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Always run down with MGUS

Blood Cancers & Disorders | Last Active: May 29 10:06pm | Replies (54)

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@gingerw

@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

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Replies to "@mitten Good afternoon, and welcome to Mayo Clinic Connect! I'm glad you found us, and look..."

Hi Ginger,
Wow, SMM morphed into MM in less than a year. Thank you for your feedback and I have decided to continue 3 months. I do visits 1-2 times to Dana Farber in Boston, MA and see my local every 3 months. My cell % in my bone marrow biopsy is approaching 10% so I am still in MGUS stage. Thank you for sharing - this is helpful. No other questions I can think about at this time. I will be praying for you.
Mitten