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BCR results

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Hi,

I am from Dublin, Ireland, and I was diagnosed in February of this year, and I'm attending Beaumont Hospital in the CKB unit, in the beginning it was weekly appointments and now I go monthly for basic bloods and an update. So far I've been on Imatinib 400mg, my wbc is back within range, a little low sometimes but the docs are happy with it.   

I had a bone marrow biopsy in February to confirm I had CML and then again in May to see how the meds were working. When I went for the results the docs said it wasn't a good sample so they had to do another (so 3 in total !!). Having received the results it seems the meds are only partially working, so had more blood tests and getting the results this week. The doctor said it should only mean that I have to change to another drug, which is a bit annoying as I didn't have bad side effects just the normal exhaustion, and having to change what I eat as it caused acid indigestion.

On Facebook support groups people are mentioning their BCR results but I have never received them from the hospital all I get is the blood works, is this normal for Ireland or should they be able to provide it to me?

Thanks,

Clare. 

Hi Clare. The PCR test for CML shows the proportion of the BCR-ABL gene present in a blood sample. Some more explanation on this site is here

It is the normal way to measure the progress of CML treatment in most countries. I can't remember seeing anyone from Ireland talking about it on this forum but it would be a surprise if it is not common practice there.

In the Patient Info section of this site there are some templates for questions to ask your doctors. Have a look at these and if possible take them and someone else to take notes when you next see the doctor. Please let us know how you get on.

Good luck.

Hi Clare, 

It's common not to have a PCR test (which tests for the existence of BCR-Abl, the fusion protein that drives CML) until 3 months after diagnosis. However, that means you ought to have had one done in May.

My father used to work in the blood laboratory in Beaumont, before he retired a couple of years ago. CML wasn't in his direct line of work but I do know that they do their own PCR tests on-premises at Beaumont.

You should give one of the nurses a call and ask if they can give you the PCR test result, and if there isn't one available you should ask why not and when you will have one done. You should be getting them done every 3 months at a minimum for the moment.

David.

Hi,

I asked about my PCR tests and apparently I've had 3. The results of the 1st one in February was 82%, then May was 22% and this months went down to 2.4%, and I still don't know if this is ok. Should I have a lower result after 6 months?

Unfortunately I was seen by a new rotation doctor whom I had to ask all the questions rather than her talking to me. She didn't have a clue so I asked if I was to change medication as the previous doctor had said if the results weren't good he would advise a change but she looked at my file and said she wasn't sure! I'm back in September for normal tests so hopefully I'll get a consultant, I can't ask to see the consultant it's just who ever is free when your results come back is the person who talks to you (Rant over).

Thanks for the previous responses.

Clare. 

I would say as long as you are trending in the right direction you are still good.  Mine looked like the following:

64%, 23% (6 months), 1.8% (9 months), 12 month at the end of this month.  The six month result was scary for me and really needed to get under 10% at 9 months.  I prayed and waited.  I would not worry at this point but I would say that we both need to get under 1% at our next checkup.  22 to 2.4 is encouraging.  

Hi Clare, 

One set of targets which is often discussed as a good indicator is reaching 10% by 3 months. Then 1% at 6 months, and 0.1% by 12 months. These would be considered "optimal" responses. Many, many of us (me included) don't achieve those figures but do absolutely grand. You are very close to those numbers though.

The main thing is that your results are reducing, and reducing on a pretty steep curve, which is a great sign.

One thing I would ask at your next appointment is if your PCR test results are reported on the International Scale. Our booklet about PCR tests explains why this is important (section 4, page 15). For example, my hospital has a "IS conversion factor" of 0.5, so I need to half all my results to put them on a scale I can compare them to.

David.