I recently finished my step up dosage of Talvey and experienced all the side effects of loss of taste, skin peeling, dry mouth, skin rash with itching. As I was getting ready for another dose in 2 weeks I came down with vertigo and gait imbalance. My doctor took me of Talvey and I am still dealing with vertigo and ataxia. Has anyone experienced this? Talvey can cause neurotoxicity to the cerebellum.

I’ve been on Lenalidomide 15 Mg 21 on 7 off for 8 months. Have constant yellow dysentery on the 21 days on. Tapers off on the 7 off. Finally had a new doctor prescribe Colestipol tablets twice a day. Some relief the first month. They cut back the Lenalidomide to every other day but Colestipol not working. Is this a sign I should stop the Lenalidomide? What have others experienced.

Has anyone tried an Oncology Acupuncturist for BIPN? Do these nerves in the legs and feet ever regenerate? I refuse to take another drug…Gabapentin was prescribed.

Experiences with this drug

I was diagnosed withMM in January, 2024. Followed by 12 weeks of induction therapy and then ASCT in June. Took Revlimed as maintenance therapy until June, 2026 when I became neutropenic. Restaging at 24 mos showed healthy bones, no kidney issues and full remission. I am very active. Transitioned to Darzalex Faspro and remain on weekly injections for 4 more weeks, then a month biweekly, then monthly. Question I have is that I seem to be more sensitive to heat while exercising and my heart rate is more elevated than previously. I sometimes have a headache during the week. This is new since starting Darzalex.

I can never find our meeting on the website

I am enrolled in the Sim0500 trial which is a Trispecific targeting GPRC5D–BCMA–CD3 . It has been giving unbelievable results. My myeloma numbers were normal within 8 days of getting my first injection . It has not been without trials. The skin side effects as well as the taste changes are typical of GPRC5D agents. To me this is a miracle as my myeloma was very aggressive after relapsing in 9 months after my Car-T. I move on now to my six months of treatment. The side effects have lessened but are still there but tolerable. My labs are still good. My PET scan has shown a dramatic decrease in the myeloma lesions but they are still there. I will get my bone marrow biopsy next month. I am hopeful.

Has anyone relapsed while on TALVEY, and if so, what treatment did you decide upon next? Did you add a med to TALVEY and continued on it or changed treatment altogether? Thank you for your feedback. I'm trying to decide what to do next.