Does anyone else have MGUS?

My husband's blood tests last week show a spike in monclonal protein and that means either myeloma or MGUS. I am losing my mind, completely distraught for him, myself and my children. We don't have a diagnosis yet but the fact that he also has anemia suggests myeloma, from my Dr. Google searches. Please tell me I am wrong. He's only in his 50s and our kids are still in their teens.

@karencan2025 First, welcome to Mayo Clinic Connect. Now, please do not do the Dr. Google search!!! It will take you down a rabbit hole and do nothing for your peace of mind.

What is your husband's doctor telling him? What additional testing is scheduled? It is important for you both to be listening to your doctor and the medical team.

For tonight, please sit down with a cup of tea, a few cookies, and pen with paper. Write out your feelings, questions, get it all out. Then do your best to have a quiet and relaxing evening. Can you do this?
Ginger

Hi Ginger,
That support is really helpful; thanks so much. He just had more CT scans and blood tests so the next step will be to meet with the cancer centre as they deal with the next steps. That doesn't mean he has been told it's myeloma, just that the specialists at the cancer centre will take over from his family doctor. We shall see. He has quite a lot of medical knowledge due to his profession but this is a new one. I am hoping it is MGUS, which would be a much more favourable outcome. It's the anemia that throws me as my understanding is that is not as common with MGUS.
I really appreciate being allowed into this community. Thank you so much.

@karencan2025 Yes, waiting to see what the cancer center has to say can be very anxiety provoking! But as you have said, until things are figured out there's no sense in getting to upset. Our minds sometimes want to go right to the worst case scenario. But I'll bet that no matter what the outcome is, you got this. There is a lot of information available not only here, listening to members' stories, but also sites like the International Myeloma Foundation myeloma.org

I will be most curious what everything points to after all the testing, and I hope you will come back and let us know.
Ginger

To follow up on my post 3 days ago. I am the 70-year-old that was diagnosed in October. In 2017 my sister was diagnosed with MGUS. She was also 70 years old but had also pulmonary arterial hypertension at the time. She ended up with Amyloidosis (AL) and acute kidney injury with chronic renal failure (caused by the Al). In Noivember 2023 to April 2024 she underwent Chemotherapy and was administered various cancer drugs such as Daratumumab cy BORD, Bortezomib, Cyclophosphamide, Dexamethasone, which were a combination of pills and shots in the abdomen. She fell into the 5% that had issues with MGUS. Our father had renal cancer and lived with one kidney for over 30 years. I am hoping I fall into the 95% that can live with MCUS.

MGUS the twists and turns and hopeful.
My MGUS journey (diagnosed Nov, 2024)has taken some interesting turns. The whole body scan, revealed masses on the adrenal glands and sigmoid colon. CT scan of adrenal glands determined benign mass BUT identified aneurysms with arterial dissections in the celiac artery, hepatic artery and splenic artery. Very rare. They thought it was due to a past trauma but I can’t remember anything specific. Repair at this time has more risk than potential benefit. So it’s another, watch it every 6 months for increased enlargement. My colonoscopy is scheduled this coming Thursday.
Last week my EMG confirmed peripheral neuropathy. MGUS related or B12 deficiency? A lab test this past January revealed the low B12 level and I have started B12 shots. Fingers crossed it helps the neuropathy. I know about the correlation of MGUS and neuropathy. Just wondering how many MGUS/neuropathy individuals also have low B12? Diabetes is also related to neuropathy. Does that also correlate to MGUS/neuropathy?
Now the HOPFUL and may have been presented before in this forum but I think it is something to keep an eye on. A study is looking at the potential of Metformin (diabetes agent) slowing the progression of high risk MGUS and SMM towards multiple myeloma. The study is completed and should be released this summer?
A new population study (this is an observational study in contrast to the Metformin study which is a randomized trial) just caught my attention regarding the GLP-1 diabetes agents slowing the progression of MGUS in diabetics.
“Association between glucagon-like peptide-1 receptor agonist use and progression of MGUS to multiple myeloma among patients with diabetes “
In short a 55% reduction in progression.
Would this same benefit be seen in prediabetics. I am one of those. Or even in MGUS individuals without diabetes?

@buckett This is an interesting thing to read. What does your medical team offer for their input on this?
Ginger

My own decision is to start a GLP-1 and I already have my primary care provider blessing on this. But let me be clear, I am not choosing to start the GLP-1 to slow MGUS progression. If I get that benefit, that’s an added benefit. It has more to do with my prediabetes number (A1C 6 from 5.8), struggling with weight 6’5”/260lbs, a big belly, and the neuropathy. Without those issues I would not start a GLP-1 to slow the progression of MGUS at my level,0.99 g/dl, IGg. It’s intriguing information but I prefer evidence based medicine with well done, randomized control trials. If the metformin study is positive, you can bet the GLP-1 companies will start their own trials. Another population study compared GLP-1 to metformin and insulin in type 2 diabetics. The GLP-1 was superior to insulin in reducing all hematologic cancers, and better than metformin in reducing myelodysplastic syndromes and myeloproliferative neoplasms. GLP-1 showed no difference in MGUS progression compared with metformin. BUT the GLP-1 and metformin may have anti proliferation benefits outside of glycemic control.
“ Hematologic cancers among patients with type 2 diabetes prescribed GLP-1receptor agonist” JAMA network
Again, I would not be starting a GLP-l or metformin solely on my level of MGUS, 0.99IGg. If I was high risk MGUS or SMM, I would be eagerly waiting the metformin data and have my provider treating my MGUS/SMM aware of it and the GLP-1 data. As a sidenote, if you’re on a GLP-1 or metformin, watch your B12 levels particularly if you have neuropathy.
Best wishes everyone!