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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'm looking at doing a possible Car-T trial. Have heard and read mixed reviews on Car-T in general. Wanting your feedback! Thanks!

A MyMyelomaTeam Member asked a question 💭
St. Peter, MN
March 10
 · 
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A MyMyelomaTeam Member

Hi I started with dry mouth condition didn't understand why. Had a duel forehead headache..I had a scan to rule out salivary glands blockage. All was ok..but T1cbone showed lesions on my scan. I didn't understand what lesions were..or why I had this. Im angry at myself..why did I get this..pet scan bone marrow did not pinpoint MGUS but straight to MM. Why? Will i die? Im scared of the pain..I live terrified thinking I will bend and break..I live paranoid..this is my 3rd cancer. Will I die from this one? Very depressed..

March 10
A MyMyelomaTeam Member

Was looking for personal stories of how the initial side effects were for people.

March 10
MyMyelomaTeam

What feedback are you looking for about CAR-T cell therapy for myeloma?

CAR-T therapy has shown promising results for people with relapsed or refractory myeloma, especially when other treatments haven't worked. Here's what the data shows:

Effectiveness
- About 3 out of 4 people had fewer signs of cancer
- 1 out of 3 Show Full Answer

What feedback are you looking for about CAR-T cell therapy for myeloma?

CAR-T therapy has shown promising results for people with relapsed or refractory myeloma, especially when other treatments haven't worked. Here's what the data shows:

Effectiveness:
- About 3 out of 4 people had fewer signs of cancer
- 1 out of 3 people achieved complete response (all signs of cancer gone)
- Among those with complete response, 2 out of 3 stayed in remission for at least a year

Important considerations:
- It doesn't work for everyone, and cancer can sometimes return
- You typically need to have tried at least four other treatments first, including immunomodulatory drugs, proteasome inhibitors, and anti-CD38 monoclonal antibodies
- The process takes several weeks and requires hospital stays

Common side effects include:
- Cytokine release syndrome (CRS) - affects 84% of people, though usually mild
- Neurotoxicity (confusion, trouble speaking)
- Fatigue, infections, fever, muscle aches
- Nausea, diarrhea, headache

Most side effects are manageable, and treatments are available to help. The therapy is only offered at certified centers with specially trained staff.

A MyMyelomaTeam member's experience would be valuable - have you connected with others who've been through CAR-T trials?

March 10

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