Hi Everyone Did Anyone Have Smouldering Myeloma And Then Go On To Need Treatment For MM? | MyMyelomaTeam

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Hi Everyone Did Anyone Have Smouldering Myeloma And Then Go On To Need Treatment For MM?
A MyMyelomaTeam Member asked a question 💭

I currently have Smouldering Myeloma and am not having any treatment just being monitored every three months. My doctor tells me what my light chain levels are and this seems to be the most important thing that they are monitoring
My light chain levels are currently 1500 having risen from 350 at the start. They seem to rise by 100 every three months
My doctor said earlier in the year that I would probably need treatment next year (2024)
I was wondering if anyone can remember what their light… read more

posted October 7, 2023
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A MyMyelomaTeam Member

Yes. Your kappa is one thing. But to really know if you are progressing the best accuracy is biopsy. I'm between 30 and 40 percent,and smoldering there for a long time. Definitely get a biopsy. Hang in there. God bless.

posted October 30, 2023
A MyMyelomaTeam Member

Toni,
Have you had a bone marrow biopsy? Are you working with a MM Specialist? Are your plasma cells under 10%? Do you know what your M spike is? It is good that you don’t have bone involvement. Have you had a DEXA scan for osteoporosis? The bone marrow biopsy will tell you if you have translocations, deletions, gain, or amplifications. Check out Multiplemyelomahub.com. “The IMWG 2/20/20 risk stratification model for smoldering multiple myeloma.” Serum M-Protein>2g/dl, serum free light chain ratio >20, Bone marrow plasma cells infiltration >20%. Not just one thing is looked at, so be aware of the others.
Paula 🌹

posted October 8, 2023
A MyMyelomaTeam Member

In January 2023 my light chains were 2447. Scary number. They are now in the normal range. Started treatment in Feb with Revlimid /Dex and Dara shots. Now my # is 13. Huge drop. Love that it’s working. I have no symptoms at this point. Was diagnosed smoldering in 2021.. wish all the best to you

posted December 7, 2023
A MyMyelomaTeam Member

Toni,
I have SMM. If I had not changed Doctors and had another bone marrow biopsy, I may not have known I progressed from MGUS to SMM.
Paula

posted October 30, 2023
A MyMyelomaTeam Member

Thanks Brad
I will ask my consultant about having a biopsy when I speak with him in November.
Have a good day 😊

posted October 30, 2023

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