1. < Blood Cancers & Disorders

Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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

steveutnv | @steveutnv | 1 day ago
In reply to @recnacgone5 "Hi @mjlandin, I was just recently diagnosed with Mgus. Found out by accident, had labs for..." + (show)
@recnacgone5

Hi @mjlandin, I was just recently diagnosed with Mgus. Found out by accident, had labs for something else and my Rheumatologist informed me that I had a protein in my blood that concerned her. She referred me to a Hematologist who ordered tons of lab work, results showed that I have Mgus. I don't have a clue about Mgus and how it works, what it means, what to do next, etc, etc. All I know is that she wants to check my blood every six months. I need more information on this condition because she really didn't go into detail about symptoms or other things that I should look out for, if I should be concerned or not, so I really don't know what I have. I want to go on YouTube to see if I can learn more about Mgus. Whatever you learn, please share it with us. I would deeply appreciate that!

Jump to this post

I have been diagnosed with MGUS for 8 to 10 years now, male age 77. Recently had a scare when my hematologist ordered a full body bone scan because my kappa (I think) light chains keep going up. The process involved 31 x-rays of my bones, not fun. He said they would look for bone lesions and if they were found it would likely indicate a progression from MGUS to multiple myeloma. Just got the results this morning and hooray, no sign of lytic bone lesions! What a relief!

REPLY
2121 | @leslie2121 | 1 day ago

That’s good news!
May I ask what your FLCs were initially, and what they are now?
I also have MGUS with very low/unquantifiable M protein (4 years now) but my lambda FLCs have fluctuated between 4-5.75 mg/dl ( I think are the units).
The kappa has stayed with in normal range for the most part.
I also have a biclonal mgus apparently.
Go yearly now and my oncologist isn’t concerned. He also thought the FLC elevation isn’t related to mgus. 🤷🏻‍♀️

But also doesn’t know what that would be either. Doing well otherwise.

REPLY
1 reply
2121 | @leslie2121 | 1 day ago
In reply to @leslie2121 "That’s good news! May I ask what your FLCs were initially, and what they are now?..." + (show)
@leslie2121

That’s good news!
May I ask what your FLCs were initially, and what they are now?
I also have MGUS with very low/unquantifiable M protein (4 years now) but my lambda FLCs have fluctuated between 4-5.75 mg/dl ( I think are the units).
The kappa has stayed with in normal range for the most part.
I also have a biclonal mgus apparently.
Go yearly now and my oncologist isn’t concerned. He also thought the FLC elevation isn’t related to mgus. 🤷🏻‍♀️

But also doesn’t know what that would be either. Doing well otherwise.

Jump to this post

I’m a woman, 66 years old.

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