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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 9 hours ago | Replies (927)

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@dcuste

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.

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Replies to "This is the first time I have seen anything about 1q21. Now you know your 1q21..."

The 1q21 gain is just more info that I try to compartmentalize and not stress over. It would be nice if the curcumin was chocolate flavored. I am still asymptomatic although my kidneys might be getting slapped around a bit by the kappa proteins (GFR is decreasing a bit). Not at any stage where I could be in clinical trials yet. I mostly try to have fun, work out, do hobbies, and not stress over what might be lurking over the horizon. Having been an avid cyclist I already am familiar with lurking things coming at me. The 3.1 mg/day curcumin (lipid and peperine) aren't causing GI or other problems and I'll see with next week's bloodwork if it is having any effect on kappa or other results.