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Post CAR T cell -- rash
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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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?
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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1 ReactionHello @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?
I am glad I found this site. Mid August, I presented with a dime sized welt on my thigh that I treated with fluocinonide almost to complete resolution. On September 28, 2024 a hivey looking rash started to appear on my arms and legs. I treated with two 5 day rounds of 50mg prednisone. I finally, reported this to my oncology team who referred me to a dermatologist who biopsied the rash yesterday. He suspects CAR T involvement. Will be very interested to see the results of the biopsy. Btw I received the Prevnar20 pneumococcal vaccine the day before the rash presented. The dermatologist suspects that this may have been a trigger but not a direct cause. I am now being treated with betaderm and UVB light therapy. Very interesting!
Hi @kirkwilliams2049. Welcome to Connect. How long ago did you receive your CAR-T therapy? Does your oncologist feel this is GVHD related to the transplant?
I was infused Feb 20. I am part of a clinical trial where the CAR T cells are engineered locally in Edmonton. Alberta, Canada. Standard of Care currently calls for engineering in San Diego? CA. I am not familiar with the term GVHD. I have been with the same oncologist since 2015 when I was first diagnosed. I relapsed last October. Hence the CAR T therapy.
Graft vs host disease isn’t a common occurrence with CAR-T because of using your own re-engineered cells. I only asked because I wasn’t sure if you’d previously had a bone marrow transplant or not. There are some cases of GVHD with patients who have had CAR-T following a bone marrow transplant/stem cell transplant. GVHD is common with people who have had stem cell transplants using donor cells. The new immune system doesn’t recognize the body (host) and will start attacking the body with any number of nagging issues such as rashes.
There’s a growing number of CAR-T recipients in the forum. It would be great if you’d like to tell your story and share your experience along with fellow members. Here’s a perfect place to start:
CAR-T Cell Therapy: Introduce yourself and connect with others!
https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/
You mentioned you relapsed in October last year. If you don’t mind sharing, what was the underlying cancer?