Hi
I would very much appreciate your help in understanding some information in a letter my husband has recently received from his consultant.
The letter refers to his recent cytogenetics as: ‘loss at 1q21 and 17p13’ and we assume these results relate to his most recent bone marrow biopsy.
For background, he was first diagnosed in April 2013, had an ASCT in December 2013, achieved complete remission following Velcade consolidation, and has since been on watch and wait since his paraprotein reappeared in May 2018. Currently he’s on DvD and been told to expect a second SCT next year. At our previous consult, I had asked about allogeneic transplants (just because I’d read about them and wanted to understand the risks as compared with a standard SCT) and wanted a referral to at least have the conversation, and it was agreed that we would have a referral but that in our consultant’s view the risks outweighed the benefits given that he was what they called ‘low-risk genetics’. We haven’t had a consult since his recent bone marrow biopsy, so these results being referred to as high risk cytogenetics has come as a huge shock, particularly as reading between the lines his consultant now seems more open to an allogeneic transplant.
My question is how bad are these findings, in terms of what they mean for the success of his current treatment, and likely second remission? Previously we were told that the fact he achieved complete remission before and stayed there so long indicated that he was likely to do similarly well again, but I’m now concerned that if these findings indicate the disease has changed, his prognosis may be different. Basically I’m out of my mind with worry, and I’ve logged our questions and concerns with his medical team but it always takes them an age to get back.
I’d really appreciate advice, especially experiences from anyone whose cytogenetics are high risk, as until our team get back to us there’s no one I can talk to and at the moment I’m imaging the very worst.
Thank you so much x
