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A MyLymphomaTeam Member asked a question đź’­
Woking, UK

It might be quite niche but I am now on this after unsuccessful CAR T therapy. Would like to hear people's experiences of it?

September 1, 2024
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Answer Summary

Members rallied around someone exploring bispecific antibody treatment for DLBCL after unsuccessful CAR-T therapy, offering prayers,... Read more

Members rallied around someone exploring bispecific antibody treatment for DLBCL after unsuccessful CAR-T therapy, offering prayers, encouragement, and optimism about this emerging option. Several members shared practical insights, including a YouTube resource explaining bispecific antibodies in detail, personal experience with mosunetuzumab for follicular lymphoma achieving partial remission, and firsthand knowledge of epcoritamab as a third-line treatment approved in the UK, with one member noting initial challenges with cytokine release syndrome that eventually settled. A recurring theme was hope in pioneering new treatments, viewing participation as contributing valuable data for future patients, and the shared belief that persistence and trying every available option can lead to breakthroughs.

A MyLymphomaTeam Member

I hear that Chris, we are all genuine guinea pigs and having put myself up for medical research treatments which I am obviously praying that the meds work furthering the cause of fighting this and other disease which is important to me.

I hope your journey is success_full

September 3, 2024
A MyLymphomaTeam Member

Thanks Barb, I'm actually quite optimistic for this treatment. The more I read about Bispecifics the more I think they have at least as much potential as car t as a third line treatment. It's very new so it's hard to find info but it also has a lot of advantages (for example it's an off the shelf treatment so doesn't need weeks and months of being tailored to the patient in a lab, you just inject it and it starts working).

I like that it's new also because I feel my treatment, even if unsuccessful, will help doctors understand the treatment better and can adjust and improve for those that will get this after me!

September 3, 2024
A MyLymphomaTeam Member

That’s great👍

September 18, 2024
A MyLymphomaTeam Member

Thanks Lynda, I'm on Epcoritamab which is allowed in the UK as a third or fourth line treatment.

I had a rough start with Cytokine Release Syndrome after my first couple of doses but things have settled down now.

I don't know if it's working or not but my disease doesn't feel like it's progressing at the moment which is encouraging!

September 18, 2024
A MyLymphomaTeam Member

I was on mosunetuzumab for follicular lymphoma. A bispecific trial. I was recently told by my oncologist that it is less effective for DLBCL. I am in partial remission. It got rid of all my tumors but one! I would try whichever bispecific that works best on DLBCL👍. Lots of research for 3rd line treatment and FDA approved on some.

September 18, 2024

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