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Morning all,

I wondered whether I could pick everyone's brains on what they think of my BCR results. I have been dx now for 2.5 years and in that time have peaked at 8.299 when I had to come off Glivec due to liver problems in 2008 and only gone as low as 1.452 in Nov of last year after being on Dasatinib for nearly a year. My latest test results has gone back up to 1.945. All tests done at Kings or sent to Kings and my consultant seems happy but I just want that elusive 0.etc. Am I putting too much emphasis on that or should I be happy with the results yo yo ing a bit?

Any help/ advice gratefully received.

K

Hi Karena, I understand why you are seeking zero's. As far as 1.945 and 1.452 are concerned there is really very little difference between the results. More the issue is that you have not reached CCR and seem to stuck - at least for now. 

It is worth remembering that it does take some people longer than others to get to CCR ... less than 0.1 and pref. 0.0 and/or lower.

Have a talk with your doctor again- even though he is quite happy the important one to be happy is you. If he thinks from your general trend of pcr results are basically going downward (remember it is the trend that counts not one individual result) then it might be that you are a slow responder. Dasatinib has certainly got you lower than imatinib. So it might need more patience on your part. However if the next one is still at 1.9 or 1.4 then maybe you should start thinking of changing drugs.

I hope this is helpful

Sandy

Are you on 100mg ?it could be time to go to 140mg to get you over the last hurdle?

Hi Sandy

That is the weird thing - he tells me I have reached CCR even though the results are not 0. etc and that is what confused me (and still is!)

K

Hi Karena

The difference could be explained by the difference between cytogenic testing and PCR, which look at slightly different things though they are comparable in most cases.  It's a bit complicated.

CCR is generally determined by cytogenic testing on 20 cells from your bone marrow.  It looks for the existence of the Philadelphia chromosome in 20 cells. If all of those 20 are"negative", you are in CCR.  I think that's where you are and if that's so, maintain that and that's good. 

Cytogenics is less sensitive than PCR. Cytogenics looks only at 20 cells. PCR doesn't look at cells but at the presence in your blood or marrpw of the aberrant protein encoded by BCR/ABL (which is the "bad" gene created by the Philadelphia chromosome - and it's the protein that ultimately causes the problem).  PCR can look for that protein in a very sensitive way - equivalent to many thousands of cells - even millions.  Generally, I believe a PCR of below 1% equates to CCR - but it's not 100% of the time so I understand. My guess therefore is, you are in CCR because the cytogenics say so.

That's good. I totally understand your desire to get the PCR below 1% - and am sure your doctor wants that too. It can take a long time for some people. I would discuss this with your haematologist next time your see him/her.

All the best

Richard