Hi, I’m new to this. I was diagnosed with high risk myeloma (I have 17p deletion) in April 2016 at 45 years old, I had initial induction chemo (Lenolidamide and dex) which was ok, other than dex made me hyper!. During this treatment I was told I’d need a transplant. I went to Oxford for this (BMT team are amazing) and was told I needed to autogolous SCT which they said I’d have in November 2016. Before this transplant I was then told that due to the high risk nature of my myeloma I’d need an allogenic transplant in March 2017 as they liklehood was that the myeloma would come back quickly. i had the autologous transplant which was ok really (worst thing for me was having pic line put in) and then in March 2017 I had the allogenic (tough being in hospital for 4 weeks but was ok really). I truly believed that I had been cured, as had no GvH, however last month (18 month post allo) during a regular BMT clinic checkup I told them I had pain in my rib which they x-ray’d and then did PET-CT scan on and my light chains have also gone up. I’m still awaiting results of bone marrow biospy but have been told I’l likely to start on lenolidamide next week for 3-6 months and then have a number of DLI’'s.
Consultant is positive that treatment plan works well even after myeloma has returned after allo, has anybody been through similar? Would like to chat if so. many thanks