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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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msh466 | @msh466 | 2 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

Having MGUS is difficult disease. It’s usually found by accident. You have no physical symptoms. You get tests results that can be interpreted subjectively. Are confusing and are abnormal. That is the MGUS phase. Then it’s a waiting game. Blood/urine tests every 6-12 months and see what happens. Next phase is Smoldering Myeloma stage. Bone marrows. Genetic testing. Flow cytometery. Plasma cell differentiation. Plus blood tests every 6 months for monitoring progression. Then it’s another waiting game. And this can go on for months ,years or indefinitely for both MGUS and SMM. The not knowing part versus do all you can to make it go away is nerve racking. Most cases nothing ever happens except the worrying. Few cases however do evolve into MM. I have SMM. But am optimistic and hopeful.

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Mentor
Patty, Volunteer Mentor | @pmm | 1 day 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
I hear you. It's not such an easy, linear disease to understand. I look at it a little bit like I look at car repair… there are things I definitely need to know in order to keep the darn thing running, but there are many things that I can just trust that the car dealership knows and if it's broken they'll fix it or at least give me the information I need to know how to keep the darn thing from breaking in the first place.
it's a simplistic analogy to be sure, but there are so many complicating factors such as coexisting conditions and overall health… Age. What was helpful to me was to ask my hem/onc doc, "When you look at my blood analysis numbers, at what point would you be concerned? At what point would you consider treatment?".
I ask lots of questions that I have written down between visits. I'm sure when he sees me walk in with my notebook his eyes involuntarily roll but he is very patient with me and answers all my questions.
I found this link very helpful. There's a lot of information in there and some of it may not be useful to you but you can cherry pick what you read.
https://www.lls.org/sites/default/files/2024-06/FS40_Monoclonal_Gammopathy_MGUS_2024.pdf
Since your diagnosis, have your numbers remained stable?

REPLY
1 reply
paulita | @paulita | 1 day ago
In reply to @pmm "@paulita I hear you. It's not such an easy, linear disease to understand. I look at..." + (show)
@pmm

@paulita
I hear you. It's not such an easy, linear disease to understand. I look at it a little bit like I look at car repair… there are things I definitely need to know in order to keep the darn thing running, but there are many things that I can just trust that the car dealership knows and if it's broken they'll fix it or at least give me the information I need to know how to keep the darn thing from breaking in the first place.
it's a simplistic analogy to be sure, but there are so many complicating factors such as coexisting conditions and overall health… Age. What was helpful to me was to ask my hem/onc doc, "When you look at my blood analysis numbers, at what point would you be concerned? At what point would you consider treatment?".
I ask lots of questions that I have written down between visits. I'm sure when he sees me walk in with my notebook his eyes involuntarily roll but he is very patient with me and answers all my questions.
I found this link very helpful. There's a lot of information in there and some of it may not be useful to you but you can cherry pick what you read.
https://www.lls.org/sites/default/files/2024-06/FS40_Monoclonal_Gammopathy_MGUS_2024.pdf
Since your diagnosis, have your numbers remained stable?

Jump to this post

Thank you, that's a useful link.
My levels have gone up slightly but not enough to be worried about I think. My teriparatide treatment for osteoporosis may be having an effect on the numbers.
I am just beginning to understand that the polyclonal increases have nothing to do with the monoclonal condition (MGUS). Well, I'll ask my haematologist about that at my next appointment with him next month.
The most important thing for me is to manage my anxiety and trust him I guess.

REPLY
natelew | @natelew | 1 day ago

I was diagnosed about 2-3 yrs ago, mainly for anemia. I get blood work and Iron infusions every 3 months. My hematologist is trying to stay ahead of it.

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