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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.

Does Anyone Have Smoldering Myeloma?are You Doing Treatment?

Does Anyone Have Smoldering Myeloma?are You Doing Treatment?

A MyMyelomaTeam Member said:

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.

posted over 2 years ago
A MyMyelomaTeam Member said:

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.

posted over 2 years ago
A MyMyelomaTeam Member said:

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.

edited, originally posted over 3 years ago
A MyMyelomaTeam Member said:

I m curious, I have been told I am smoldering and my other oncologist calls this MGUS. No treatment yet but I have had several spikes in the blood counts. Waiting is difficult. I have MANY symptoms; severe fatigue, pelvic pain, bone pain in upper legs, arms, neuropathy both feet, hot and sweating a lot. Ick!

posted over 2 years ago
A MyMyelomaTeam Member said:

My doctor treated my high risk smoldering myeloma. I was symptomatic with increased neuropathic stabbing from my thighs down. I also had increased itching (like bugs crawling on me). My bone marrow biopsy results showed 20% which had increased from 5-10%. So, I was treated. I went into a clinical trial 12/16-11/2018. Watch and wait is a decision that some Drs will do. Make sure the Drs are not just general oncologist. You have to have a MM Dr.!! Unfortunately 2months after treatment stopped my IGA doubled. We were going to wait. Until I fractured 2 ribs and lumbar fracture also there are cells in my liver. I progressed to MM. I've started treatment (Daratumumab, Revelimid, Kyprolis,and Dexamethasone). I also had 5 radiation treatments to help the fracture areas.😖

edited, originally posted about 3 years ago
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