Ultra High-risk Smoldering Multiple Myeloma Diagnosis. | MyMyelomaTeam

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Ultra High-risk Smoldering Multiple Myeloma Diagnosis.
A MyMyelomaTeam Member asked a question πŸ’­

I just discovered I am ultra high risk smoldering MM due to having chromosome abnormalities 1q21, 1q22, and q32. It makes me less likely to benefit from treatment. Looking for best way to deal with it. ANyone have any experience?

posted November 18, 2023
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A MyMyelomaTeam Member

Stevon, I would for sure find a doctor that only sees myeloma patients. A Specialist at a facility that does research and clinical trials. It makes sense to me to treat smoldering before it turns into full blown myeloma. I am also reading that some doctors want to get rid of the smoldering diagnosis all together. The Multiple Myeloma Research Foundation has a patient navigation site that might be helpful πŸ’–πŸ’•

posted November 19, 2023
A MyMyelomaTeam Member

Check out Larry2. He has lots of posts about supplements and changing your diet. I like frankincense, nutritional yeast and Noni. I’ve seen my numbers get better.
Paula 🌹

posted November 18, 2023
A MyMyelomaTeam Member

Hi Stevon,
My doctor says there is no such thing as high risk in Smoldering, only in MM. I think she is only trying to make me feel better. The last HealthTree video I watched says high risk MM patients still only live 3-5 years after they get MM, despite all the new drugs. They think it won’t be long before they find a drug that works, since they are all working together on it. That’s hopeful. Your SMM may not progress for awhile. Make your peace with God, love your family, and enjoy life. I watched my mom suffer from strong chemo for ovarian cancer. I would not want to do that, but with MM, they have many other types of drugs. I decided to try and live my life to the fullest, by loving everyone around me. I have other commorbidities and drug allergies that will make treatment a challenge. I know some doctors recommend Trials for HR Smoldering. You could look into that.
Paula 🌹

posted November 18, 2023
A MyMyelomaTeam Member

I think they can as long as the trial guidelines are followed

posted December 8, 2023
A MyMyelomaTeam Member

Stevon, smoldering has to be stressful to deal with. I don't think the doctors are in agreement on how to treat it. You need a top myeloma specialist that is up on the latest information and works at a major center that does research and clinical trials. πŸ’•πŸ’–πŸ™πŸ₯°

posted December 7, 2023

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