Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
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.
July 2
 · 
Reactions
A MyMyelomaTeam Member

CAR t is supposed to be a one and done procedure. No maintenance afterwards.

July 2
A MyMyelomaTeam Member

Why is this not prescribed from the beginning so that we can get on with our lives instead of being so immunocompromised that it makes living difficult. With indefinite maintenance after SCT.

July 6
MyMyelomaTeam

That's a great question to bring to the community! While personal experiences from MyMyelomaTeam members aren't available here, some helpful context can be shared about what post-CAR-T treatment can look like.

One of the remarkable findings from recent research is that some people may not need ongoing maintenance therapy Show Full Answer

That's a great question to bring to the community! While personal experiences from MyMyelomaTeam members aren't available here, some helpful context can be shared about what post-CAR-T treatment can look like.

One of the remarkable findings from recent research is that some people may not need ongoing maintenance therapy after CAR-T. A study on ciltacabtagene autoleucel (Carvykti) found that 1 in 3 people with relapsed or hard-to-treat myeloma remained in remission for at least five years after a single infusion — with no additional treatment needed. That said, every person's situation is different. Some key things to know about post-CAR-T care:

- Some people may still require maintenance therapy depending on their response
- Reaching MRD-negative status (no detectable cancer cells) is a key goal that can influence whether ongoing treatment is needed
- Your care team will monitor your response closely to guide next steps

The best person to discuss your specific post-CAR-T maintenance plan with is your specialist, as they can tailor recommendations based on your response to treatment.

July 2
A MyMyelomaTeam Member

@A MyMyelomaTeam Member: Good question. So I asked IMF's Myelo:
Why can't CAR-T be the initial first line of treatment for those diagnosed with multiple myeloma?

This was the answer (I like the Changing Landscapes and Promising Developments parts of the answer):

CAR-T cell therapy isn't typically used as the initial first-line treatment for newly diagnosed multiple myeloma patients for several important reasons, though this landscape is rapidly evolving.

Current Treatment Approach:
The standard approach for newly diagnosed multiple myeloma involves starting with less intensive treatments first. For transplant-eligible patients, the leading approach combines a quadruplet induction therapy using an anti-CD38 monoclonal antibody with a proteasome inhibitor and immunomodulatory drug, followed by autologous stem cell transplantation and maintenance therapy.

Key Challenges with First-Line CAR-T
Manufacturing and Access Limitations
• CAR-T cell therapy involves complex manufacturing processes that can be expensive and time-consuming
• Manufacturing can fail in some patients (about 8.4% in studies), particularly those with certain risk factors
• Limited access and availability across different treatment centers worldwide

Treatment Complexity
• CAR-T requires specialized infrastructure and expertise for administration
• Potential for serious side effects including cytokine release syndrome and neurotoxicity that require careful monitoring
• The therapy involves collecting patient's T cells, engineering them, and re-infusing them back

The Changing Landscape:
However, this paradigm is shifting. Research shows that CAR-T therapy is more effective when used earlier in treatment rather than after multiple relapses. Real-world experience demonstrates even more impressive outcomes when CAR-T is used in early relapse settings.

Promising Developments:
• CAR-T is now FDA-approved for use as early as first relapse
• Clinical trials using CAR-T for newly diagnosed patients are already ongoing, particularly in China, with very promising results
• The potential for a single CAR-T infusion to provide sustained deep responses without requiring maintenance therapy is especially attractive
The field is moving toward using these powerful immunotherapies earlier in the treatment course, and it's likely that myeloma therapy will take a major leap forward with the introduction of immune therapies in patients with earlier-stage disease.

July 6

Related Questions

View All
A MyMyelomaTeam Member asked a question 💭
Asheville, NC

A MyMyelomaTeam Member asked a question 💭
Blue Rock, OH