Hello everyone, my Name is Alessandro I am 31 years of age and live in Nottingham and was i was diagnosed with CML on the 3rd of august this year. I am taking nilotinib and have just had my first PCR test results back and it says BCR-ABL/ABL ratio (%) 5.248 im a little confused is this 5.248% compared to when i was diagnosed or just 5% of my blood in general? At diagnosis my spleen was big and was near my belly button and my WBC was 150, that we went down to normal in a few weeks.... it was just my platelets that played up a bit, they went down to 15 after a few weeks on the meds but since a 2 week break 2 months ago they have been stable at a normal level ever since (183 yesterday) and my spleen was back to normal about one month ago. My doctor seemed to be happy with the result but my brain always seems to freeze when i see her so i dont seem to ask the questions that enter in my head almost immediately after seeing her. I'm just looking for a better understanding and maybe a little reassurance as i cant help worrying on some occasions even if day to day i try and stay positive especially for my 3 year old boy who i fully intend to see getting older at least to the age where he is embarrassed to be seen with me :)
thanks already for the feed back i will look forward to it
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A bit of help with my PCR results after 3 months
Welcome Alessandro,
Your PCR result is excellent and has reduced in line with current guidelines for an optimal response= your PH+ cells would be measured at 100% at diagnosis using the IRIS baseline. You are now at 5.248% which is well within the target of below 10% bcr/abl by 3months.
Tomorrow I will publish a Summary of the UK CML Patient Seminar which will explain this further.
meanwhile.... enjoy the fact that you have responded very well to therapy.
very best wishes,
Sandy