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Does anyone have smoldering myeloma?are you doing treatment?

A MyMyelomaTeam Member asked a question 💭
Dallas, TX
December 12, 2018
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Answer Summary

Members shared varied experiences with smoldering myeloma management, with most describing a watch-and-wait approach involving blood tests... Read more

Members shared varied experiences with smoldering myeloma management, with most describing a watch-and-wait approach involving blood tests every three to six months and no active treatment unless symptoms appear or numbers worsen, though some expressed frustration with the uncertainty of waiting while knowing cancer cells are present. Several members discussed practical strategies including CBD oil, natural supplements like curcumin and berberine, IgG subclass testing for immune system problems, Reclast infusions for bone strength, and clinical trials with Revlimid and Daratumumab for high-risk cases, with some reporting success in lowering their numbers. A recurring theme was the emotional challenge of living with the disease's unpredictability, the importance of finding experienced myeloma specialists rather than general oncologists, and the wide range of progression timelines from months to over ten years in the smoldering stage.

A MyMyelomaTeam Member

I was diagnosed with high-risk smoldering myeloma in early 2022. Started treatment with Revlimid and Dex. My numbers are coming down slowly. Prior to treatment, the MM specialist showed me research done on both progressions to full-blown MM and survivability! That was all I needed to see to make my decision. Anything I can do to stall any damage to my major organs and bones I will do! Hoping for the best results!

August 15, 2022
A MyMyelomaTeam Member

I was diagnosed with Smoldering Myeloma over ten years ago… . My doctors at Winship Cancer Center, Emory University-recommended only regular follow-up with office visits and labs for my particular case about every 3 months. My labs have shown no significant change over time in my condition.

June 17, 2022
A MyMyelomaTeam Member

I have had SMM for 6+ years. I have blood tests every 3 months, but no treatments. Dr. Doesn't want to do anything until my symptoms elevate for fear of causing me to go into MM. I started out with dizzy spells. Blood tests at that time caused the SMM diagnosis. I had anemia which was the cause of the dizzy spells.
I have adjusted to life with SMM and seldome think about it. There is so much to do before I don't need this body anymore. I don't drink, but I enjoy good cigars. I love my life and family and plan to enjoy every minute God gives me.

May 3, 2020
A MyMyelomaTeam Member

Yes I have smoldering myeloma which started as MGIS in April 2019. I have been treated at Dana-Farber in Boston for the last 6 months. The treatment is with Daratumumab infusion and Revlimid medication. I started with 8 one week treatments in October and now every other week and soon to once a month depending on blood results. I can’t say enough about my wonderful treatment at DFCI.

April 6, 2020
A MyMyelomaTeam Member

Been diagnosed with SMM for about a year now. No treatment as of yet. Went to John Hopkins Hospital, and was told that if I was going to get cancer that MM was the best kind. It can have a long life span. And with me having SMM, even longer. I do not care what kind of cancer- I want it out of me.

February 8, 2019 (edited)

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