Post CAR T cell -- rash

Posted by greta_k @greta_k, Mon, Feb 11 5:03pm

I was wondering if any patients have experienced a rash post CAR T cell? My husband is 4 post post treatment and has been starting to breakout in a red rash (itchy at time). It is not too severe and we have told our hematologist but we were just wondering if others are having any similar symptoms.

I have had no rash of any kind Greta. Six months since infusion.

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Dave had a slight rash around his neck for one-two days during CAR-T, but it disappeared and he's never had another.

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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!

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@raemark2010 ; @annmillercarr @grandpabob Thanks so much for the replies. It was good to know that others have had skin issues. He has been using the cortizone cream and the Avenno cream for eczema. It is keeping the itching down but we have an appointment next month so I will circle back to let you know what we learned. Not a scientific answer but I feel like the immune system is just rebooting– hopefully just the good parts and not the cancer parts! Thanks again. Greta

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@greta_k

@raemark2010 ; @annmillercarr @grandpabob Thanks so much for the replies. It was good to know that others have had skin issues. He has been using the cortizone cream and the Avenno cream for eczema. It is keeping the itching down but we have an appointment next month so I will circle back to let you know what we learned. Not a scientific answer but I feel like the immune system is just rebooting– hopefully just the good parts and not the cancer parts! Thanks again. Greta

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Hello Greta, I earlier stated i did not get a rash however in the lastFew weeks i have a few. Did you get a resolution?
I will be seeing my doctor shortly but would be interested in your learnings.
Thanks. Bob
Would also be interested to know if @raemark2010 has found anything more.

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@grandpabob

Hello Greta, I earlier stated i did not get a rash however in the lastFew weeks i have a few. Did you get a resolution?
I will be seeing my doctor shortly but would be interested in your learnings.
Thanks. Bob
Would also be interested to know if @raemark2010 has found anything more.

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Bob, Sorry for my delayed reply. Graydon has had some resolution but it seems to come and go. I feel like we got it under control now. He found the Aveeno oatmeal bath worked along with the eczema cream. I also got new detergent for sensitive skin and without dyes and scents. No dryer sheets or fabric softener either. We go for scans next week so will will let you know what the medical advice is for these flare ups. Greta

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Thanks so much for the information Greta. We had started with changes to laundry detergents and such. Will look into the Aveeno and eczema cream. Tried Benadryl for the itch which helps.
Bob

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@grandpabob

Thanks so much for the information Greta. We had started with changes to laundry detergents and such. Will look into the Aveeno and eczema cream. Tried Benadryl for the itch which helps.
Bob

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This is Mark Wilson, CAR-T patient for about a year. I too apologize for not responding sooner. My rash eventually went away pretty much on its own, and most of the time wasn't itchy. So I was mostly spared; itching is no fun! I'm hoping that as we move away from winter, my dry, flaky skin on my forehead and head will subside.

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Hi Mark, appreciate the reply. Interesting,mine are not continuously itchy either though more than not.
Take care.

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