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Nilotinib resistence (?) after TFR attempt

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Hello everyone!

It's been a while since I wrote in this forum, although I've been occasionally reading you all!

I 'd like some advice - and propably some emotional support since I'm freaking out a bit.

So, a few words on my history: DX May 2019, b3a2, started nilotinib 2x300 on june 1st 2019. Reached MMR by Nov 2019, and MR4.5 (undetectable) by October 2020 where I've been since.

Fast forward to January 2024, and after a ridiculous story with ob-gyn issues (not worth expanding, one mistaken diagnosis after another, and an operation that probably wasn't needed), my haematologist suggested TFR to avoid immunosuppression, which we tried starting January 1st.

2 first PCRs came back undetected, the one of April comes back 0.04, the one of May comes back 0.13 ( which I learned with delay early June).

Restarting of Nilotinib on June 11th, while giving a sample for PCR, which came back 0.27. At this point I considered this normal, and probably the highest I should get, since after that I restarted the pill.

Gave another sample 2nd of July, comes back in today... 0.46.

Ok. Officially freaked out. Tomorrow I have a scheduled bone marrow biopsy and aspiration, plus rt-pcr and q-pcr, and mutation analysis. Mutation analysis was tried already by the lab, but my bcr/abl was probably too low to detect mutations in the previous samples.

Thoughts?

Best regards,
Koralia

0.27, starting to retake and getting 0.46 one month later is nothing to freak out about IMHO. You were basically not taking the medication at all. If anything, you can say that you are not a candidate for TFR, but not that there is a resistance. It took me two years to get under 0.1. I would take another one in August and see where you are at.

I would also say not to worry too much , or freak out. There are a lot of reasons why it can take a little while for the drug to bring a response. You only had 3 weeks or so between restarting and the next test, and it takes a little while for the drug to reach therapeutic levels and of course the disease had some momentum as it was on the rise so the nilotinib has a higher disease burden to work against.

I would bet that a result taken a month later will show a drop.

David.

Hi both,

Thank you very much for your encouraging responses!

We anyhow opted to do a series of tests (incl. Biopsy, mutation testing, pcr) so we will have all the data available to understand what's going on, if anything, and decide accordingly.

I appreciate the help that I always find in this forum 🙂

BRs,
Koralia

Hi all

So... once again, I need to say that this forum is a source of calm... you always help me regain my senses! Plus, there's collective knowledge in here that's available faster than any doctors' team will give you.

Short update: yes we did a bone marrow biopsy, and gave a sample for a new PCR. No, we are not switching pills yet: My doctor discussed my case with other specialists in cml and they said it's too early to say, we should give nilotinib a chance. Pretty much what you guys said.

My doctor is very reassuring, because of course all the mental burden resurfaced and regardless of our course, I anyhow freaked out.

I hope to get some "days off" and enjoy some long-due vacation.

Anyhow, thanks again!

Regards,
Koralia

Hi all,

Here's the update:

jan'24 -> UPCR, Tfr start
feb'24 -> UPCR
mar'24 -> UPCR
29th apr -> 0.04%
25th may -> 0.13%, decide to restart tki
11th june -> 0.27%, tki restart
1st july -> 0.46%, wtf moment 🤣
24th july -> 0.04%, wow, back to MMR

ColoradoGuy, David, you were so so right!

Thank you!!!
Koralia

Hi, Koralia.pappi, I was glad to read your post. I attempted TFR after being on nilotinib 150mg qd for 2 years (3 years at CMR). After 3 months my PCR jumped to 0.02%, too high we thought for a mere blip. I restarted immediately after receiving the results and met with my doc later. He was ok with it. So I have my first test at the end of this month and I'm already "thinking" about it. I'm glad things went well for you!

Pat