Absolutely get a second opinion from a hematologist/oncologist that has specialised in Multiple Myeloma. Ask if there are any medicines to help elevate your immune system to combat MGUS. If you can get that under control you MIGHT be able to put off active MM and if they determine that you do have MM then it may keep it in the “slumbering myeloma” category.
Have the lab that runs the tests on your bloodwork to explain ALL of the report. Get a personal copy for yourself every time they do the labs on your blood. Keep the reports in a folder. Ask if they have a booklet that ‘explains’ each test that is done on your blood. If they don’t then contact the local Cancer Institute and they should be able to get it to you. Or contact your state’s Multiple Myeloma organization and ask for ALL of their booklets about MM. And make sure they include the booklet that explains the bloodwork reports. Good luck and God Bless, “Teece”

My doctor won't even tell me what type of MM I have, so next year I am switching to Stanford. But from the tests I get looks like I am a Lambda light chain MM. I have no M-spike and haven't even been tested for it since I got diagnosed in March '24. My MM has been stable since the 4th week of treatment all my numbers in the normal range. I am asymptomatic with no side effects from treatments. I question if I am even active MM. I don't care that I am not getting more details. Sites like this give me more insight. I never even knew that it is possible to not have an M-spike with light chains MM.

I’m at a stage where I get a routine annual BMB and PET scan once a year even though my blood numbers are normal.

Absolutely get a MM specialist! They could explain better the different types of MM. Each type has its own characteristics and "lanes" so to speak...
BMB are kinda painful... I've had two and I'm trying to avoid anymore. Every three months I go for a full blood panel. Very extensive. Every six months I do the urine as well. Both include electrophoresis which is a vey stringent test. So far no issues and I'm still in a deep remission almost 3 years out...😉

I agree with @A MyMyelomaTeam Member - get an MM specialist. I see a local oncologist monthly , and go to a specialist every 6 months, or when I have concerns. It’s worth it!!

Mentioned Users

A MyMyelo...