Anyone DLBCL return 30 days after CAR T transplant?

Hi @mwrw. While you’re waiting for members @kirkwilliams2049
@floridaed and @aalietz and others who have undergone CAR-T therapy for their Diffuse large B-cell lymphoma (DLBCL) to comment, I want to welcome you to Mayo Connect.

CAR-T Therapy is becoming a promising treatment for different types of lymphoma, including DLBCL. Did you or a loved one have CAR-T therapy for lymphoma? Are there indications that this treatment didn’t take the first time?

I am pleased to share my experiences and answer questions.

Quick note - 2 1/2 years after CAR T my oncologist declared me cured. I never thought that would happen.

@loribmt
My husband had CAR-T treament for Lymphoma. He was in remission for 30 days. When it came back in passed 45 days later.

Hi @mwrw, From what I’m understanding about your husband’s situation, after having CAR-T therapy for lymphoma, he had some indications of lymphoma on his labs again after 30 days. But now he’s in remission again after 45 days? Looks the CAR-T therapy is working!
Are his doctors encouraged by this outcome?

@loribmt No he passed away in 45 days

He passed away 45 days after 30days in remission after CAR-T TRANSPLANT

Oh @mwrw I am so very sorry for your loss! This is tragic news. Your husband and you must have been through so much with his lymphoma over the past couple of years. CAR-T therapy has been helpful to so many patients with lymphoma. But sadly, in spite of everyone’s best efforts there can be some cases that don’t respond as anticipated.

Each person’s case is unique. We go into these potentially life saving procedures with high expectations and hope, making it incredibly sad and disappointing when they don’t go as planned. I’m sure your husband’s CAR-T team is devastated by this news.
Knowing what a difficult time this is, my thoughts are sympathy are with you and your family. ❤️

@kirkwilliams2049
What were your side effects after your infusion and what are the most helpful things a caregiver can do? I am going to be the caregiver for my daughter.
Thanks!

I had zero side effects. My hobby is programming and I wrote a bunch of code while I was in the hospital for observation. The worst part was being awakened at 5 in the morning for bloodwork. I seriously felt bad about taking up a bed in the cancer ward.

Although there was an incident when I went for a walk outside after 11pm. I caught hell from the security guard for trying to break back in (I didn’t see the buzzer beside the door)🙂.

My daughter had her infusion yesterday - 200 million car t cells fighting her lymphoma!
Today she ran a 102 fever and had a very bad headache but by 2 o'clock her temp was normal,headache gone but still tired...but she did feel like eating,yay. Keep everyone posted about
the next few days🙂.
Andrea