Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMyelomaTeam Member asked a question 💭
Chicago, IL
October 28, 2025
 · 
Reactions
A MyMyelomaTeam Member

I have light chain only, w 40:1 Kappa:lambda and 20% plasma cells in the marrow . So its technically high risk SMM. Fortunately no CRAB-SLIM to date (I did have transient issues w calcium, anemia and renal function that didnt meet criteria and have normalized-nobody really has a good explanation of that so far) and standard risk cytogenetics by FISH. I try to remain positive attitude but am realistic. My wife still sort of in denial and hopes it might "burn out" rather than progress. My hematologist suggests we watch the trend rather than jump into treatment or a trial.

October 30, 2025
A MyMyelomaTeam Member

Sorry to say the odds are not in your favour. What kind of Myeloma do you have?

October 30, 2025
A MyMyelomaTeam Member

Hi Gary,
Everything I have read says it does. High risk factors tend to invite more changes. I started out with MGUS t(14;16) with 16q deletion, then progressed to SMM and added Monosomy 13 and +5. I find that when I eat super healthy, I can actually bring my high numbers down. Check out Dr Brandy’s book “ Beat Back Cancer Naturally.”
Paula🌹

October 28, 2025
MyMyelomaTeam

Does high-risk smoldering myeloma always progress to active multiple myeloma?

No, high-risk smoldering myeloma doesn't always progress, though the risk is significant. The likelihood of progression varies over time:

- In the first five years after diagnosis, about 10% of people with smoldering myeloma develop active Show Full Answer

Does high-risk smoldering myeloma always progress to active multiple myeloma?

No, high-risk smoldering myeloma doesn't always progress, though the risk is significant. The likelihood of progression varies over time:

- In the first five years after diagnosis, about 10% of people with smoldering myeloma develop active myeloma each year
- Between years 5-10, this drops to 3% per year
- After 10 years, the risk decreases to about 1% per year

Certain factors increase the chances of progression to active myeloma, including:

- Plasma cells with specific gene changes
- High numbers of plasma cells in bone marrow
- High or increasing M protein levels
- M protein made from IgA rather than IgG
- Bone lesions visible on X-rays

Because early treatment has shown benefits, many doctors now recommend starting treatment for high-risk smoldering myeloma rather than waiting. Regular monitoring through follow-up visits and testing is essential to catch any progression early, giving you the best chance for effective treatment if it does advance.

October 28, 2025

Related Questions

View All
A MyMyelomaTeam Member asked a question 💭
Manchester, ME

A MyMyelomaTeam Member asked a question 💭
Brandon, FL

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In