abl > "undetected". Values lower than 0.01% justify testing every six months, but not when you are still positive.

You are doing very well. If you wanted to lower dosage, you would have to be tested at least every three months (ideally monthly for the first three months) to verify you have not lost response. Nilotinib is a dose dependent drug meaning it works better the more you take up to its toxicity level. You are at the high dosing level. A different TKI (such as low dose dasatinib) might push you into "undetected" and at a much lower dasatinib dose. But your doctor would have to have the medical freedom to work with you on this. Any time a drug change (or dose) is prescribed, more frequent monitoring is necessary.

Stopping therapy can be tried after three years of "undetected". That is the NCCN guideline. I tried stopping before this. My bcr-abl was ~0.01% and it failed (took nine months of up and down, but my trend was up). I went back on drug (low dose dasatinib 20mg)) and became undetected very quickly and stayed on drug for 3 years. After that I stopped therapy. I have been off dasatinib for over 3 years now and I remain undetected. But I also test every six months. to verify.

In your case, lowering your nilotinib dose is certainly justified, but only if you can test more frequently to verify effectiveness.

Tasigna 800mg for 7 years sounds like abuse.

In my opinion, based on your results, your doctor should have reduced your dosage after the first year of Tasigna 800mg.

If you can't first reduce your dosage you have absolutely zero chance of TFR. Begin by reducing to Tasigna 600mg four weeks prior to your next quarterly PCR and continue to reduce your dosage by 200mg four weeks prior to each quarterly PCR as long as your CML level isn't significantly increasing.

Let's see what happens.

Buzz

but he already has an increasing bcr-abl since 2020