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

Speaking only from my own experience, everything is a breeze from this point on. My oncologist told me that they are planning to do CAR T on an outpatient basis. The incidence of cytokine release syndrome and neurotoxicity are apparently exceedingly rare. I had a persistent node on my duodenum that completely disappeared by my 30 day scan.

In time you will look back and say that this was only an inconvenience and your daughter will say that the past 10 years have been the best of her life. And she will thank you for being there for her.

Remember my motto: Positivity is the best therapy.

Best of luck and best wishes!

Good luck with your daughter’s infusion and journey to a cancer free future as I believe Car-T will provide.
My wife was diagnosed with large B cell non Hodgkin Lymphoma in lymph nodes in her neck in the fall of 2023. After 5 R-CHOP chemo treatments and 17 days of radiation treatment she was declared cancer free in early 2024. However in January of 2025 she was experiencing rapidly depleting speech, visual and balance issues. An MRI found 3 spots in the base of her brain and brain stem, in areas that could not be biopsied.
The Oncologists at University of Penn assumed it was a metastasis of the neck Lymphoma. After 4 chemo treatments of Methaltrexate (SP?), which took a toll on her kidneys, they decided to offer her the CART-T treatment. The published potential side affects gave us reason to be very concerned! We decided to proceed anyway and I can now tell you it was amazing in regard to how it completely eliminated all signs of any masses in her brain.
We stayed in a suite close to the hospital for 4 weeks and had blood drawn every other day. She had a low grade (<100) fever for a few days and minor “fuzzy brain” periods but no serious discomfort. She is now 1-1/4 year since the infusion of the modified T cells and has had 4 completely clear MRI brain scans and is feeling great at age 85%+!
Good luck and God bless to you and your family!

Hi Colleen - I keep losing my replies but will try once more..
My first infusion went very well. In fact my labs in preparation for the second infusion showed that the second one wasn’t needed. I am improving from the pneumonia impacts in plateaus and restarting exercise on my stationary recumbent bike.
My stamina and outlook is improving enough that we are planning a three weeks vacation to visit our grown children and friends where we used to live in Northern California next month. We flew there last year but will make it a road trip this time.
The results from the ongoing tests in the Car-T trial have shown consistent improvement over the two years with the exception of the pneumonia event. My initiative is back and making plans again is possibly the best medicine.
I would like to read other Car-T experiences as the first line therapy because it used to be applied as post chemo and relapses. Its main issue for me was the extreme fatigue afterwards. While fatigue improved my immune system was lagging thus needing infusions. The pneumonia though threw a wrench in my recovery progression. But I am feeling much better and getting ready to be involved with an enjoyable lifestyle again.

@colleenyoung - I was writing my unfinished/edited reply on my iPhone but interrupted by a call. Not sure how to resume or find that reply.

@carolm25, I'm just catching up with your story now. Pneumonia and sepsis are no walk in the park. Your optimism and gentle fighting spirit come throuh in your words.

How did the second infusion go last week? Are you noticing any positive effects yet? What brings your joy in life?

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.