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Hi, I just got my test results for the PCR and it was .004. Not good. All of my other tests have been not detected, I am very worried now, especially for my son and daughter. The doctor said it was only minimal and don't worry but that is very hard to do.

 

Hi thanks for your post. Please do not worry 0.04 is still extremely good response, and well under what all regard as he safe haven of 0.1 MMR. Small blips, and this one, can and do happen. To move from undetectable to low levels is common, and just as easily with retest could have been lower, or undetectable again. 

Thanks for your reply. It has happened before a couple of years ago and the next time it was undetectable again but I just worry that it is progressing. I have had this since 1997.

Thanks again.

Hi, Giles. That's almost PCRU. it's just a "noise" of the test. many labs have a sensibility of 0.0032. I'm fluctuating from PCRU to 4.3-4.5 logs for 2 years and that's fine. Many of us have the same "problem" try not to worry (easy to say). you'll be fine.

I saw on my blood test results that the glucose was 109 and the Mono% was 8.7. Both of them were marked high. Does that have anything to do with my last result of 0.004 on the PCR test?

Problaby not. sometimes our wbc reacts to some situations/infections and get a little high. about the glucose, maybe it's just an age issue, maybe you're not eating very well, maybe it's an tki related issue. many things. remember: 0.004% IS is almost the limit of detection of some labs. i remember i had 2 pcr tests within a 15 period - two different labs: the first one send me a pcru result and the second one a 0.005% result. And yes, i was worried, but it was my irrational part. my rational always says: "pcrs are not very reliable. don't worry. you're fine". Good Luck!

I just noticed the IS number was 0.0092 the one that came from the lab was 0.004 does that make a difference. I don't know the difference between the two. Thanks for all of your help. Sorry to keep asking all the questions just having a hard time.

Hi,

0.004% means four in one hundred thousand. 0.0092% means ninety-two in a million (nine and a bit in a hundred thousand). If one is IS and the other is not IS (international standard) it just means that one is somewhat more sensitive than the other - with your raw (0.004) score being less sensitive than IS. That would lead us to believe your lab is not as sensitive as IS, here the 2x (and a bit) conversion. That said, it's just one test so the conversion factor might well be different.

On any reporting standard, both are great results. Frankly, I'd be more concerned about results that are undetectable - I wouldn't trust the accuracy in that case. A good PCR test should assess about 1 in 100,000. I don't, in most cases, believe a 0.0000% result as evidence or disease eradication.

Here's my opinion: forget about "undetectable". It's nonsense in most cases (most labs). A really bad, poor quality lab can give you an "undetectable" result which might make you feel nice, but the reality is that the CML is still there in small quantities. Given that, you are best knowing what that is ... and four, or nine in one hundred thousand cells is tiny. That's a fantastic result! You're doing great.

David.

Hello,

I concur with what David has put down regarding the term "undetectable" to translate a PCR test result.

To me, the word "undetectable" has a close link with the word ""impossible" in my vocabulary. Mostly, because it sounded nominal and qualitative rather than a quantitative analysis to interpret PCR result. Thus, don't get too hung up by it in any way!

The important thing to remember is that as long as you did everything right within your willpowers in the management of your CML such as, TKI adherence, eating right, exercise proportionally and still enjoy all the best things in life with your loved ones, than forget about the few "0.00 something" difference in results. Also, until the bio-mechanical scientists have FINALLY invented a RTPCR testing technology to read with margin of error of absolute 0% and confidence interval of 100%, and/ or at least with greater sensitivity than the incumbent 0.0032% to analyze test sample, then it's not worth batting an eyelash over slight elevation in your current result. Which by the way is still a number to be proud of!

Furthermore worrying about it will only encourage the production of stress hormones which in turn upset all sorts of metabolic balances in your body. Mind you, there is a direct correlation between mental stress and increase in blood glucose level in the body which goes on to trigger off-target inflammations and set off diabetes mellitus, etc. Hence, whichever way you look at it, stress and worries only guarantee more damages to your present situation.

So, until your hematologist start to voice his or her concerns about your result, push it to the toxic pile (out of sight out of mind, literally) and continue to live your life well and positively until kingdom come!

Best Regards,
Ellie.

David, I just want to thank you for that very smart, kind, reassuring and helpful reply. After 9 months since diagnosis I am still constantly perplexed by it. Your statement clarifies a great deal. My very recent PCR was BCR/ABL of b3a2 Type: 0.16% International Scale Ratio: 0.368%. Doesn't seem like good enough progress to me but in light of your encouraging words I feel much better. It is indeed a marathon, not a sprint! Thank you.

Ellie a big thanks to you, too (please see my response to David; same to you).