Post CAR T cell -- rash

Posted by greta_k @greta_k, Feb 11, 2019

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.

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@karenkkm

Hello, Karen here & I am 1 year out of carT treatment & am so very grateful for it! I have had periodic itching and found all your comments very helpful. I have started using CeraVe itch relief per my GPs suggestion and am happy with it. This morning I woke up with two dime size welts above my knee & the area was itching. They were noticeably raised. I put on the CeraVe and they appear to be better. Has anyone experienced welts (not blisters)
Thanks

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Hello @karenkkm, Welcome to Mayo Clinic Connect. I agree with you that CarT is something to be grateful for.

I would have to say that I have not had any welts however have had many different kinds of rashes. In all the rashes I had I treated them with standard over the counter lotions which did help a lot. I am now five years post treatment and can say that the rashes have dissipated to a great degree. At this point I am thinking they are simply a part of life.

Is the CeraVe continuing to give you relief?

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@karenkkm

Hello, Karen here & I am 1 year out of carT treatment & am so very grateful for it! I have had periodic itching and found all your comments very helpful. I have started using CeraVe itch relief per my GPs suggestion and am happy with it. This morning I woke up with two dime size welts above my knee & the area was itching. They were noticeably raised. I put on the CeraVe and they appear to be better. Has anyone experienced welts (not blisters)
Thanks

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Hi--
I'm one year out from a successful CAR-T. A few months ago I had a rash on the back of my neck. My dermatologist said it was shingles. Not sure it was, but could be. Below my scapular on right side and on head and it marched all along the back of my neck. Itched like crazy. What has helped me the most is good ole calamine lotion. I still apply it twice daily to my neck. My oncologist said i was too far out for skin issues., BUT if the dermatologist biopsied it to send some to them so they could look at it too. I'm not really sure they any of the know what it is. So many odd maladies but thankfully nothing serious.

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@karenkkm

Hello, Karen here & I am 1 year out of carT treatment & am so very grateful for it! I have had periodic itching and found all your comments very helpful. I have started using CeraVe itch relief per my GPs suggestion and am happy with it. This morning I woke up with two dime size welts above my knee & the area was itching. They were noticeably raised. I put on the CeraVe and they appear to be better. Has anyone experienced welts (not blisters)
Thanks

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Hi @karenkkm, I'm certain @grandpabob will join me in welcoming you. Congrats on the successful CAR-T treatment. Are the itching and welts a new symptoms for you? How are the welts today?

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Hello, Karen here & I am 1 year out of carT treatment & am so very grateful for it! I have had periodic itching and found all your comments very helpful. I have started using CeraVe itch relief per my GPs suggestion and am happy with it. This morning I woke up with two dime size welts above my knee & the area was itching. They were noticeably raised. I put on the CeraVe and they appear to be better. Has anyone experienced welts (not blisters)
Thanks

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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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@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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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

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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@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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@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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