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

In February ‘24, I was diagnosed in the Arizona Mayo Clinic with LDBCL in a progressive stage. I had little to no symptoms. I was 79. I was offered a trial of applying CAR-T as the first line therapy vs. the standard of 6 hits of chemo. Choosing the trial was apparently the right decision. I went through the steps in preparation for the infusion of my strengthen T cells including one hit of RCHOP chemo and several short hits prior to the trial hospitalization. The CAR-T infusion process (2weeks in the hospital included 5 days in ICU) took 16 days; and another 2 weeks in an intensive PT, OT, facility to regain my strength as most of that period I had been bed ridden although never in pain nor experienced any nausea.
I’m not sure if the rehab was part of the trial but my total month long process was definitely successful. My hematologist soon told me I was in complete remission. That was two years ago and the remission has been maintained. Fatigue was the biggest challenge but exercise was essential. Nearly two years later my immune system had/has not recovered enough though. Therefore, my hematologist has prescribed a series of once-monthly infusions to strengthen that. Next week will be my 2nd visit.
Three months ago I contracted a pneumonia which developed into severe sepsis. This latest illness has caused more impactful fatigue than the CAR-T. My hematologist thinks my low immune system allowed me to contract the pneumonia. Therefore I am currently recuperating from the combination of pneumonia and the sepsis. It is complex but am hopeful the infusions will restore my strength and stamina back to where I was one year after CAR-T. At my age of 81, I still feel optimistic more often than not and realize aging requires much more maintenance than my 60’s or 70’s to begin with. So, I’m working at enjoying my life at my best possible ability.

@loribmt Thank you for your warm welcome and encouragement. I hope I have the kind of positive results I'm reading about here...I'll definitely let you know!

@amywells Welcome to the CAR-T group! CAR-T cell therapy has been rapidly gaining ground in the treatment of various types of cancer, including ovarian. That’s a huge breakthrough. And while you found the initial side effects a bit more challenging than the frontline chemo you had for your cancer treatments, this CAR-T procedure may help ensure that you will no longer have to worry about the cancer or any more chemo.
Wishing you well on your recovery! I think you’ll be encouraged with comments from @kirkwilliams2049 @aalietz @4health4bonnie and others who have shared their success stories with their CAR-T journeys.

@amywells
Wife had CAR-T therapy for DLBCL in her brain stem in May 2025 after 4 Chemo treatments of methotrexate and 2 immune suppression chemos in preparation for for the CAR-T infusion. She had a low grade fever for a few days and her most troublesome side effect was the “brain fog” you experienced. This has improved with time (now 7 months out) and is no longer an issue.
She remains in remission with now indications of a mass after 3 brain MRIs and is feeling excellent!
We are very thankful that our Oncologist at the Abramson Cancer Center in Philadelphia prescribed this treatment.
We wish you similar success!

I had CART therapy for DLBCL 2 years ago this month. I hope it is as magical for you as it was for me!

Good luck and best wishes! And remember: Positivity is the best therapy.

I’m just connecting with this discussion which I see took place six years ago! I did a CAR-T trial in January for stage 3 ovarian cancer. First, four days of chemotherapy to knock out my immune system, then the actual infusion of my modified T cells two days later. I experienced low level CRS although it didn’t feel low level: fever of 101.9, vomiting, intense shaking. Two and three days later I had injections of interleukin (IL-2) which caused more inflammation, intense bone pain and a generalized rash. Now three weeks post infusion and just starting to get some energy back. I’ve had significant mental fogginess which has made it difficult to read or do much, but that is starting to clear. Personally, this was much more difficult to go through than front line chemotherapy, however I have no regrets. I will have CT scans in two weeks and that will show the outcome…nervous about this.

@floridaed Wishing you the best! Positivity does help. I trust you’ll be healed. Please keep us posted.

@kirkwilliams2049 Thank you for your wonderful message.
Merry Christmas to you.

@floridaed I am approaching my 2 year anniversary of my CAR T therapy in February. It was like magic! Interesting that you are “reaching out to your receptors” . In addition to CAR T, I did Ayurvedic healing with a guru in London (remotely). I see this as the same thing. I also meditate and use the energy that I acquire for healing. My motto is: Positivity is the best therapy.

I know you will do well. Good luck and best wishes! Oh and Merry Christmas!

At Mayo now. Had my CAR T infusion on Tuesday. Nurses signed a card wishing me a happy 2nd birthday.
So far I feel pretty good. I am 72 hours out and have only a slight fever. My ANC is low - which is to be expected.
I'm praying a lot and asking the Holy Spirit to protect and heal me. Doing some visual exercises as well. Imagining those receptors seeking out the cancer cells in my body and destroying them.