CAR-T Cell Therapy: Introduce yourself and connect with others

Just stay positive. Positivity is the absolute best therapy. I think of it this way: I only have the current moment to live. Future moments may or may not come so I take this moment and live it in joy and happiness.

Thank you for sharing your story, it gives me renewed hope!

I was infused with CAR-T cells this February past. The final stubborn spot on my duodenum was completely obliterated 30 days later. I spent 2 weeks in our local cancer facility being observed for neurotoxicity and cytokine syndrome either of which never materialized. As a caregiver just be prepared to make trips back and forth to the hospital/care centers and hope for the best. This treatment is really quite magical. I started camping and golfing again in May. Still awaiting the return of my immune system - very small price to pay. I am doing an ivig transfusion today incidently.

Hello,
My husband’s “new and improved” cells are going to be re-infused in a couple of weeks, He has had CLL for years, in early May—in the midst of selling a house, downsizing to a new build a state away, and on the heels of losing my father to cancer 4 months after he was diagnosed, we learned that my husband has Richters Transformation. His CLL had morphed to an aggressive B-cell lymphoma. Typically the outcome is not good, so the literature says.
Fortunately our new home is in St. Augustine and he sought continued care at Mayo in Jax. But after watching this cancer laugh at RCHOP and GEMOX chemotherapy regimens, continue to grow in size and number, “aggressive” is very real and I’m very thankful and excited for the CAR-T cell therapy…and I have a big knot in my stomach at the same time.
Any tips for getting through this phase as a caregiver?
Denise

Thanks Colleen - The rash is doing much better. Being treated with prednisone, betaderm and light therapy. Can't wait to get off the prednisone.

My dermatologist felt that there may be CAR-T involvement. Apparently, there are cutaneous cells in some people which have the CD19 marker which is the target of the CAR receptor. He biopsied and found no evidence of this.

Thanks for asking.

Welcome @kirkwilliams2049, I moved your introduction here:
- 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/
I did this so you can connect with other members who have experience with diffuse large B cell lymphoma (DLBCL) and/or CAR-T cell therapy, like @valerie912 @taichung0812 @grandpabob @secglc2 @annberkowitz @judyhelensmith2022 @gregolson @sunillall and others.

Any update on the rash? How are you doing?

Just introducing myself to this group. I was diagnosed with DLBCL first in 2015 at age 65. I had 6 sessions of RCHOP to remission the following April. I relapsed last October, had 3 rounds of RGDP until CART therapy which completed in February. I was declared clear March 20. It has overall just proved to be an inconvenience with few side effects. Chemo isn’t fun but it is certainly tolerable, at least for me. This past week I met with a dermatologist to discuss an itchy rash that appeared about a month ago. We did a biopsy yesterday to determine the cause. He feels that there may be CART cell involvement. We will see. Happy to discuss details with anyone in this group.

Hi Barb,

I was the caregiver to my mom who went through CAR-T (and a Stem Cell transplant, and every chemo you can imagine). I was there every step of the way and more than happy to help with any questions or thoughts. Fellow native ND gal myself 🙂

Dana (@sunnyd)🌻

Welcome @barbarneson, I'm sure your team at Mayo Clinic directed you to this helpful resource for CAR-T caregivers.
- Caregivers for BMT, CAR-T, and Hematology https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/

Hearing from other caregivers to know what to expect really helps. @ntsimpson, I know that you offered to contact other caregivers personally, but I might suggest that by sharing here, you can help many.

I'm also bringing in fellow CAR-T caregivers like @burchfield @ntsimpson @charlenekeogh @raemark2010 @greta_k @valerie912 @smokie @ruttgerbay @sunnyd @gregolson to rejoin the conversation.

So, back to you, Barb. You mentioned that you and your husband are home for a 2-week break before heading back to Mayo Clinic for evaluation and transfusion of his "energized cells". You'd like to hear from other caregivers to understand more of what you can expect. Do I have that right?

Barb,
If you want to reach me directly, by private message.
There are a few spouses of CAR T recipients online.