Community post
Post CAR T cutaneous lymphoma
I had CAR-T for multiple myeloma in July, 2024, and I have been in remission since. However, after developing many ugly sores on my leg early this year, I was diagnosed with Car T associated anaplastic large cell cutaneous lymphoma with cytotoxicity and rapid propagation. I am being treated at Moffitt for this. To say this is rare is an understatement. There are approximately 25 cases in existence. Period. It is a very serious, if not grim, diagnosis. Due to it's rarity, there is scant data on survivorship. I would like to plan out the time I have with family events, but I have no idea what the range of my survivorship might be. Has anyone received a similar diagnosis, or have community information on what my famiy and I might expect? Thanks
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