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18 months - PCR increase

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Hey guys!

Thanks so much for all the great posts and content. You helped me so much with my anxiety at the beginning.

My story began in December 2019, on a routine blood check (like most of you guys). I started with Imatinib (generic) in January 2020 and since then everything was more than ok.
BCR-ABL 6 months - 0.032
BCR-ABL 12 months - 0.00049

But suddenly, my PCR rise on my 18-month check - 0.0015

I did nothing different from before. The only things are: I gained a little weight (4-5 kg), got the Sinopharm covid vaccine, and maybe had a little less physical activity. And that's it.

My doctor is fine with the results. She's planning new PCR control for 6 months (this is common where I live). That's it. Although, I didn't get the impression from her that she saw a lot of times this kind of log-reduce.

I'm feeling pretty down last 5 days since I got the results. I've read the entire internet and I see these things happen. But the thing I'm most concerned about is - I'm still in a "critical" two years period where mutations and drug resilience happen more often and here we only have one medicine more (tasigna).
Seems like I feel even worse now than at the beginning, back then I had a strong faith in drugs & medicine, but now it's like I'm losing it.

P.S. Almost forgot to add, I'm taking vitamin D supplements daily (2000 UI).

The apparent increase in reading is not in the least significant. Any reading below 0.01% is absolutely fine, and variation of any results below that level is more a factor of the inherent variability of the test process than anything to do with your blood.  Back in the old days (I am 14 years in here) before the new generation of equipment came in, the labs only reported to two decimal places so no-one had the stress these spurious low numbers now impose. If your test in 6 months increases again, I'd expect the doc to get another reading on a shorter timescale. If three readings are all trending in the same direction then the doc may need to do something - not before. And I will bet they don't all trend upwards.

Thats a great response.  Fantastic.  I would not worry in the slightest.  There are gonna be some slight changes and it absolutely very well has to do with testing variables. 

Hello guys,

I owe you an update on this thread. Just got the message from my doctor and my latest BCR-ABL says undetectable.

However, it doesn't really mean I've got a lower result than last time - they've updated a software so all the results below 0.0032% now are considered "undetectable".

Thank you everyone once again, you are really a great support. Love to all of you ❤.

I notice in my own case that I have 10 BCR::ABL1 cells in 39,106 copies of ABL1, i.e. 10/39,106 x 100 x 0.6 [laboratory correction for IS] = 0.0153%

I am still in MR3.

I would need, as I see it, to drop to 6 BCR::ABL1 cells, 0.00921%, to become MR4.

Two BCR::ABL1 cells, in my case, would be 0.0030%, i.e. the same as your undetectable.

I do hope that I am understanding this correctly. 

A consultant scientist at Birmingham says the BCR::ABL1 cells can hang about in the air despite specialist air conditioning and filtration. So at low numbers, the results may be inaccurate.

 

I have the update on this after my latest test couple of days ago.

After the "negative" (under 0.0032) result 6 months ago, I again received a "suspicious" result - 0.0030.

The doctors are fine, since this is still MR4.5, but I'm feeling pretty down, it seems it is rising continuously in the last 12 months.

Not sure how to mentally overcome this.

If you are consistently getting at least 2 zeros after the decimal after only 18 months I would say you are doing stellar. And that’s on Imatinib? I was 11 years on that and reached .003 once and that was most likely with the help of omeprazole, proton pump med for stomach that seems to add a temporary assist. I finally switched meds and hoping it will go lower. You will reach CMR soon I am sure if not on Imatinib then on something else. Relax….