Does anyone else have MGUS?

If this helps, I wass diagnosed ten years ago and took it very seriously, My oncologist/hematologist, after taking dozens of tests, includingmy urine and a bone marrow biopsy, said I'll see St. Peter from something else, not MGUS.

I see him once a year (my doc, not St. Peter at the pearly gates).

Hello everyone

I am new to this group. I am in my late 40’s and just diagnosed with MGUS the past summer. Which was scary and devastating to myself and my family. I didn’t know anything about MGUS. The info I received from the Hematologist was very not helpful. The dr didn’t explain things well or give me information on what to look for concerning symptoms which was upsetting. I felt lost and not taking care of and my new MGUS diagnosis was not taking seriously. I have been suffering from pain all over for years but just kept suffering. I had testing for rheumatoid arthritis and recently found out that I have fibromyalgia and diabetic neuropathy. I am type 1 diabetic for years. It has been a journey that I am still learning. The recent diagnosis was found out by a blood test in rheumatology clinic for the second time but the second time is when I found out that I had MGUS. I also went to dr Google to check out more info on this. I had a referral to hematology clinic and had only blood work to confirm and the bone marrow biopsy but no full body CT scans due to insurance. So at this point I have not had a recent full body CT scan. Which is concerning to me but my hematologist would not push the full body CT scan with insurance even though insurance sent a letter explaining what they needed to approve the Full body Scan. My doctor just looked at all my other scans or X-rays for different times and areas that I had X-rays. What should I do at this point? I am in the process of getting another opinion from a different hematology clinic. Any advice or suggestions?

Donna, I will be following for information as well. I have my six month wait and see CT in May. So I am right behind you. (I’m terrified of the bone marrow biopsy. I’m hoping it doesn’t come to that. )I have an enlarged spleen so they’re monitoring that with contrast CT, which I have a pretty awful allergic reaction to the die the first time. Scary. I hope we both do well. We are fortunate to have good family and network of friends around us to Shepherd us through this.k

I was test by my Neurologist which I through was odd.
They also tested for M protein and light chain and lambda tests. So far my light chain was slightly elevated but my M protein was negitive. So far the doctor was not to worried.

Hello kayabbot! I have been diagnosed for over 3 years with mgus, initially biclonal (IgM lambda, IgG kappa, but also once IgG lambda). Now my latest tests show no identifiable monoclonal protein but I do have elevated Lambda (5.36 g/dl I think is the units).
I was given a BMB at that time and while it showed small percentage (1-4%) the FISH studies showed a Tp53 mutation and a gain of 1q which was terrifying. I went to 3 MM specialists who said those mutations were not significant because they were around 10% of the cells. I have been told repeatedly that it is doubtful that this will ever progress and I don't need to worry about it. I haven't had any other bmb but did have a full work up of complete pet/ct scan, mris and skeletal surveys.

I have finally let go of the extreme anxiety, yay! I wish I had never had the testing done as I continue to have no symptoms. I agree we should put it out of our minds and live as healthy as we can. I am 66 and hoping to live a lot longer.

@dave7 Welcome to Mayo Clinic Connect! How long ago was your diagnosis, and what has your medical team advised for "watch and wait"?
Ginger

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.

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

@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