Becoming CAR T Man

It was a whirlwind of activity once I entered the CAR T trial for my blood cancer. I was struggling with recurring pneumonia since the stem cell transplant. My ears were so full of fluid that I could not hear anything. My brother, my caregiver, had to translate for me and help me get from place to place. I was put through every medical test known to man, it seemed, in one day: PET scan, CT, brain scan, ultrasound of my heart, bone marrow biopsy, lung capacity tests, and more. They called me 2 days later and said I was accepted into the trial.

The CAR T cell-therapy experience

I then went again through the apheresis process, where they collected my T-cells. This time, a courier was waiting. Once my T-cells were collected, he signed off on the package and flew them to a lab in California. My trial nurse emailed me the next day to tell me the cells were in the lab and being genetically modified.

With CART-cell-therapy, they genetically modify your T-cells with a deactivated virus. Then, they multiply them by the millions in the lab and reinfuse them into you.¹ In my case, the T-cells would now recognize and kill the CD19 cell that carried my cancer.

When I realized my blood would be genetically modified, my son and I came up with the character CAR T-Man, sharing him on social media. This is who I would become to defeat the cancer villain. I was trying to be confident going into the trial.

I have been in touch with several cancer patients who are doing CAR T, and they are now doing the process outpatient. They are not having any side effects and are receiving a complete remission. There are now labs on the East Coast making CAR T cells.¹ Amazing progress since my trial.

Challenges and side effects during treatment

I will share a bit of what I went through, which resulted in a complete remission for me and the drug Yescarta gaining FDA approval for FL for all. My stay was a mandatory 7 days. I said to the lead nurse when I arrived, "I will be out of here in 7 days!"

Eighteen days later, I was wheeled out, 30 lbs lighter, a shell of myself. I could not write my own name and could barely walk from one room to another. On day 4, the CRS hit me: cytokine release syndrome.²

A cytokine storm hit within my body, grade 2. High fevers, chills, body aches, neurological issues where I was in an altered mental state for days on end, hallucinating at times. I could not answer simple questions or perform simple motor skills. I was emotional, crying a lot, yelling out for it to stop. A brutal experience that I would not wish on anyone.

I was scanned at the 30-day mark, and the cancer was gone, a CR, complete remission. Unbelievable, I thought. Then at the 60, 90, 120-day mark, and then every 3 months, then to every 6 months till now. A lot of scans!

Reflecting on the journey and future hopes

Two years later, the FDA approved the process for FL based on the trial. There are currently over 1,300 CAR T clinical trials, and 6 CAR T drugs have FDA approval.¹

I carry the torch for the efficacy of this drug against follicular lymphoma. Milestones like this one are a celebration for us all in the fight against cancer. I believe CAR T is leading the way to a cure for cancer. It has done so much for me and my family when no other treatments had worked. I am very grateful for the medical science that has saved me.