Does anyone else have MGUS?

Same with my 83 year-old husband's hematologist/oncologist. Nothing new with it has come up in the past 2 1/2 years since MGUS diagnosis. He gets bloodwork done and has follow-ups with the doc every 6 months.

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