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BCR ABL numbers going up

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Over the last year my PCR result has gone in the wrong direction. Results (all IS), most recent first:

July 2020      0.1219   (is this MMR or not quite?)

March 2020    missed due to Covid-19

December 2019   0.0931 (MMR)

October 2019   0.0831  (MMR)

June 2019    0.0154   (MMR)

March 2019   0.0686   (MMR)

December 2018   0.0924  (first MMR ever)

(Diagnosed April 2017)

So it has gone steadily up with the last three tests, though very slowly, but the trend seems ominous. I've called my hematologist and asked to have my care transferred to a leukemia specialist. Do you think I'm overreacting? My health is generally very good but I just don't like the trend.

You are technically just out of MMR. I haven’t yet reached MMR after 27 or so months but hover around 0.1. But to be honest really their is no difference between 0.1 (where you are) and 0.09 in December. You did dip quite low in June 2019 and I’d say it (although technically MMR) is a little surprising that you have consistently gone up from then to roughly where you are now. I know 0.5 log is in margin of error and you’ve almost had a log increase since then which could suggest a resistant mutation. It’s hard not to overreact but I’d say if your doctor isn’t particularly worried then you shouldn’t worry. I am having to learn to put more trust in them more. It’s hard when it’s your body. What meds are you on and dosage and have you had a mutation report? If it helps your last 3 results are pretty much the same although technically up. I don’t even think my consultant would say they’re “increases” and he’s an expert and never worries. The most important milestone I am told is to stay in CCYR which is 1% or less so you are far from danger at those speed of increases.

Alex

From looking at these results I don't think there is much difference in the last three results.  0.1219 of course makes it seem worse because it is just outside MMR but I think the outlier is the 0.015 result.  I don't think this is something to be overly concerned about.  Certainly I would make sure you miss NO doses, take it exactly at the same time every day, Take Vitamin D3, and don't miss any appointments.  

If it trends towards 1.0 then yes I would get a mutation test and figure out which TKI is the most suitable option for you.  Being seen by a leukemia specialist is a good idea.  I would not be overly concerned though as you have responded and reached MMR.  That is a really good thing and switching TKI's may help you get to a deeper response.

Thanks Alex. I have been on 400mg imatinib since diagnosis. My doctor did request a mutation test which came back negative. I am working on getting in to see a leukemia specialist at Stanford medical center. At my low rate of increase it would take a long time to get into a danger zone, I think, but staying in MMR is important so I want another medical opinion. Thanks again.

Thanks for this advice and reassurance. I was not able to make my March quarterly appointment because everything was locked down and I was stuck at a friend's in a different city for March-April-May until mid-June when things started opening again. Anyway, I look forward to talking with a specialist who can help me figure out if switching to another TKI is the best route now. Thanks again. It is really nice to have this resource for other ideas.

Hi,

You go for double dose, insted of 400 mg, take onther 200 mg per day, per day 600 mg, it will work good.

Thanks 😊😊