Quinn Johnsen: Regaining Normal Life, Thanks to a Novel Personalized Immunotherapy

At 31, Quinn Johnsen was a thriving industrial designer in Toronto. He and his partner, now wife, Kate had been together for nearly a decade, sharing a love of city life and new restaurants, with plans for a long future together. But in early 2021, Quinn began feeling unusually exhausted. He went to Toronto Western Hospital, expecting a minor explanation.

Instead, doctors found that Quinn had severe blood loss and that his hemoglobin levels were dangerously low. Further scans revealed a bleeding tumor on the upper side of his stomach. A gastroscopy followed by a biopsy led to the diagnosis of synovial sarcoma, a rare and aggressive cancer typically seen in young adults. Within weeks, Quinn was facing a drastically different future—one defined by blood transfusions, radiation to stop the bleeding, and an urgent treatment plan. “Somebody throws cancer into your life. It is devastating.” This was also happening during the tail end of COVID. “While I was at the hospital, it was challenging to see family, making it even more isolating,” Quinn said.

As part of his initial treatment plan of radiation, chemotherapy, followed by surgery, Quinn was prescribed a grueling regimen of 6 cycles of chemotherapy starting in March 2021. Each cycle involved four days of in-patient chemo followed by 2 weeks of recovery. He was unable to work and found himself tethered to a rotating schedule of infusions, bloodwork, and side effect management. “It took over everything,” Quinn recalled. “I was 31, Kate was 31—we were supposed to be building our lives.”

The fourth cycle punctured his stomach lining, leading to two and a half months in the hospital, fed only intravenously, and isolated due to immune suppression. “I could not eat or drink for 2 months. Just waiting, deteriorating, hoping the next thing would work,” Quinn said. Despite the immense physical and emotional toll, chemotherapy was very effective. It shrank the tumor significantly and allowed surgeons to proceed with a complex resection, removing part of his stomach.

Quinn had no evidence of cancer for over 2 years after the surgery. However, in June 2024, during a routine scan, a new tumor was discovered in his lower pelvic region—evidence of metastasis. Although it was small, it meant the cancer had returned. Quinn was no longer considered curable by conventional means. He was prescribed an oral chemotherapeutic to mitigate the growth and metastasis.

This is also when Quinn’s physician discussed a clinical trial for a novel treatment called afamitresgene autoleucel (afami- cel). Afami-cel is a form of immunotherapy, called TCR T-cell therapy, that re-engineers a patient’s own immune cells to recognize and attack cancer cells expressing specific proteins. In Quinn’s case, the key was the presence of two rare protein biomarkers, HLA-A02 and MAGE-A4, that made him eligible for the trial. The timing was tight, the trial was closing soon, and samples had to be rushed for genomic validation. But the results came back in time and he made it into the trial.

In September 2024, Quinn underwent a week of chemotherapy to prepare his immune system. Then, over the course of 5 days in the hospital, he received his personalized cell therapy. Unlike chemotherapy, he tolerated the afami-cel well. He did not experience any major side effects. “It was a slow 4 days in the hospital, which is great. Boring in the hospital is wonderful,” Quinn said. Over the next few months, each one of the CT scans taken showed a reduction in tumor size. The most recent scans showed the tumor has shrunk by 63 percent.

Quinn’s physician now describes his cancer as “stable.” “The conversations have changed,” Quinn said. “We’re talking about how I can get on with my life, not how to brace for what’s next. I am able to work, and my friends would agree that my life has kind of returned to as normal as possible from afami-cel treatment.”

According to Dr. Albiruni Abdul Razak, Quinn’s treating physician, afami-cel is a novel, first-in-class treatment that marks a turning point in sarcoma care. “This is the first time we’ve had engineered T-cells for solid tumors,” he explained. “When we see responses, they can be deep, meaningful, and prolonged.” Quinn is living proof. He has returned to full-time work. He and Kate are thinking about the future again.

The broader implications are even more profound. As Dr. Abdul Razak emphasized, rare cancers like synovial sarcoma often lag in research investment and treatment development. Yet, cell therapies like afami-cel demonstrate what’s possible when innovation is funded and focused. “While these drugs will be available mostly at specialized centers for now, this is one foot in the door—a real paradigm shift.”

Quinn agrees. He believes his experience underscores the need for continued investments in medical research. He emphasized deep gratitude to researchers for developing personalized treatments like afami-cel. He urged the scientific community to keep digging deeper and stressed the importance of continuing to invest in research that addresses both common and uncommon cancers.

Afami-cel was a silver bullet— built from decades of research. We need to fund more of them.