Failed Treatments Lead To CAR T Trial

After years of going through scanxiety, I have finally graduated to labxiety, transitioning from bi-annual scans to just having labs. I am about to hit my six-year anniversary of my day-zero participation in a clinical trial using CAR T Cell Therapy for an aggressive blood cancer.

Actually, it was the second day-zero in eight months' time for me. I went through an autologous stem cell transplant in September of the year before, which failed after 6 months, just as my chemo regimen did prior to that. I was really in trouble as I was refractory, and no modern treatments worked for me.

The turning point: Seeking a second opinion

My asking for a second opinion at Dana Farber Cancer Institute changed the course of my treatment path. From the beginning, they directed my treatment plan, yet I was able to get my chemo close to home, an hour and a half away from Boston. When I relapsed, they had me at the facility at Brigham and Women’s Hospital for the stem cell transplant, which adjoins Dana Farber and specializes in cancer care. When I relapsed again, they had a trial for me there as well.

Another factor for me entering the trial was seeing the Whitehead family with Emily testifying on Capitol Hill seeking FDA approval for this new breakthrough process, CAR T-Cell Therapy, and how it saved her life from leukemia at 6 years old. She is the reason we have CAR T today. That night, I put her name in my phone's notes with “CAR-T.” I said that this process may be ready for me years from now if I eventually relapse from the stem cell transplant.¹

Relapse and considering CAR T cell therapy

Well, 6 months later, my scan came back with devastating results. The blood cancer was back. It was a crushing blow; I could not believe after all I had been through, the cancer had come back again.

I was immediately back down at DFCI, where I said to my oncologist, "You told me, “people do not do very well” if their transplant fails, and now mine has failed." He said, "Well, there have been some changes since then. You could do an allogenic "allo" transplant, or you could be one of 50 people to enter a clinical trial for CAR T-Cell therapy." I immediately remembered seeing Emily’s story and said yes, I would volunteer to enter into the trial.

With CAR T 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. In my case, the T-cells would now recognize and kill the CD19 cell that carried my cancer.

Reflecting on the journey and future hopes

Two years later, the FDA approved the process for FL based on the trial, just as happened for my inspiration Emily Whitehead. There are currently over 1,300 CAR-T clinical trials, and 6 CAR T drugs have FDA approval.¹