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Rae

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IA

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Tue, Feb 12 12:50pm · Post CAR T cell -- rash in CAR-T Cell Therapy

i'm so glad you posted this! My husband is 9 months post-CAR-T and he has a rash that started on his forehead two or three months ago. Just as you said, it is itchy at times. He saw our primary care doc, who prescribed a topical anti-inflammatory creme, which helped. (He was told to use it no longer than 2 weeks.) But now the rash is back and has spread around the side of his head and into his scalp. I'm glad it's not a constant annoyance, but it would be nice to understand it a bit better. Not that we're complaining! Given the choice between a harmless rash and deadly lymphoma, I think we'd take the rash every time!

Oct 29, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi Greta! I don't have any slam dunk recommendations on good foods post CAR-T. Mark wanted to get away from refined sugar as much as possible. I was afraid he wouldn't gain his weight back, but he did just trying to "eat healthy". I try to get plenty of veggies and fruit, not much in the way of red meat (well, okay once in a while) but quite a lot of chicken and tuna at least once per week. Oh, yes, he snacks on various nuts You'll notice that word "trying" in my third sentence. I don't have this one nailed down. We are definitely a work in progress. I hope Grayson continues to feel better!

Oct 22, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi Greta! I'm Mark's wife. We've been traveling and only just saw your post. I hope your husband is doing better by now. For Mark the two-month ban on driving was almost worse than being in the hospital. : ) Now, looking back, he totally understands it and is glad he was restricted for a while. He says that even now he can tell he's not 100%. Things that used to be automatic when he drove, he has to think about them now. It's a long road but so much better than any other options! Hang in there and take care of yourself! Rae
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