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A MyMyelomaTeam Member asked a question 💭
Charlotte, NC
March 24
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Answer Summary

Members shared their personal experiences with Talvey, offering helpful insight for someone considering the treatment for multiple myeloma.... Read more

Members shared their personal experiences with Talvey, offering helpful insight for someone considering the treatment for multiple myeloma. Several members described common side effects including taste loss, nail loss, dry mouth, and rashes, with taste loss being the most consistently reported challenge, though many noted it improved over time. A recurring theme was that despite the difficulties, Talvey proved effective for many, with multiple members achieving MRD negative status or using it successfully as a bridge to CAR-T therapy.

A MyMyelomaTeam Member

Hi! I was on Talvey for 8 months as a bridge to CAR-T . It truly really worked get my MM ready for the treatment. It’s a hard drug to take. I did lose all my fingernails ,one by one!That actually wasn’t bad. The worst side effects for me was Taste loss. It’s very diificult to eat when you can’t taste. I also found it depressing. I did adjustments .M-Spike was 0 ! My Bone Marrow biopsy was Negative for Myeloma cells. It really worked for me . I had my CarT infusion was Feb 9 th . I have done very well. Everyone is different. I was on 4 different medications over the years . Talvey worked for me. Good luck!

March 24
A MyMyelomaTeam Member

Yes I've been on Talvey along with Dara for 26 months. In the beginning I had a rash, lost my nails, dry mouth, and loss of taste. All have been resolved except loss of taste which has been slow to come back. It has been worth it as I've been MRD Negative for 2 years.

March 24
A MyMyelomaTeam Member

Hope the very best for you! Yes my taste buds started kicking back in about 4 months after CAR-T . I was started on Talvey in August 2025-January 2026 . I think my taste buds did adjust while on Talvey . My diet changed. Tried to eat adequate protein . The CAR-T team will walk you through step by step.They will work through every Medication in detail. Different institutions do steps differently but also similar. Strict guidelines. They Tested everything!

June 30
A MyMyelomaTeam Member

Yes. I had Talvey about 2 weeks prior to my CAR T treatment 2 yrs ago. No CRS side effects but I did have severe headaches for about 6 hrs Had to clear a head scan before taking any meds due to fear of brain bleed. No issues after that.

March 24
A MyMyelomaTeam Member

My oncologist told me yesterday that there is an international MM convention in Sweden in June and clinical trials with Talvey will be discussed. Anxious to hear the outcomes.

April 25

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