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Does Anyone Know How Long They Had MGUS & SMM Before Advancing To MM?

A MyMyelomaTeam Member asked a question 💭
San Jose, CA

I first found out I had SMM 3 years before getting MM. It was discovered by accident after having a bike accident and breaking 9 ribs on my left side. They were concerned about why so many ribs were broken and decided to do some more testing.

September 16
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A MyMyelomaTeam Member

Rick,
I went to my Primary Care Doctor in 2011 because I didn’t feel great. He did blood tests, and to,d me they were normal, but a year later when I returned for my physical again and got blood tests, I realized I never saw the first one so asked for copies of both. Even though he told me they were both normal, they weren’t. My white blood cells were low. I might have had MGUS back then. In September 2020 when my hip was hurting a Rheumatologist did blood tests and sent me to an Oncologist. Diagnosis with MGUS then. SMM March 2023. I have t(14;16) which is high risk when I progress to MM, which is why I progressed quickly.
Paula🌹

September 17
A MyMyelomaTeam Member

No, my older sister has had mgus for years. She is fine. I ignored symptoms and landed up with active myeloma with over 95% of my marrow involved 😤 So are you getting treatment now?

September 16
A MyMyelomaTeam Member

Hi Donna, yes I am getting treatment and doing quite well. I just don't know my progression timeline. Maybe it is a good thing, since I see a lot of symptomatic patients with MGUS and SMM worried to death about progression with no real known way of slowing it down.

September 20 (edited)
A MyMyelomaTeam Member

Paula, that was my other question, if you knew when you thought you had MGUS or SMM. I don't recall any symptoms that would make me suspect I had either, guess because usually they don't have symptoms. For all I know, I could have been going thru the stages for 20 years or more.

September 20
A MyMyelomaTeam Member

Yes, some people have shared their experiences regarding the progression from MGUS (Monoclonal Gammopathy of Undetermined Significance) to multiple myeloma (MM):

- One member was diagnosed with MGUS in 2014 and it progressed to full multiple myeloma by late 2015
- Another member mentioned ongoing monitoring of MGUS before Show Full Answer

Yes, some people have shared their experiences regarding the progression from MGUS (Monoclonal Gammopathy of Undetermined Significance) to multiple myeloma (MM):

- One member was diagnosed with MGUS in 2014 and it progressed to full multiple myeloma by late 2015.
- Another member mentioned ongoing monitoring of MGUS before starting treatment for multiple myeloma.

However, it's important to note that most people with MGUS do not see it progress to smoldering multiple myeloma (SMM) or multiple myeloma. Regular follow-ups and monitoring are crucial to catch any progression early.

September 16

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