Hi everyone
So this last week has been a crazy ride for me. I have been on dasatinib since 4/12/15 with a reasonable, if not great response. After 18 months my BCR-Abl levels are at 0.16% - not yet MMR, but moving in the right direction with the hope of getting lower by the next appointment. My doctor has, sensibly in my opinion, not panicked and has decided to keep me on dasatinib as the levels keep dropping every time, albeit slowly. However, I have a completely different problem now in that I have two rapidly growing lymph nodes in my neck - one at the base of my skull and one lower down my neck on the neck muscle. This is concerning because it can be a symptom of lymphoma, another cancer that has mestasised to lymph nodes or (far worse) an extramedullary blast crisis of CML, which apparently can happen even if there is no sign of CML progressing in the blood or marrow.
The doctor ordered an immediate ultrasound and, when the nodes looked suspicious, she arranged for a fine needle aspiration of the neck lumps on the same day. Here in South Africa we are very fortunate that these things can happen so fast and it's not a long time waiting for appointments. One week later and the results are in - all negative for everything - but to be on the safe side I have to have both of these lumps removed by excisional surgery tomorrow, just so that they can exclude the horrible conditions listed above.
My question is simply whether anyone has had this progressive lymph node enlargement before when treated on dasatinib? I found an article in the Blood journal that reports 9 patients in France who had this very same issue on dasatinib, with a median occurrence 20 months after the start of treatment (which is about the time I've been on it). Dasatinib was discontinued in all these patients and their nodes reduced in size within a month. So I'm wondering whether the excision is truly necessary!
Thanks in advance and good luck to everyone.
Martin