Quinn Johnsen: One year after TCR-T.
Quinn Johnsen was a young industrial designer in Toronto, an avid skier, the picture of health. That was before a sudden battle with synovial sarcoma beginning in 2020 that threatened to take everything away from him.
But today, Johnsen’s life is returning to normalcy, less than one year after he underwent personalized immunotherapy with afami-cel, the first TCR T-cell therapy approved by the FDA.
As Quinn looks forward to the one-year anniversary of his successful experience with TCR-T, he is also learning how to be a patient advocate to build awareness and to help others with cancer access these life-saving treatments.
“It’s completely surreal to look back on where things were three years ago and where they are today,” Johnsen said. “What I talk about with my doctors has completely shifted. I’m just amazed. I’m incredibly grateful. I feel so lucky and fortunate to be able to share a positive story for a change after what has been a pretty tumultuous few years.”
Johnsen’s cancer diagnosis
Johnsen’s long and difficult battle with synovial sarcoma began after a skiing trip near his hometown of Calgary in 2020, when the then-31-year-old started experiencing surprisingly intense fatigue.
He checked into the hospital after returning home to Toronto, suspecting that he was dealing with a case of long COVID. But within 10 minutes of taking his blood, doctors realized that something was very wrong. An endoscopy, an exam where a doctor inserts a flexible tube with a camera (endoscope), found a tumor in Johnsen’s stomach, and suddenly he found himself preparing for surgery that would remove his stomach entirely.
However, a subsequent biopsy revealed that the tumor was not stomach cancer as first thought, but synovial sarcoma, a very rare cancer that is found even more rarely in the stomach. Johnsen proceeded to undergo four rounds of chemotherapy, during which he suffered a ruptured stomach. After a lengthy recovery, a subsequent surgery removed the remaining tumor, and Johnsen was told he was cancer-free.
Discovering TCR-T therapy
Life returned to be relatively normal for Johnsen, who described himself as a “beanpole” who had lost 45 pounds during his cancer treatment. But at his two-year checkup after his surgery, doctors found another tumor in his pelvis, and testing revealed it to once again be synovial sarcoma.
In a stroke of good fortune, Johnsen found himself in the ideal spot to receive a cutting-edge immunotherapy treatment. Johnsen’s oncologist at Princess Margaret Cancer Center in Toronto was Albiruni Abdul Razak, MRCP, one of the investigators on the ongoing SPEARHEAD clinical trial, which tested the TCR T-cell therapy afami-cel in patients with synovial sarcoma.
Dr. Razak is an assistant professor at the University of Toronto. Clinically, he is a staff medical oncologist in phase 1 clinical trials and sarcoma at Princess Margaret Cancer Centre and at Sinai Health in Toronto. He also leads the Medical Oncology Sarcoma Program at both institutions.
Johnsen tested positive for both the blood and protein markers required to participate in the trial. With enrollment in the trial closing just two weeks later, Johnsen took a leap of faith into something completely new.
“It felt a bit like taking a chance, but after going through treatment for a couple of years, I just had such an appreciation and awareness of the dedication and intention of the doctors and medical community surrounding me,” Johnsen said. “I just thought that if this trial’s gotten to this point, and it’s so targeted, it felt like a great opportunity to regain control of my life and ideally feel a sense of longevity that wasn’t going to exist for me anywhere else.”
Johnsen’s TCR-T experience
After receiving a medical procedure, leukapheresis, to remove his white blood cells to be re-engineered for the cell therapy, followed by a week of chemotherapy to wipe out his immune system, Johnsen was prepared to receive his treatment.
The afami-cel therapy process involves extracting a patient’s own T cells, genetically engineering them in a lab to express a T-cell receptor (TCR) that recognizes the MAGE-A4 protein on cancer cells, and then reinfusing these modified T cells back into the patient to attack cancer cells. The process of manufacturing the cells takes several weeks before they are returned to the patient’s bedside.
Johnsen was feeling reasonably confident and optimistic about his upcoming therapy, but it was only when he checked into Princess Margaret to receive his cell infusion that he realized just how big a deal this new type of therapy actually was.
“There was an audience, which was both cool and strange at the same time,” Johnsen said. “A number of scientists from the research team and other oncologists stopped by to watch the treatment happening. A number of the nurses were buzzing around, checking it out. You started to realize there was something different going on when people like that are just checking in to see it.”
Johnsen was one of the first patients to receive a cell therapy for a solid tumor at Princess Margaret. For him, the re-infusion process lasted only 45 minutes – 15 minutes per bag of T cells. For Johnsen, the process was easier than he could have imagined. After an “incredibly mundane” few days at the hospital, he was home by the weekend, and the next chapter of his life had begun.
A new lease on life
Johnsen’s life rapidly returned to normal after his TCR-T treatment. He went back to work, and back to the ski slopes. One month after his cell infusion, in December 2024, he received the results from his first scan, which kicked off one of the greatest weeks of his life.
“On Christmas Eve, they phoned me and told me that the results were back from my first scan,” Johnsen said. “There was a 15 percent reduction of the tumor. It looked like the therapy was showing effectiveness and was moving in the right direction – the greatest possible news for us at that point. I got married one week later on December 29, and things have just been ticking along since then.”
As Johnsen approaches the one-year anniversary of receiving his afami-cel treatment, that improvement has continued. Johnsen’s scans are now showing a 65 percent reduction in the tumor, a steady and stable trend that has allowed Johnsen to receive scans now every three months.
It’s an experience that has given Johnsen a new perspective. He has since met other cancer patients who haven’t had his good fortune in being able to receive an effective cell therapy, and it’s made him want to share his story to build more awareness about the potential of these powerful therapies.
“I’ve been through the future of cancer treatments, and I’ve also been through many rounds of the more traditional treatment route of surgery, chemo and radiation, so I can emphasize the ease and the critical differences between these therapies,” Johnsen said.ACGT continues to fund the research necessary to support cell and gene therapy breakthroughs like afami-cel. Our goal is to bring the power of cell and gene therapies to patients like Quinn Johnsen who need them today. Find out more here about how to support ACGT!
