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CML - My fluctuating BCR-ABL/ABL level

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Hi everyone!

I graduated in the UK when I was diagnosed with CML (Chronic Myeloid Leukemia) back in June 2022, at the age of 22. The initial test results indicated that I was in the Chronic Phase, with a BCR-ABL/ABL level of 29.4%. I was prescribed Imatinib 400mg, and initially, the results were surprisingly good:

3 months: 0.18% (I returned to my home country but continued using the same 400mg of Imatinib)
6 months: 0.034%
12 months: 0.031%
These results were well below the threshold of the best response according to ELN guidelines. However, it seems that the numbers have remained stable and have not decreased further:

15 months: 0.031%
18 months: 0.019%
21 months: 0.014%
24 months: 0.024% (current result)
This is the first time my BCR-ABL/ABL level has increased, and although it is still below 0.1%, indicating that I am still in Major Molecular Response (MMR), I am a bit concerned. Should I consider switching to other drugs? Would it be advisable to undergo genetic mutation tests or have more frequent tests?

I would appreciate any advice or discussions on this matter. I hope you are all doing well.

Best regards,
Season

Hi Season,

The primary goal with our treatment is to achieve MMR, which is of course 0.1%, and you achieved that way ahead of the "optimal" schedule.

The recent rise is not anything to worry about. Results that low do tend to bounce up and down a bit. Even if you tested the same blood sample twice you would get two slightly different results.

So in theory you have absolutely no reason to switch drugs, as you are very much in the "optimal" response zone. But, you are a young CML patient and there is much discussion on whether younger patients may have different goals to older ones. If TFR was a strong goal for you, it may be worth switching to one of the more potent drugs which can help drive a deeper response giving TFR a better chance to succeed. Similarly, women who may want to have a baby might want to drive the CML to the lowest possible levels before. TFR is of course possible with imatinib, but the newer drugs offer better chances.

I was at a CML conference where this was discussed a few weeks ago. The video isn't available yet, but will be shortly I believe and I can post it here when it's ready.

David.

Hi David,
Thanks for the response! It really gives me more confidence. I was initially treated in Hammersmith Hospital, where doctors discussed with me about drug selection. They told me Imatinib is a safer/slower one. I accept it. To be honest, I am not that rushed to TFR. For me, I think the mindset is just as long as I'm alive and safe, that's fine, cuz I do not have much side effects(maybe too early to say:). But yeah for now, I think I will just stick to the current treatment.
It would be nice if you could share the video when it's ready. Thanks!

Best,
Season

That’s great! They know what they are doing in Hammersmith, so you are in the very best of hands.

I’ll post that video, and the rest of them from CML Horizons 2024 as soon as they are available.

David.

Hello Season and all,
I have also had rising numbers. Mine have been as follows
June 2023 39.07% (diagnosis)
Sept 2023 4.96%
Dec 2023 0.041%
March 2024 0.049%
June 2024 0.077%
So mine have increased twice in a row and are getting closer to 0.1%. My regular hematologist oncologist is currently on maternity leave and the doc covering her does not inspire confidence. When I asked, she said if I go up again they will change my meds. Should I be concerned? I would be grateful for any insights or advice. I have been on imatinib 400 for the last year
Winnie

Hello Season and all,
I have also had rising numbers. Mine have been as follows
June 2023 39.07% (diagnosis)
Sept 2023 4.96%
Dec 2023 0.041%
March 2024 0.049%
June 2024 0.077%
So mine have increased twice in a row and are getting closer to 0.1%. My regular hematologist oncologist is currently on maternity leave and the doc covering her does not inspire confidence. When I asked, she said if I go up again they will change my meds. Should I be concerned? I would be grateful for any insights or advice. I have been on imatinib 400 for the last year
Winnie

Hi Winnie,

It’s always a worry when numbers go up, isn’t it? But you are still firmly in MMR.

The difference between 0.041% to 0.049% is statistically negligible, they are basically the same result. So really you have just had one rise (to 0.077%). If you search this site you’ll see lots of people being concerned about blips in their results, and nearly every time the next result comes down. PCR results are generally not always a one-way journey.

Have a read of this thread. This was me about 10 years ago, worried about what looked like a substantial rise but in the end was just part of those ups and downs we get.

https://cmlsupport.org.uk/thread/10316/when-does-blip-become-trend

David.

Those videos are up now - see the post in the orange box at the top :)

Thank you, David. I read all of the discussion, it made me feel a lot better.
:-) Winnie

Videos and resources look fantastic! Thank you for sharing.