Hello, I would really appreciate some help from this forums experts on my worrying position please.
I am 40 and was diagnosed with CML last August with WBC 300, spleen 30cm, had a BMA and they were unable to get a full sample after 9 attempts (no liquid).
Started in Imatinib 400mg and had very few side effects and felt completely normal… had a few interim tests and was all looking ok ish… then 6 months later it was flagged that my BCR ABL had never dropped below 18%... so it was decided to check for mutations (none found) and I was put on to Dasatinib 100mg.
I have felt terrible for the whole time I have been on the Dasatinib and feel it has just got worse to the point I was weak, tired. Low mood and couldn’t concentrate. My BCR ABL was 16% in July, but when I was tested 3 months again in September I had jumped to BCR ABL 29% /platelets 39/ HB 100/ Neutrophil 1.63/ WBC4.4!!! (However due to the delay in getting the results back the 7th Sept testing wasn’t reported back to the hospital until 5 weeks later!!)
They stopped my Dasatinib a week ago now and I cant explain how much better I feel… and hoping this is a good sign? They have also re run my bloods this week, doing mutation analysis and having another BMA on Friday.
I am so concerned now, on most things I read on here everyone is 0.0 something and they are still worrying, but I have never even got into single figures…
I would really appreciate some knowledgeable options from the site experts if you would be so kind please. Also is there anything I need to be asking or pushing for in my appointment tomorrow etc… what is next for me?