You are here

BCR ABL Questions

Categories:

Hello All, I have some questions and concerns regarding my BCR ABL "First Results". Diagnosed September 29th. My hemo's nurse called today and told me my BCR ABL was 9.54%. She said the doc wasn't worried about that number and that will be the baseline. They released the test results to me so I looked through them, contrary to what the nurse said it stated that my BCR ABL on September 30th was 7.67%. I also checked to make sure that this was the same value and not major vs minor. Interestingly enough it also showed my minor and it went from .29 to .014, not sure if that matters.

This doesn't make since to me. I checked the results over and over. I have seen many people state that their results in the beginning where 100% or close to it.

Should I just trust the doc despite the test stating what it did? Should I call him and point out what I saw?

Why are the doing PCR test when I have only taken 400 imatinib for 48 days?

Can the first result be different due to some test differences?

I am really frustrated at this point. I want to smack the doc upside the head and ask him to listen more. Any advice is helpful.

Thank You Shawn J

Hi Shawn,

A PCR result (PCR test measures BCR-Abl) of 9.54% is a pretty low result for the first one, but absolutely not unheard of. 

However - and this can be the confusing bit - it doesn’t matter what your PCR is at diagnosis, we all “pretend” we were at 100% at diagnosis for the sake of benchmarks, treatment guidelines, and how we measure overall response. Confusingly, it’s also quite possible to be over 100% at diagnosis (I was over 300%). So given you are hovering around 10% we would say you have had a “1 log” drop from 100%. A 2-log drop would be 1%, and a 3 log drop is to 0.1% which is called MMR or “MR3” (the 3 is the number of logs).

If you want to learn more about PCR testing, read our booklet here: Quantitative Reverse Transcription Polymerase Chain Reaction: A primer for patients

I’m not quite sure what you mean by major vs. minor. But it looks like the 9.54% and 7.67% tests were one day apart - is that right? That is well within expected margins of error. If you run two PCR tests, on the exact same machine type on the same blood sample at the same time you will still get a slightly different result between them. PCR really comes into its own at very low levels - under 1%. 

PCR testing at diagnosis, and certainly at 48 days post diagnosis is exactly what you would expect. You would expect FISH testing (which is another way of testing for CML, which is not as good as PCR at low levels) int he early days as well, but protocols are different in different places. Some hospitals will want bone marrow tests, others (more progressive) will not unless it’s really warranted.

David.

Hi Shawn,

I wondered when I’d see another very low presenting PCR result. I was diagnosed at baseline 13 - 20%. It was so low the test was performed twice to rule out errors. It is unusual to have such a low presenting PCR like you and me. But like your doc my doc too wasn’t concerned at all. I’ve also seen people diagnosed with BCR presentation of 300% or greater. I to this day still don’t understand this baseline or what this really represents and as you say most are diagnosed around the 100% give or take.

I was tested for p190 breakpoint as this is common at low levels of presenting PCR. Mine came back negative and I have regular p210.

At diagnosis I was high risk CML as I had a enormous spleen and weight loss. Borderline anaemic. I was started on high dose Hydrox and the theory is it kicked a lot of CML in the butt!

I’ve been on Nilotinib for 18 months and just approaching MMR at 0.118%.

The take away from all this is to trust the doctors. I understand the paranoia and frustration but if they’re not worried nor should you be. It’s hard I know and my low value had/has me at times suspicious. But as others have pointed out PCR means nothing until you reach CCYR less than 1% by proxy PCR.

I hope you get clarity and maybe they should test your for p190 for piece of mind.

Lets us know how you get on I’d be especially interested why yours is low like mine.

Alex

David and Alex

Thanks for the replies.

David what I meant by minor was the P190 that alex spoke about. The results are above for that one.

I am frustrated mostly by the lack of knowledge by the doctor and the nurse. I am at a big hospital cancer institute so they cannot dedicate much time to me on an individual basis.

I am glad I have this site it helps a lot.

Thanks
Shawn J

No worries Shawn,

Yes that must be frustrating. This site is invaluable isn’t it. The thing to take away is don’t worry about your low presentation as we’ve discussed. Think of that as your 100%. It’s taken me 18 months to drop from that 13% to 0.1118% so it’s all relative. I hit the <10% easy and the <1%. It’s been much slower from 0.7% @ 6 months to 0.118% @ 18 months.

Maybe see if you can see another doctor if it gets to the point where they can’t answer your questions. Surely that’s your right.

All the best mate

Alex