Patrick Brophy, M.D., physician-in-chief at UR Medicine Golisano Children’s Hospital, says he never looked at his own medical chart. But he knew his health was declining rapidly.
Brophy suffered from a relapse of mantle cell lymphoma, and standard therapy was not working. His luck changed as he became eligible for a groundbreaking clinical study evaluating CAR T-cell therapy in this type of blood cancer. It was the first clinical trial of its kind in the nation, and the Wilmot Cancer Institute had a significant role in the study, with Patrick Reagan, M.D., at the helm. Cancer is never welcome, but his encounter with Wilmot was serendipitous, Brophy says.
Brophy’s initial diagnosis occurred in 2016 in Iowa, while he was a pediatric leader at University of Iowa. After aggressive treatment there, he had a period of remission and during that time was recruited to the University of Rochester as the William H. Eilinger Professor and Chair of the Department of Pediatrics. Within a year of moving to upstate New York, though, his cancer returned — but being in Rochester allowed him to receive care from a world-renowned lymphoma specialist, Jonathan Friedberg, M.D., M.M.Sc., Wilmot’s director.
“Cosmic debris got me to Rochester,” Brophy says. “Had I not been here, I wouldn’t have had the opportunity for this treatment. Now I’m able to take a step back and understand that the science is remarkable and the leadership team here is amazing.”
During his CAR T-cell therapy, Brophy’s immune system went into extreme overdrive and he became so ill that it was “touch and go” for many days, he says.
The CAR T cells were infused on Oct. 1, 2018, and the next day his temperature soared to 105 degrees. By day four he was really struggling with confusion — “and suddenly, in the hospital room while talking to my wife, I just blanked.” He slipped into a coma due to the treatment’s toxic impact on the brain and he doesn’t remember a thing until he woke up two weeks later in the intensive care unit at UR Medicine’s Strong Memorial Hospital.
“I was awake but I couldn’t move my arms or legs,” he recalls. “My kidneys had shut down, too, and I was put on dialysis. When I was being intubated in the ICU, apparently, I bit down so hard on the bite block that I lost my front teeth. And because I couldn’t move for so long, I lost muscle mass and 70 pounds. It was quite hard on my wife and my family.”
In fact, Brophy was in the hospital for 56 days. He improved dramatically through hard work and rehabilitation, and was able to come home for Christmas of 2018.
He has remained stable ever since, and keeps himself busy at work and active outside with golfing, hiking, skiing and skating — and hanging out with his two young-adult sons.
“You have to have belief in something, that there is a future,” Brophy says. “You can’t change what’s going on but you can get lost real quick without hope.”
“In my job I see a lot of bad things — like when families lose kids — and I watch how it never goes away and how they power through life,” he adds. “This has made me think: What do I value? It’s an old adage but it’s really about family and friends. Being there and being present. That’s something I’m focused on a lot more.”