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Disappointing PCR result!

I have just had a third pcr result... and had been hoping for a better one.

Perhaps others can encourage me that this is normal...

Dx 11/09 and pcr 100%

January result was 47.6% and five months later it is only down to 42.5% That means a lot of leukemia cells still in the blood.

Can anyone help!

Beth

Dear Beth... this might mean you need a change in TKI or dose rise to 600mg imatinib? some people do stall and then regain the downward trend but I can understand your concerns. I would suggest a referral for second opinion to HH or Kings... where are your based?

Sandy 

I am being treated by St Peter's and Ashford Hospital trust in Surrey.

As Sandy mentions it would be good to get a referral to Hammersmith or Kings. My personal experience is that the level of expertise is so good compared to local hematology Depts.  I managed to get a referral to Kings.  My own PCR stalled on 400mgs of Imatinib and a plasma test to check on levels of the drug in the bloodstream found that the level was far too low, and I've been doing much better on 600mgs of imatinib. Either of these London hospitals could also advise on an alternative TKI and see if this would lead to a better response

Regards

Andy

Hi Beth,

From your results it appears that you have only been tested using the PCR test. This test not very accurate until you have achieved CCR. Since you are not there yet, you might suggest that they do FISH or BMB testing yntil you reach CCR. From your two results you've posted we can't even be sure that you had a response to the meds.

Zavie

Thank you for all your comments - they are really helpful and give me courage to go forward positively.