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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.

I want to know is their anyone in my group been diagnosed with Extramedullary Myeloma? If so what has your experience been like ?

A MyMyelomaTeam Member asked a question 💭
Chester, VA

What has your treatment plan involved? And is it in remission or how long did it stay in remission?

September 8
 · 
Reactions
A MyMyelomaTeam Member

Letitia,
@A MyMyelomaTeam Member had it in his shoulder. Click on his name to read his story.
Paula🌹

September 8
A MyMyelomaTeam Member

Really I did not know I will do just that. I can't wait until Thursday to see what my oncologist has in mind for treatment

September 8
A MyMyelomaTeam Member

Put your results and/or question into chatGPT.
I'm sure someone too , will respond to your EMM
Prayers

September 8 (edited)
MyMyelomaTeam

Has anyone on MyMyelomaTeam been diagnosed with extramedullary myeloma, and what have their experiences, treatment plans, and remission journeys looked like?

Extramedullary myeloma (EMM) is when myeloma cells spread outside the bone marrow and form tumors in soft tissues or organs. It can appear at initial diagnosis or Show Full Answer

Has anyone on MyMyelomaTeam been diagnosed with extramedullary myeloma, and what have their experiences, treatment plans, and remission journeys looked like?

Extramedullary myeloma (EMM) is when myeloma cells spread outside the bone marrow and form tumors in soft tissues or organs. It can appear at initial diagnosis or during a relapse.

Common locations where these lesions can develop include:

- Soft tissues near affected bones
- Sinuses, nasal cavities, or throat
- Lymph nodes
- Organs like the lungs, liver, spleen, or skin While specific member stories aren't available here, the MyMyelomaTeam community is a great place to connect with others who have firsthand experience with extramedullary myeloma — sharing treatment journeys, remission timelines, and emotional support.

Treatment plans vary by individual, so it's really important to work closely with a myeloma specialist to find the right approach for your specific situation. On the remission side, it's worth knowing that remission looks different for everyone with myeloma. There are two main types:

- Partial remission — Some cancer cells remain but the disease is less active
- Complete remission — No cancer is detectable in tests, though tiny amounts may still exist

Regular monitoring and sometimes maintenance therapy are key parts of staying on top of things after remission.

September 8

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Has anyone on MyMyelomaTeam had multiple myeloma with extramedulary disease at diagnosis?

A MyMyelomaTeam Member asked a question 💭
Crestview, FL
May 30

can MM spread to the bones and cause a small lump or rising above the skin?

A MyMyelomaTeam Member asked a question 💭
West Monroe, LA
August 13 (edited)

People Who Say to MM patients “ But You Look Okay “

A MyMyelomaTeam Member asked a question 💭
want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what
January 14

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