MGUS monitoring: What tests do you have done regularly?

Good question, @teedlum. Typically, follow up visits include physical exam, review of symptoms, as well as blood work and urinalysis to monitor changes.

I'm tagging @neskue3712 @anng53 @gingerw @mascot @pmm @circawdm @deborahjb and other MGUS members to weigh in with their follow up routines and when/if bone marrow tests are done.

@teedlum Some people with MGUS do indeed have a bone marrow biopsy, but not everyone. Much of it depends on what labs tests are showing to your doctor as they continue to monitor you.

As you may already know, MGUS can go a long time with no noticeable symptoms. Many people never develop any other stages of disease. Others advance to smoldering myeloma. But that can be decades in doing so. Your medical team wants to keep an eye on you, and unless your lab results indicate there may be an issue, a bone marrow biopsy may not be done.

If you have other health concerns going on, your team will look at things from an overall perspective. Here is an article from Mayo Clinic about MGUS that may help you understand things a bit more clearly: https://www.mayoclinic.org/diseases-conditions/mgus/diagnosis-treatment/drc-20352367#:~:text=Bone%20marrow%20test.&text=Bone%20marrow%20analysis%20is%20generally,lesions%20or%20high%20calcium%20levels.

Do you have any other questions I can answer for you?
Ginger

Physical exam, full MGUS blood, and urine workup, and only a BMB if things have gotten high enough to worry the doctor of much progression or of another problem. Every 4-6 months. Sooner if I have any CRAB symptoms or severe fatigue, breathlessness bone pain, urinary problems, or kidney/flank pain.

I consulted with three specialists - one at Mayo Clinic. All are MGUS/MM specialists. Even though I am asymptomatic (no CRAB symptoms or crazy blood count or mineral numbers), all of them wanted a "baseline BMB" done. There are simply things in the BMB that cannot be detected in blood tests, related to but not MM, such as amyloidosis as a good example.

Colleen,
Thank you very much for your information and request from other MGUS members.
😊

I am asymptomatic and my blood test results are consistent. I’ve opted to wait and see and have not done a bone marrow biopsy yet. I was seen every three months the first year and we have moved to four month intervals. I will have another full body scan in February.
The hem/onc doc has much more information from a BMB but at this point I am content to wait and see. I am not interested in getting one until I can see that there is progression.
I really rely a lot on my medical provider, but of course it also has to make sense to me. I read a lot and he is great about giving information that is useful to me. Ask lots of questions. I always have a list when I go see him.

Ginger,
Thank you very much for your detailed reply and the link!
At this time I don’t have any other questions about MGUS.
Warmest wishes and 😊 voting day

I was diagnosed with IgG MGUS in 2021 and currently have blood tests for
CBC PLT AUTODIFF; IMMUNOFIXATION, SERUM; IMMUNOGLOBULINS GAM; SERUM FREE LIGHT CHAINS every 6 months. I also had abdominal fat pad to rule out Amyloidosis. No BMB was requested to date.

I have just been diagnosed with MGUS and have been reading up on it before my first hem visit next week. There is a new study out of Dana Farber showing very high correlation between MGUS and coronary events like MI or stroke. Has anyone had these results discussed with them or their treatment changed in any way? The doctor at DF is well-respected Dr Ghobrial. Thank you for sharing your information with this group.

Thank you, nolarn. I looked up the doc you mentioned because I’m participating in her PCROWD study at Dana Farber. Every six months I let them know when I will see my hematologist and they send a kit to receive a vial of my blood which will be Fedexed back to them. Suggesting you may want to contribute to PCROWD also.

We are all in this MGUS journey together, and though I will never know what they learn about my blood, I’m glad to contribute to their research. Locally in Los Angeles, I’m also contributing to Cedars-Sinai’s Embarc Study. This one provides feedback up to monthly.

Yes, I have a few known cardiovascular risk factors, and they are concerning. So far I’m doing okay. Bless you!