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Hi, Anyone Else Dealing With Extra-medullary Myeloma (EMM)?

A MyMyelomaTeam Member asked a question 💭
Jersey Shore, PA

My version of multiple myeloma is rare apparently. I have extra-medullary myeloma, and it has manifested itself in two liver lesions, and now a soft-tissue plasmacytoma on my right gluteus medius muscle. The liver lesions resolved under treatment of Daratumamab-Pomalidomide-Dexamethasone, over 18 months. In April and July 2024, MRI results showed a growing plasmacytoma on my muscle, which has been biopsied and is definitely MM, with the same markers as before, CD138 and CD56. Biopsy results… read more

August 21
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A MyMyelomaTeam Member

Keith,
It sounds like you are knowledgeable about the treatments. Our bodies are like cars, they replace parts that don’t works or if that doesn’t work, replace another one, then fix the dents. Basically, they are going to try a treatment, and if it doesn’t work, try another one. We are fortunate there are so many.
Paula 🌹

August 24
A MyMyelomaTeam Member

I would probably try Talvey. I would also consider Blenrep through a clinical trial. Cytoxan might also be an option for you. I didn't do well with Cytoxan, but you might do fine.

August 21
A MyMyelomaTeam Member

Thanks Donna and Pam, it's always good to have support and advice. Here's what is on the table in my mind, in order according to me (haha):

(1) Try Dara-Ninlaro-Dexamethasone. (DIxd). Ninlaro is interesting because it interacts with myeloma via the same pathway as Velcade. I was on Velcade in 2022 as induction therapy prior to my ASCT, and I responded very well. I'm refractory to revlimid and pomalyst apparently, so I need something other than those proteasome inhibitors. Ninlaro is used when a patient fails at least one therapy. Ninlaro may be a good choice; or

(2) Try Dara-Kyprolis-Dexamethasone. Kyprolis is supposed to be better than other therapies, used when a patient fails two prior therapies. I know how Kyprolis works, but I am not a medical doctor, so I don't know if it matters in my case. Some ppl use Ninlaro - Dex without anything else; or

(3). Try other drug regimens (there's a long list made public by MD Anderson) if those aren't appropriate or don't work; or

(4) Do a second ASCT. Patients with EMM and plasmacytomas seem to not receive as much benefit from transplants as "normal" mm patients. Continue maintenance meds thereafter; or

(5) Get a surgical oncologist to use ablation or radiation on the plasmacytoma, and continue with a maintenance regimen; or

(6) Start a bispecific like Talvey. I would like to explore the above first, since a bispecific is an intensive program and affects T-Cells, similar to a CAR-t. For me, a CAR-t is out, research released in July 2023 shows that patients with EMM don't get as much benefit from a CAR-t as others. That may also then mean I shouldn't do a bispecific. No research on that as far as I know; or

(7) Traditional chemo like cytoxan, or a bone marrow transplant.

That was a long answer.

August 23
A MyMyelomaTeam Member

Keith,
Aren’t we lucky to have Donna Andrew to help us?
Paula🌹

August 21
A MyMyelomaTeam Member

Extramedullary plasmacytoma (EMP) can indeed develop into multiple myeloma in about 10 to 30 percent of cases. If you are living with EMP, sharing your experiences on MyMyelomaTeam, a social network for people with myeloma, can be very helpful. There, more than 13,900 members come together to ask questions, give advice, and Show Full Answer

Extramedullary plasmacytoma (EMP) can indeed develop into multiple myeloma in about 10 to 30 percent of cases. If you are living with EMP, sharing your experiences on MyMyelomaTeam, a social network for people with myeloma, can be very helpful. There, more than 13,900 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.

August 21

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