@jdm02

Ah, yes . . . MGUS, MGUS, MGUS.

For years, I've dealt with this goofy thing that I was told will ALWAYS be in my blood. At last check, in November, 2024 . . . my M-Spike was .07. So, sounds like we're in the same proverbial boat with this stupid stuff.

Years ago, it scared the you know what out of me . . . thus, the reason I sought an opinion from the expert MM guy at the NIH. A friend I met on-line (never, unfortunately, in person) told me about an MGUS study that this doc was doing out East for folks who had MGUS, yet no diagnosis of multiple myeloma. She was in the same study and suggested I write to him. So, I did because my mother died of it. I (obviously) was "concerned" and didn't know what it meant. PLUS, I was having a LOT of extreme bone pain at the time. They accepted me in the study and paid for my trip out there and for our hotel stay. I had had a bone marrow biopsy here, where we live, but they told me that my "numbers" were all too low to be causing me all the pain. I went home in tears, not sure what to do at that point. That's when I found out about the study. That NIH doctor told me, also, that all my numbers were too low to be causing all the pain. Did you know you can have smoldering MM, with low numbers and that one day things could be diagnosed with a bone marrow biopsy if those numbers were low? A bone marrow biopsy isn't as bad as you may think. It's pretty much the only way to really diagnose MM.

As part of the study he did a PET scan, blood work and a bone marrow biopsy of his own, which showed an uptick of plasma cells in my marrow . . . sooooo, he wanted me to come out East in 6 months. He repeated the scans and gave me his opinion that he didn't think my numbers would ever really lead to active MM; however, he said that I should return home and ask for yearly infusions of a bisphonate drug that may alleviate the pain. I went home and asked the oncologist I was seeing to consider the bisphonate drug. He agreed and prescribed yearly infusions of "Reclast". I had, I think, 6 courses of it which reduced my pain to a tolerable level. As part of the treatment they gave me . . . they discovered that I have a significant amount of osteoarthritis (supposedly non-cancerous) cysts and lesions up and down my spine. THAT, they say is the reason for all the bone pain. YES, I have pain pretty much ALL the time and have a great deal of trouble sleeping.

Hey . . . if you have any more questions about my MGUS journey, since this is getting ridiculously long . . . private message me. I will share, with you, anything else you'd like to know.

Dawn