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Fast Metabolism

Afternoon!

As usual, I managed to find myself walking away from docs in a confused state. My PCR has been "stubborn" since August last year where they gave me a 1.5% PCR reading and told me I'd reached CCR. Great news back then! But now I've had 3 other PCR tests and they've all become stuck at around 2.5%.

I had a mutations test done in December to see if this was affecting the results but have just been told I am "Mutation Free". I've now been bumped up to 800mg. My doctor said I'm the very first case he's dealt with, where the PCR falls but then gets stuck, whilst not having any mutations. He feels I may metabolise the drug way too fast and that's affecting the results - probably not high enough reading of Gleevec in the blood stream...

Anyone else had any issue like this?

Cheers! MJS

susan dickerson
Hi would there be a different test done if your pcr level qoes up from being a low level anyone know what next sue

Hi Matt,

I don't know how many CMLers your onc follows....but I would say there are many with a pcr that gets stuck, or just bounces a bit up and down.

Have you actually had a bone marrow biopsy that was 0/0 ph+? Sometimes the higher dose of Gleevec will give you a better response, over time. Having a mutation does not usually result in someone getting stuck at a certain pcr.....there is usually a very clear sign of relapse, like significantly increasing pcr, or incrasing ph+ (on FISH or bmb). It does not sound like your onc has that much experience with patients on Gleevec? ever asked him how many CML patients he is following??? A decreased sensitivity to the drug does not indicate a mutation in itself....it is just a decreased sensitivity.

Hope this helps your understanding.
Nancy C.
from the US, Dr. Druker's patient x 7 years

Also meant to add, that there is one place in the US that you can actually measure the blood levels of Gleevec...this has been a trade secret of Novartis. I read recently that this is to become available, and I remember them saying in Europe as well. So, for people who have too many side effects....or who are not getting a good response, they can see what the actual blood level of the drug is.

Nancy C.

Hi Matt,
they've been measuring Glivec concentrations in blood for quite sometime now here in France. Maybe it's also possible in the UK?
I believe you're treated in Scotland? Dr Holyoakes in Glasgow is very friendly with my Dr, maybe they could sort something out?My Dr's told me a few times about other patients who weren't responding as well as expected & who were found to eliminate Glivec too quickly. There are also other patients who are too sensitive to Glivec & for whom lower doses work perfectly.
Do you take any other medications? My Dr once had a patient who wasn't responding to Glivec & they were going to change him to another drug, they did the drug efflux test on him & realised it was due to the other medications he was taking,
hope this helps Barbara
PS as you say yourself, you're quite tall & well built, maybe you just need a higher dose; I've never understood how someone who weighs 50KG & someone twice that weight need the same amount of Glivec.

Hi all

I think I have been reading about this test on some other boards. If its the same one, and it sounds like it is cos it measures the concentration of glivec in the blood, it is called a blood serum or PK test. Apparently it's not universally available yet.

Hope this helps

Janet

Thanks for the response...

My doctor says he sees quite a few CMLers on Gleevec in Glasgow and before he changes anything (doses, medication, etc) he is always in contact with Professor Hollioake about my next steps.

He had told me there is a test that will soon be available to measure the level of Gleevec in the blood stream - he heard it at the CML conference in Florida last December and thought of my "siuation".

I guess my main concern was that I'd had a BMB and FISH test done and they both came back negative, my PCR is stuck and I'm now on 800mg from 600mg. I agree that the size of the patient will affect the results...

My next PCR is 2 weeks away (after 4 weeks at 800mg), so I'll let you know if there's a change...

Thanks! MJS