Ultra-high-risk MM post-transplant update

Hi All,

I wanted to let people know, in case they are searching for support with ultra high risk multiple myeloma (which I have, three mutations), about how my case is going so far.

I had my ASCT in mid-February at Johns Hopkins. It all went very well, I didn't have a hard time with symptoms and side effects and I was only there for 3 weeks, before being sent home with fabulous blood counts. I have continued to get stronger steadily and I'm feeling perfectly normal except for the fact that my old strength hasn't yet returned.

I had all the re-staging tests done, and I didn't look at the results (that's just how I deal with the fear and stress). I had my follow-up appointment at Hopkins on Monday, with my brilliant but scary PhD/MD oncologist. He told me that my results are the best possible - negative MRD, complete remission. He started by showing me his computer screen, which he had enlarged my biopsy results, showing that I have 0 cancer cells in a sample of almost 3 million cells.

He did share that he was not expecting to see those results, and that he was very surprised. My husband and I were obviously very surprised! He has ordered for me to start maintenance chemo in 2 weeks, which will be Pomalyst with Kyprolis/isatuximab every two weeks. He told me he had to extrapolate from many trials, etc to design the maintenance therapy since he wasn't seeing too many cases like mine, and he wants to go as aggressive as possible to keep me in remission.

I feel very very lucky to have done well with the treatments so far. Of course I'm lucky to get care at Hopkins. The way I see it, my body got me into this mess, and it sure as hell better do its best for me right now.

All the best,
Meg