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.

karencan2025 | @karencan2025 | 2 days ago
In reply to @gingerw "@karencan2025 Yes, waiting to see what the cancer center has to say can be very anxiety..." + (show)
@gingerw

@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

Jump to this post

We have an update, although more diagnostic have to be run to fully confirm things, followed by a treatment plan. I guess there are different sorts of monoclonoal proteins, and I know so little about them. But according to the hematologist, the ones he has indicated non-Hodgkin's lymphoma. It's a very rare variant called Waldenstrom's macroglobulinema (4-6 per million people are diagnosed with it.) There appears to be some link between this disease and myeloma but I hope that won't be the case. So I guess we go from here, and I can just hope that treatment will be successful. Thanks again for the support.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | 2 days ago
In reply to @karencan2025 "We have an update, although more diagnostic have to be run to fully confirm things, followed..." + (show)
@karencan2025

We have an update, although more diagnostic have to be run to fully confirm things, followed by a treatment plan. I guess there are different sorts of monoclonoal proteins, and I know so little about them. But according to the hematologist, the ones he has indicated non-Hodgkin's lymphoma. It's a very rare variant called Waldenstrom's macroglobulinema (4-6 per million people are diagnosed with it.) There appears to be some link between this disease and myeloma but I hope that won't be the case. So I guess we go from here, and I can just hope that treatment will be successful. Thanks again for the support.

Jump to this post

@karencan2025 Once you have more information, I am sure there will be relief from the "not knowing exactly what it is"! If you go to the Blood Cancers & Disorders support group here, then type in Waldenstrom in the search bar, there will be a list of discussions you can review. Personally I might peruse it lightly, but not take a lot to heart until you have more complete information.

How are you doing today, handling this new information?
Ginger

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