Does anyone else have MGUS?

I've had MGUS for 8 years so far without it progressing to any symptoms. I get bloodwork every 6 months and had a baseline bone marrow biopsy 8 years ago; I'll have another if my kappa/lambda numbers or proteins ramp up enough. It is a waiting game in which there is ~1% chance of it progressing to smoldering or MM. Other than getting more answers from your doctor, not a lot one can do other than healthy living with diet, exercise, destress, rest, and such.

It is mind-boggling, to figure out this MGUS. I have IgE Mgus which is rare. I will get another blood panel in April but am unsure as to preventative measures or diets?

@cdeldeo MGUS is usually a "watch and monitor" treatment plan. That is, bloodwork is done every three to six months to monitor specific values. Getting adequate and restful sleep, keeping a good healthy diet plan for you, moderate exercise, and managing stress levels will all help to keep you as "on top" of your situation as you can.

From what I have discovered, having IgE MGUS is pretty rare, but the treatment plan is basically the same. I hope you have access to a large teaching hospital or good cancer center with a hematologist oncologist to monitor your condition.
Ginger

Mayo Clinic is 20 minutes away so I feel I am in good hands. Thanks for your reply...

@cdeldeo it is a bit frustrating, this watch and wait thing, isn’t it? You feel like you ought to be doing something to protect yourself. A healthy diet and regular exercise are good for all of us and that’s the kind of thing that my hematologist/oncologist recommends. I try to look at it with some positivity and remind myself that I probably get the best medical care of anybody I know. I get regular bloodwork, skeletal, scans, and an occasional CT scan on a regular basis. And it’s all diagnostic.
I try to keep my head in a good place about MGUS. Watch and wait is certainly the least intrusive intervention…!
Have a good week.
Patty

I have MGUS my GP is doing nothing just tell me I’m a hypochondriac can anybody help please with advice

They do neither?

@joyelizabeth Have you been formally diagnosed with MGUS? What tests were done, and by whom? If you have the diagnosis, please get to a hematologist oncologist who will monitor your condition. This is not the time for a general practitioner to be undermining you and minimizing the situation! Many times they do not have the knowledge base to adequately address MGUS.
Ginger

Hi everyone,

This has been such a great platform for information and support. Thank you everyone. My received a diagnosis of MGUS on 1/2/24. I am scheduled for a bone marrow biopsy, blood labs and a pet scan with nuclear medicine on March 13th at Memorial Sloan Kettering in Manhattan. Any advice on what I should expect? I'm planning to go to work the next day... I work with young autistic children... any thoughts?

Thans,
Jeannie

Hi Jeannie, from my personal experience with 13 bone marrow biopsies and nuclear medicine testing, I would have had no problem returning to work the next day. You won’t want to be out in the school yard playing basketball for a day or so but most other activities return to normal. ☺️

The biopsy site will most likely be a little tender but shouldn’t be painful the next day. It feels more like a bruise. Depending on the biopsy site, you’ll lie on your side or your belly. The most common bone marrow biopsy site is the back of your hip bone (posterior iliac crest). Basically, near one of the large dimples above your butt.

This is done with an aspiration/biopsy needle so there’s no large, open surgical area. You’ll have a compression bandage on there for 24 hours… bandaid with a larger piece of gauze under for the compression. There shouldn’t be any residual bleeding; the compression is there just in case. After 24 hours you can shower.

Seeing that you’re having this done at a large clinic, did you opt for mild sedation for the biopsy?