1. < Blood Cancers & Disorders

Diagnosed: MGUS

Posted by sandramgus @sandramgus, Jul 29, 2024

Hello everyone, I was diagnosed with MGUS after a routine physical, and my doctor made it sound like it wasn't that serious, but my (favorite) aunt died of multiple myeloma about 20 years ago. So, while I'm glad we caught it early, I have so much to learn. I'm still grieving the death of my mother (from a year ago) and it's a bit much to get this diagnosis after watching her die (she died from ALS.) I'm hoping to find some resources and advice here. Thank you all!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

diana1958 | @diana1958 | 4 days ago
In reply to @gingerw "@diana1958 Welcome to Mayo Clinic Connect! It is almost always a surprise when we are handed..." + (show)
@gingerw

@diana1958 Welcome to Mayo Clinic Connect! It is almost always a surprise when we are handed an unexpected medical diagnosis. And certainly can be very anxiety-provoking as we come to terms with what we might be facing.

There are several conversations you might find useful to read through, regarding MGUS. Here is one: https://connect.mayoclinic.org/discussion/diagnosed-mgus/
When you go to the Blood Cancers support group, you can type in MGUS in the search bar and then choose a discussion to read.

MGUS rarely advances beyond just that, and the most common treatment is a "watch and wait" approach. It is a condition most commonly found when our medical team is looking for/reviewing something else entirely. Labwork is done routinely to monitor critical numbers. I'm glad your PCP is sending you to see a hematologist/oncologist, but please do not stress about it all. Be gentle on yourself.
Ginger

Jump to this post

Thank you Ginger.

REPLY
diana1958 | @diana1958 | 4 days ago
In reply to @msh466 "I have smoldering multiple myeloma. Not sure how long I had MGUS before it progressed. Found..." + (show)
@msh466

I have smoldering multiple myeloma. Not sure how long I had MGUS before it progressed. Found totally by accident. M Protein is 2.0 and 15% plasma cells in bone marrow. Many do not progress past MGUS. This is a condition they will have the rest of their lives. Get tested often. Follow ups often and wait and see what develops if anything. No symptoms or illness with MGUS. So catching it with blood tests is usually by random. I too was taken aback seeing Hemonc doctor. Felt overwhelmed like this is it. But it’s been stable now for over a year. No progression or lesions and calcium normal. Abnormalities in M Proteins. Super high IgA. But they haven’t moved much. Blood work is due in May. Always a tense time waiting for results. A lot of this is mental. It’s a roller coaster of emotions.

Jump to this post

Thank you for sharing.

REPLY
hsminc | @hsminc | 3 days ago
In reply to @bobweller "How do they test for plasma in your bone marrow?" + (show)
@bobweller

How do they test for plasma in your bone marrow?

Jump to this post

Some centers test for cells with CD38 and CD138 antigens on cells in the blood - a liquid biopsy in a sense. This is what I have had done for the last yen years. (I was first diagnosed with MGUS in 2002.)

REPLY
1 reply
Mentor
Patty, Volunteer Mentor | @pmm | 2 days ago
In reply to @hsminc "Some centers test for cells with CD38 and CD138 antigens on cells in the blood -..." + (show)
@hsminc

Some centers test for cells with CD38 and CD138 antigens on cells in the blood - a liquid biopsy in a sense. This is what I have had done for the last yen years. (I was first diagnosed with MGUS in 2002.)

Jump to this post

@hsminc so they just do a blood draw?

REPLY
msh466 | @msh466 | 13 hours ago
In reply to @bobweller "How do they test for plasma in your bone marrow?" + (show)
@bobweller

How do they test for plasma in your bone marrow?

Jump to this post

Plasma cell proliferation happens in bone marrow. 10-60 percent is indicative of SMM. Also plasma cells can be seen in a differential of venous blood work where they are not normally seen. Bone marrows have to be performed and flow cytometry needs to be done to evaluate cellular components in bone marrow.

REPLY
DMD81 | @dmdinapoli81 | 12 hours ago

Good morning, I was diagnosed with MGUS at 36, it is important to understand that all the research focuses on people in their 60’s and 70’s. they say 1% chance of progression every year to MM. so you age should factor a lot of decisions you make. I’m tell everyone to get a Baseline! finding MGUS in your 30’s can change things. Also underlying factors can change you Immunoglobulins so don’t freak it they are raised. But do you reach on a Hemonoc. Find one that specializes in MM and MGUS. Also make an excel spreadsheet sheet of the key blood work numbers so you can see any progression or plateau. I have my M-spike, IGG,IGA, Kappa, K/L ratio. Etc.

REPLY
View MoreView Less
Please sign in or register to post a reply.