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BobH1
Multiple Myeloma Discussion • December 18
Headed for CAR-T but Worried about “Interval”between now and Jan 19, 2026
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!
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