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Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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thencea | @thencea | 20 hours ago
In reply to @kayabbott "I've had MGUS for 8 years. I had a BMB this summer and plasma level was..." + (show)
@kayabbott

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.

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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? 😉

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kayabbott | @kayabbott | 20 hours ago
In reply to @thencea "Thank you; this is helpful. I also have translocations but a quite low plasma level of..." + (show)
@thencea

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? 😉

Jump to this post

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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Mentor
Ginger, Volunteer Mentor | @gingerw | 9 hours ago
In reply to @buckett "I am a 66 year old male and newly introduced to the MGUS journey. Started with..." + (show)
@buckett

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.

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@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

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1 reply
dave7 | @dave7 | 9 hours ago
In reply to @gingerw "@buckett Welcome to Mayo Clinic Connect. It's quite the journey, as you say, to get the..." + (show)
@gingerw

@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

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I have a positive mgus diagnosis

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