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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 know anything about multiple myeloma with extramedulary aspects?

A MyMyelomaTeam Member asked a question 💭
Crestview, FL
February 25
 · 
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A MyMyelomaTeam Member

My husband had that type of soft tumor that began growing about 8-10 years into his MM journey. The Oncologist at that time (around 2014 felt it didn't need attention but always took a look at it. When he was accepted for a T-cell Transplant and we moved to another city that had a large cancer center, they decided let it be before the T-cell transplant as he was prepping for that. They were reluctant to give him radiation for it as it was directly in front of his heart. After finding out the T-cell did not take, they sent him to radiation to have the tumor radiated. And he did fine. I think he went for two weeks and it reduced in size with no adverse effect to the heart. Amy Derck.

February 26
A MyMyelomaTeam Member

Good thing to know.

February 26
MyMyelomaTeam

What is extramedullary multiple myeloma?

Extramedullary disease occurs when myeloma cells spread outside the bone marrow and form tumors in soft tissues or organs. These are called extramedullary plasmacytomas.

About 80 percent of these tumors form in the upper respiratory tract, including:
* Nose
* Sinuses
* Upper throat

Show Full Answer

What is extramedullary multiple myeloma?

Extramedullary disease occurs when myeloma cells spread outside the bone marrow and form tumors in soft tissues or organs. These are called extramedullary plasmacytomas.

About 80 percent of these tumors form in the upper respiratory tract, including:
* Nose
* Sinuses
* Upper throat

However, they can also develop in other areas such as:
* Soft tissues next to bones
* Lymph nodes
* Organs like the lungs, liver, spleen, skin, or breasts
* Airways, digestive system, or urinary tract

Symptoms depend on the tumor's location but may include pain or blockages. For example, tumors in the airways or digestive system can cause obstructions. Extramedullary lesions can appear at initial diagnosis or during a relapse. They're most commonly found in soft tissue next to bones affected by myeloma, though they can occur in tissues or organs away from bones as well.

The prognosis for extramedullary disease can be more challenging, particularly when it involves soft tissues rather than bone-related areas. However, when extramedullary plasmacytomas occur as solitary tumors (not yet multiple myeloma), about 71 percent of people don't develop multiple myeloma within 10 years.

If you're dealing with extramedullary aspects, it's important to work closely with your oncology team to monitor progression and adjust treatment as needed.

February 25

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