Does anyone else have MGUS?

I've had MGUS for 8 years. I had a BMB this summer and plasma level was 15% and 1q21 gain (chromosome 1, one replication at location 21) which should have me in the SMM range, but doctor says still MGUS. My kappa is almost 300 and kappa/lambda ~28. I'm 70 and still asymptomatic. The 1q21 gain is associated with somewhat higher chance of it turning to MM and less responsive to treatment, but about 40% of people that have MM have 1q21 gain or amplification (tripled rather than doubled). I try to spend my time doing fun stuff, hobbies, biking, cooking, and not stressing over what might be, because MGUS is a waiting game. Even if someone has SMM it may not morph to MM, and if it does then the avg. prognosis is still for years of biking. ResearchGate has a lot of peer reviewed papers on MGUS, SMM, and MM research.

Thank you; this is helpful. I also have translocations but a quite low plasma level of 1.6 (are we comparing on the same scale?). Trying to get all my climbing done sooner rather than later, just in case! Adams and Rainer this summer, anyone? 😉

I am a 66 year old male and newly introduced to the MGUS journey. Started with an echocardiogram showing an asymmetrical, moderately hypertrophic heart septal wall. My oral history report with providers at the University of Utah, HCM clinic triggered reasons to test for amyloid. Labs revealed monoclonal spike 0.99g/dl, IgG type lambda, but my free light chain ratio normal, 24 hour urine was negative.
Heart work up included PYP scan which was negative and MRI which also showed no clear signals of amyloid. My heart wall is a little thicker than normal 1.2cm but cardiologist thinks that is in a normal range for my size 6’5”/250lbs. Conclusion on heart; no reason at this time for heart biopsy.
My visit with amyloid/multiple myeloma specialist at the Huntsman Cancer Center in Salt Lake City, has me trending towards a MGUS diagnosis but next week is bone marrow biopsy, whole body bone scan and abdominal biopsy.

@buckett Welcome to Mayo Clinic Connect. It's quite the journey, as you say, to get the correct diagnosis.

Please come back and let us know how the biopsies and scan go, will you please?
Ginger

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.

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.

I have a positive mgus diagnosis

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.