Thank you for posting this. I was dx 5 yrs ago w/ diffuse systemic scleroderma and 3 summers ago MM but I was told it is morphea state. Last month doing a follow up w/ the hematologist my labs showed my IGg was dropping. This podcast was very helpful.
Thank you for this. I just had a BMB and I’m concerned my SMM is progressing because of the bone pain I can’t get rid of. I’m worried they’re going to wait. I’m 37, so I’m not in my 60’s and I’ve had MGUS since 19. I have just over 10% PC and just over all very worried.
I totally understand. I’m right at the border between smoldering and active, but I’ve got 2 lytic lesions in my back that have had differing results on imaging. It’s maddening. I need to get them biopsied to find out exactly what’s going on, but I find myself reluctant to do so. I had a horrible experience with 2 bone marrow biopsies, one a few months ago and one I had years ago. I’m a Hodgkin’s lymphoma survivor of 20+ years. I think that’s why this is freaking me out so much. It was my worst nightmare to have cancer again. Watching and waiting to develop worse symptoms/organ damage seems crazy to me, though I understand why it’s done. Mentally it’s so difficult.
i truly feel for you. im the same age, 15% PC. my IgG numbers seem to be doubling every blood draw. currently worried at SMM IgG Kappa… and the BMBs are never easy. im sorry you are diagnosed with this too.
I have smoldering myeloma. It was at 10% when I had Isotuxinab for 9 months in a study back in 2017-2018. It dropped from 1.4 to 1.0 during the study and then kept on dropping to 0.82. Today in 2024 it's at 0,86. I'm guessing my immune system has learned to see and kill the paraprotein. I'm wonder though how long it will last??
