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Multiple Myeloma Discussion • February 8, 2023
Concerned About Treatment Delay for Kidneys
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I'm writing this because my newly-diagnosed husband (I'll call him "Deke") would never dream of doing such a thing. However, it's long been my role to be the gatherer of health information for the two of us, and I know we'd be better off if I add legitimate (I hope) info to the real-world experiences of those of you who are walking the same path. Having said all of that, I need to describe our/his situation. Deke, who turned 84 in December, has been monitored by an oncologist/hematologist every 6 months for MGUS since the summer of 2020. Much to our surprise and dismay, the doc announced at the last monitoring--or that's what we thought it was--visit that Deke now had active, "aggressive" multiple myeloma and would be treated with Revlimid and Velcade. That was November 23, 2022. Some of these events run together in my minds, but I think at that point he then had a bone marrow biopsy and a PET scan. When we went to the doc after the PET scan, we were expecting treatment to begin; but the doc said Deke had lost 30-40% of his kidney function and the doc "didn't want to start treatment too soon or two late." Deke has been an insulin dependent diabetic for 40ish years, and he had bypass surgery in 2019; however, he is very active physically and has had no symptoms of kidney disease, and no discernible symptoms from the myloma until the past week. But it's now been 2 months and 2 weeks since his diagnosis, and of course there's no way to know when his MGUS finally morphed into active myeloma prior to November 23 when he was beeing seen on an every 6 months basis. This just doesn't seem to square with what I have read about people's diagnoses and the start of treatment. Deke's doc is highly regarded by other doctors in our area, and, of course, I don't know any myeoma patients I can quiz about this process. I have one friend who was treated by this doc, and she speaks favorably of him--but of course, she didn't have myeloma. I've tried to limit myself to the salient facts, but I do apologize for the length of this post. Any comments that will encourage/inform/whatever will be appreciated.
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