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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 8 hours ago | Replies (927)

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@kayabbott

MGUS can have all sorts of associated translocations and mutations. I also have gains on chromosomes 5, 7, and 9, but those supposedly buffer the 1q21 gain. Most of my non-MGUS bloodwork, including plasma level are OK. A bit low on red blood cells but that might be celiac associated. Life is best lived sooner than later. Before I got covid 2 years ago, I biked ~6000 mi/year. After long covid I still get in ~3000 mi/year plus cross training. BTW, peripheral nephropathy was why I was tested for MGUS (associated with that and celiac). It hasn't worsened over the years, but my hobbies keep my extremities working. I do take about 3 gm/day of bioavailable curcumin; works on lab rats to decrease TNF (tumor necrosis factor) so who knows. Regular turmeric and curcumin are poorly absorbed by the GI tract and low concentration. Adding peperine (from black pepper) and lipids (fats) increases absorption.

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Replies to "MGUS can have all sorts of associated translocations and mutations. I also have gains on chromosomes..."

This is the first time I have seen anything about 1q21. Now you know your 1q21 issue, how does that information change anything you're doing?
I'm also taking 3 gm/day of the curcumin (C3 formulation). My hope is that the C3 somehow makes it more likely bioavailable than the run of the mill, garden variety curcumin and black pepper. I have no way to actually verify that.
I became interested in curcumin after seeing this study.... https://clinicaltrials.gov/study/NCT04731844?cond=MGUS&page=3&rank=26&tab=table
I met their requirement to participate and tried to get more info, but only found out that to be part of the study would require too much travel. My PET scan from 18 months ago didn't show bone lesions, but MRI results I just got, does mention a lesion and another bone issue called AVN. That was a complete surprise and don't believe the AVN is related to MGUS. So I guess I'm not a qualified participant anyway.
This trial is using 8g/day curcumin. Right now, I'm thinking of staying at 3 until I get my next 6 month blood work results. If my M protein is still doubling or if the trial results are promising, I may then bump it up to 8g/day.