I was diagnosed with CML in December 2016 and was immediately prescribed Imatinib (400mg per day). I have just received my first molecular test result and following my research of CML I was obviously hopefully of a BCR-ABL result of <10. I have managed the treatment well coping with a range of mild side effects and in fact I generally feel much better than before diagnosis. Therefore, I was quite disappointed to receive my first result of 24.3. I received my result by telephone and have an appointment to visit my consultant next Monday, but hoped that someone could offer advice as to whether I should be concerned and if I should expect a change in my treatment. I look forward to any replies.
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Hi Daphne, sorry to hear your numbers are not as low as recommended, however the first thing to find out is is this 24% raw number, or is it on the International Scale. For example the Hammersmith in the UK has a conversion factor of 0.3 there for this would be under 10%, however Birmingham QE 1.1 so it would be higher, and so the conversation factor is key if the number is not IS.
Also, I personally was 35% at 3 month on Imatinib, however my numbers fell steadily over time, although always just behind the old guidelines, which were more generous than now, so in effect I was much slower. However my numbers feel and now I am at MR4 and have been steady for some years on Imatinib.
Should you change drug, the answer from the guidelines would be yes, subject to the above IS issue. However I am proof that some are just slower.
Thank you Nigel for your reply. Following your information regarding the conversion rate and some more research this afternoon I feel confident that I now have the questions that I need to ask my consultant next week. Everything is so complex and obviously very new to me that I wasn't really aware of the need to standardise results. I have found the pdf booklet on this forum 'A Primer for Patients: QRT-PCR very informative and helpful - I feel quite reassured and more confident about my next visit.