Hi
I was diagnosed with mm in February 2016, which came as a huge shock. After 4 rounds of CTD to which I achieved a VGPR I went on to have an autologous SCT in June 2016. The process nearly killed me as I suffered a brain haemorrhage and lost the sight in my left eye. The day 100 bm showed I was MRD-ve (yay) and my bloods showed sCR (yay again!). Things could not be any better until… December. I developed a pp of 6.6. I have light chain myeloma so the only protein I had was absence Jones. My pp showed several intact immunoglobulins ie IgG kappa, IgG lambda, IgM kappa and IgA kappa. I was told that I had relapsed and because it was 6 short months after SCT I had aggressive disease. The plan was to commence induction chemo again and be put forward for an allogeneic transplant. I was shocked. It was worse than being diagnosed and I felt it had all been for nothing. I trawled the internet looking for answers and came across an article regarding secondary mgus. This sounded very much like what I was experiencing (a new isotope different from that at diagnosis) (I had lambda flc disease). I asked the consultant if this could be secondary mgus, recapitulation of the immune system and was promptly told no. I had many new clones and it required treatment. I had another bm which came back MRD-ve. Great! I went back to see the consultant and was told that I must have a plasmacytoma somewhere which is producing the pp. I asked for a PET scan and again asked could this be secondary mgus. No was the answer. I had the scan and awaited the results fearfully. Christmas and New Year celebrations had been a write off. I really did try for my family’s sake. At the end of January I received the result of the scan. I had no myelomatous hot spots. It was clean. I went back to hospital for f/u and was told I had secondary mgus.
I am really glad I did my research. I could have ended up back on chemo without needing it.
Anyone else experiencing/experienced secondary mgus. I would love to know.
Sue
