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Should I consider a change in meds?

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Hi all

Hope everyone is keeping well.

I have my next appointment with my haematologist in a couple of weeks and have just got my latest BCR-ABL results from August. I’ve included the last few below. They’re still going downwards, but very slowly to the point where I’ve pretty much plateaud.

I was diagnosed in August 2021, so just over 2 years on Imatinib. I tolerate it very well, hardly any side effects apart from the odd episode of heart palpitations.

I’m now wondering if I should consider a change, or to carry on with the imatinib given the above?

Any advice or thoughts gratefully appreciated. I’m also not sure of the long term impacts if I stay on imatinib and the levels continue to creep down slowly?

May 2022: 0.81%
August 2022: 0.5%
November 2022: 0.4%
February 2023: 0.21%
May 2023: 0.18%
August 2023: 0.16%

Thanks
Dan

Hi Dan

You will find talk about tortoises and hares on this forum. Hares get to MMR (<0.1% BCR ABL) in a few months; tortoises take rather longer, and often have a plateau where it remain for a few months. Mine was at 0.6% for about 6 months (months 12-18 post diagnosis) Then suddenly 0.06% I think - this was 15 years ago!

Your test result is still trending down. At your current level you are at very little risk. Side effects are tolerable - lucky you! I'd suggest ploughing on and see if the result suddenly drops from its slow reduction to a solid MMR.

Hope that's useful.

Why would you want to change ??
Given the sensitivity of testing a PCR of 0.16 is virtually at MMR
The major reason for no change is that it is better to continue with the tki that you know rather than the one which you dont know.Dasatinib has a side effect profile of 20% of those on 100mg experience pleural effusions.Nilotinib is hard on the heart and if you are now experiencing palpitations perhaps you should avoid it.In addition there is the fasting regime .If you have problems with the alternatives to imatinib then you are left with no alternative to going on to Bosutinib which can raise lipids etc
In addition if you ever find that imatinib is not giving you the desired level of response you can increase from 400mg to 600mg for a while (most of us can tolerate)-can you increase the dose above standard level with dasatinib or nilotinib?
Regards
John

Thanks both, your replies are really helpful.

I don’t want to change TKI, I was just pondering whether a change might accelerate the response and whether that was worth the risk. You make some valid points, so thank you.

I’m also half expecting my consultant to suggest it as he has before, so good to know what I’m going into bat with! The dose increase might be worth raising so I’ll have a think about that.

Thanks again,
Dan

Stay the course it took me 2.5 years to get MMR on Nilotinib and I plateaued around 0.16% for 6 months then a sudden drop to 0.07% - it’s certainly a marathon and not a sprint and “slow” responders to just as well. You’re virtually MMR and the test isn’t perfect so you could well be.

No reason to change unless you have several upticks, plateaus are what I like to call stable.

Al

Thanks Al 👍

Hi Dan,

It looks like you are responding well to treatment with imatinib. My downward trajectory was very similar to yours (see below). Unless you see a definite upward trend you should be fine staying the course with your current treatment.
I'm at 11 years since diagnosis and my last BCR-ABL1 was 0.005%. Some of us take longer to get a deep response. I think you'll get there.

Dan - Kirk
0.81% - 0.91%
0.5% - 0.43%
0.4% - 0.36%
0.21% - 0.17%
0.18% - 0.09%
0.16% - 0.06%

Thanks Kirk - crikey, that is similar! Fingers crossed I get to the same place you’re at 👍

Hope you’re well. Take care