About a year after CAR-T, I developed Cutaneous T-cell lymphoma on my leg. It contained CAR+ genetics resulting from CAR-T. It was resolved with Brentuximab and localized radiation. Just as it was resolved, MM reappeared. On Talvey for that. Then a lump on the pad of my thumb was biopsied as CAR+ CTCL. Anyone seen anything like this?

I’ll be staring Isa-K/d soon. Seeing doctor tomorrow. Any advice on what to ask doctor and what are the preparations, what side effects to expect.

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my specialist was all excited about this, since i might be relapsing soon....but my local oncologist said that it requires 10 days in the hospital in Seattle.....i live 2+ hours from there. Anybody out there has had this Tx? Any comments?

I’ve been taking Darzalex for six years now. The last two treatments I seem to have developed GI issues: excess gas/bloating, gut gurgling, appetite suppression, and I’ve vomited once each time - from the next day to 7 days later. The evening is the worst. It does seem to take about a week before I start to feel normal again. I do take Benadryl and Tylenol before treatment and Benadryl each night for about 4-5 days after. I have not used any steroids with my treatment for over a year. I also take Zyrtec daily for non-allergenic rhinitis. Additionally, each treatment seems to trigger some sinus issues for a short time. That side effect has been ongoing for quite some time. Am I the only one? Does anything help you?

Has anyone on Talvey experience vertigo and ataxia? if so how long does it take to recover. I noticed a week after receiving my 4th step up dose the vertigo and ataxia. I still have the symptom but slightly better. I lost my sense of taste after the 2nd step up dosage. How long does it take to recover? I am off the med. due to the side effects.

Anyone here diagnosed with primary Plasma Cell Leukemia. Diagnosed recently and doing immunotherapy. Stem Cell transplant to follow, if numbers keep falling. Anyone else with this rare disease?