Your Feed

Filter by
See content from
Back to the latest
I’m wondering if anyone has had a similar experience. Long story short, my HUP oncologist had concerns that my lambda light chain MM treatments (3 or 4 lines) ceased “working” (Diagnosed late Nov 2023) and suggested that I consider CAR-T, to which I agreed. In early Dec. 2025 a PT-CT Total Body Tumor Localization showed reactivation of former FDG avid lesions AND new ones (femur, sternum, rib). Report: extensively distributed FDG avid lytic lesions. I’m now in a “clinical whirlwind”: targeted radiation in a few weeks (I’ve completed “simulation” and tattooing); underwent apheresis on 12/04; and two surprise cavities hidden under caps to be repaired Jan 7th. All the while my lambda free light chains keep rising: (11/4=107mg/L; 11/13=123; 12/2=125; 12/11=140). I fear what they might be by Jan. 19 the date set for CAR-T infusion! Things keep changing, however. On Nov 11, I was told I’d remain on Dara/Carfilzomib which was “keeping things relatively stable which is good. I don't want you off all treatment for too long as I worry you'd progress.” Apparently the labs showed progression! And that plan changed one month later: on 12/11 Dara was dropped and Cytoxin added to Kyprolis, and dexamethasone jumped to 12 mg (another round @ 12 mg coming up on 12/19), after that back to 4 mg. I’m under the impression that I’ll be on Cytoxin/Kyprolis/dex (12/19; 12/26; 1/8) until lymphodepletion chemo (? fludarabine and cyclophosphamide (Flu/Cy), once a day for three consecutive days): 1/14/2026 - Chemo 1/15/2026 - Chemo 1/16/2026 - Chemo Two days off 1/19/2026 - Hospital admission for inpatient CAR-T infusion. Since 12/11 (first dose of Cytoxin) I’ve had diarrhea a few days. Hoping it doesn’t continue for the next month! Question: Are there any specific questions I should be asking my oncologist? (Whom I have great respect for and trust). It seems like such a whirlwind. Anyone have similar experiences? Thanks!
Avatar
pinkAntelope
Multiple Myeloma Discussion • December 17
Talvey side effects
Recently began Talvey therapy and have experienced known side effects of skin peeling on palms and feet, Very dry mouth and loss of taste. Expecting those side effects to subside now that on every four week injection schedule. I recently noticed that one of my thumb nails is becoming loose from it’s bed. Anyone else identified this as a side effect?
Avatar
Suzukiviolin25
Multiple Myeloma Discussion • December 16
Dupixent injections to counter revlimid side effects
Has anyone used Dupixent injections to counter the rash and itchy scalp side effects from Revlimid? Dermatologist from MSK suggested this biological drug as opposed to staying on steroids (prednisone) for longer period. Curious to see how commonly this drug is used and if effective in this setting.