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← Return to Always run down with MGUS
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Blood Cancers & Disorders | Last Active: May 29 10:06pm | Replies (54)
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Hi Ginger,
Sorry to hear about the progression to SMM. I was curious do they consider you for any oral treatments or something to slow down progression? I'm still in the MGUS stage diagnosed in 5/2020. I see my oncologists every quarter or 3 months. My FLC ratio went up to 2.22 my diagnosis is MGUS with lambda subtype. MY IGG is 2200 down from 2300 and shows M -spike. I would love to just go every 6 months, but oncologist is not recommending that at this time. I thought after 1yr diagnosis they evaluate every 6-12 months? Do you know anything about that?
Mitten
Replies to "Hi Ginger, Sorry to hear about the progression to SMM. I was curious do they consider..."
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@mitten Good afternoon, and welcome to Mayo Clinic Connect! I'm glad you found us, and look forward to hearing your experiences.
Follow your oncologist's guidelines, is my suggestion. While it may be inconvenient for you, you want to be sure your case is being followed. If you live a distance away, speak with your team about telehealth, and if that would be okay in your case, perhaps every other time?
I live 2 hours away from my oncologist. While every three months was not a big deal, I am now doing monthly visits. My SMM morphed into multiple myeloma in less than a year after the Nov 2019 diagnosis. I guess I am an overachiever, as that happens in about 10% of the cases! In August 2021 I started a low-dose chemo plan, meant to reduce my IgM kappa slowly, since I also have kidney disease not related to this multiple myeloma.
There is a protocol that your oncologist will prefer to follow. Trust him/her if you have until this point. If you can do a telehealth every other time, and have the blood work done, do that if they will agree. Any other questions for me?
Ginger