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!

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Patty, Volunteer Mentor | @pmm | 6 days ago
In reply to @harty "Why not show your spread sheet? Harty" + (show)
@harty

Why not show your spread sheet?
Harty

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@harty
we discourage the sharing of medical records on connect. It's a privacy issue and although some people are quite willing to self disclose, not everybody is and once things get on the Internet… They tend to show up other places.
At my cancer center there is a graph of lab results in my EMR which is useful enough for my purposes but an excel spreadsheet would be very convenient.

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Mentor
Patty, Volunteer Mentor | @pmm | 6 days ago
In reply to @dmdinapoli81 "Good morning, I was diagnosed with MGUS at 36, it is important to understand that all..." + (show)
@dmdinapoli81

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.

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@dmdinapoli81
thanks so much for jumping in. It's true that most of the research involves older patients. Of course this disorder mostly affects older patients. I'm so sorry that you were diagnosed so early. Since MGUS is usually diagnosed incidentally when something else is wrong and we older folks are more frequent healthcare fliers, I wonder how long I've actually had MGUS. Maybe decades.
You sound very organized and you have inspired me to create some graphs (if I can remember how!)

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Mentor
Patty, Volunteer Mentor | @pmm | 6 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.

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@msh466
I think anxiety leading up to our schedule blood tests is pretty universal. How do you cope with that stress?

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DMD81 | @dmdinapoli81 | 5 days ago
In reply to @gingerw "@DMD81 I also did a spreadsheet, but I list the dates/place of blooddraw across the top,..." + (show)
@gingerw

@DMD81 I also did a spreadsheet, but I list the dates/place of blooddraw across the top, and results down the side. Using a landscape configuration, it makes sense to me. My labs can come from 3 different sources. Once I have the basic spreadsheet printed out, I fill in values by hand.
Ginger

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It definitely is hard for test results when you go to Quest or Labcorp. My hemonoc has Labcorp in his office so if I get bloodwork outside the office I go there.

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DMD81 | @dmdinapoli81 | 5 days ago
In reply to @harty "Why not show your spread sheet? Harty" + (show)
@harty

Why not show your spread sheet?
Harty

Jump to this post

Because my spreadsheet has my personal data.

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msh466 | @msh466 | 5 days ago
In reply to @dmdinapoli81 "Good morning, I was diagnosed with MGUS at 36, it is important to understand that all..." + (show)
@dmdinapoli81

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.

Jump to this post

Another way to keep track of results on all blood urine bone marrow test results is on your chart. Most health institutions monitor you by graphs. Highlighting abnormalities. If you start jumping around to different facilities then this spreadsheet would be good thing.

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paulita | @paulita | 4 days ago

Hi All,

I was diagnosed with MGUS 3 years ago. I have a review appointment with my haematologist next month. I have never really understood the various factors making up the diagnosis. So If anyone can help or point me to an easy to follow website or video, I'd appreciate it.

1) Faint monoclonal band - IGG kappa (So I think this is the one to worry about)
2) Free kappa light chain elevated at 27.88
3) Kappa/Lambda ratio 1.6 (just at the limit I think)

Now here's the bit I don't understand

IGM polyclonal protein elevated at 2.85
IGA polyclonal protein < 0.5 so I'm probably IGA deficient.

Do this last two polyclonal proteins have anything to do with the Faint monoclonal band? Or are they separate issues? My haematologist talks about a possible auto immune disease although nothing has been found.

I was feeling worried until I read someone here talk about how lucky she is to have MGUS as she gets regular blood tests and the results are scrutinised. I am going to use that as a reframe. I just wish I could understand it all better !

Thanks

REPLY
4 replies
mikxtr | @mikxtr | 3 days ago
In reply to @dmdinapoli81 "Good morning, I was diagnosed with MGUS at 36, it is important to understand that all..." + (show)
@dmdinapoli81

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.

Jump to this post

Brilliant! And I live in spreadsheets (work work work). Now I'm excited to build a new one. 😏

REPLY
Mentor
Patty, Volunteer Mentor | @pmm | 3 days ago
In reply to @paulita "Hi All, I was diagnosed with MGUS 3 years ago. I have a review appointment with..." + (show)
@paulita

Hi All,

I was diagnosed with MGUS 3 years ago. I have a review appointment with my haematologist next month. I have never really understood the various factors making up the diagnosis. So If anyone can help or point me to an easy to follow website or video, I'd appreciate it.

1) Faint monoclonal band - IGG kappa (So I think this is the one to worry about)
2) Free kappa light chain elevated at 27.88
3) Kappa/Lambda ratio 1.6 (just at the limit I think)

Now here's the bit I don't understand

IGM polyclonal protein elevated at 2.85
IGA polyclonal protein < 0.5 so I'm probably IGA deficient.

Do this last two polyclonal proteins have anything to do with the Faint monoclonal band? Or are they separate issues? My haematologist talks about a possible auto immune disease although nothing has been found.

I was feeling worried until I read someone here talk about how lucky she is to have MGUS as she gets regular blood tests and the results are scrutinised. I am going to use that as a reframe. I just wish I could understand it all better !

Thanks

Jump to this post

@paulita there is certainly a lot of information to absorb. I think the best source of information is from your hematologist/oncologist. None of us are physicians although we have picked up useful information here and there. We're not in a position to explain the complexities and I can speak for myself that I'm just figuring mine out myself. these blood disorders are complex and we are all very different. Complicating matters are coexisting conditions.
It's great that you've got an upcoming appointment because you can write your questions down and really talk to your physician about them.
When were you first diagnosed with MGUS?
I like your reframing!

REPLY
harty | @harty | 3 days ago
In reply to @paulita "Hi All, I was diagnosed with MGUS 3 years ago. I have a review appointment with..." + (show)
@paulita

Hi All,

I was diagnosed with MGUS 3 years ago. I have a review appointment with my haematologist next month. I have never really understood the various factors making up the diagnosis. So If anyone can help or point me to an easy to follow website or video, I'd appreciate it.

1) Faint monoclonal band - IGG kappa (So I think this is the one to worry about)
2) Free kappa light chain elevated at 27.88
3) Kappa/Lambda ratio 1.6 (just at the limit I think)

Now here's the bit I don't understand

IGM polyclonal protein elevated at 2.85
IGA polyclonal protein < 0.5 so I'm probably IGA deficient.

Do this last two polyclonal proteins have anything to do with the Faint monoclonal band? Or are they separate issues? My haematologist talks about a possible auto immune disease although nothing has been found.

I was feeling worried until I read someone here talk about how lucky she is to have MGUS as she gets regular blood tests and the results are scrutinised. I am going to use that as a reframe. I just wish I could understand it all better !

Thanks

Jump to this post

I think the internet is a wonderful resource for MUGUS. You might find some stuff that causes anxiety, but just discuss it with your oncologist. I think the docs worry too much about patient's anxiety. It is important for patients to educate themselves about their disease.
Harty

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