Wilmot Cancer Institute / Specialty Services / Blood & Marrow Transplantation / Patient Stories

Patient Stories

Kaleigh and Ron Wood

An Inspiring Father-Daughter Relationship

Nicole's Story

CAR T-cell Therapy: 'Research and Amazing Medicine'

Nicole Zaleski-Conine, in the poncho, with her husband and children. (Photo taken prior to COVID-19 pandemic)

In the autumn of 2017, Nicole Zaleski-Conine was a 44-year-old mother of five living in Irondequoit, working as a hairdresser, helping her husband run a business, and spending a lot of time on sports fields, shuttling some of her children to practices and games.

She felt something odd in her stomach and chalked it up to lingering effects from three hernia surgeries in two years. Night sweats came next, but she believed they were from peri-menopausal hot flashes and spending time in a busy, hot, hair salon.

By the end of December, her symptoms worsened dramatically by the day. The definitive cancer diagnosis came in January 2018: follicular lymphoma that transformed into diffuse large B-cell lymphoma.

“Initially I thought: Phew! Lymphoma,” Zaleski-Conine recalls. “This is totally beatable.”

But things did not go as she had hoped. After the first chemotherapy treatment, she suffered from tumor lysis syndrome, an emergency that occurs when a large number of cancer cells die quickly and flood the bloodstream with toxins. She survived a stint in the ICU at UR Medicine’s Strong Memorial Hospital and went on to receive more chemo. After each treatment, however, the disease would return within days.

“I started realizing how serious this was,” she says. “But I never let myself think beyond the idea that there will always be something new to try.”

Sure enough, as her standard treatments were failing, the U.S. Food and Drug Administration approved CAR T-cell treatment for diffuse large B-cell lymphoma. Her oncologist, Carla Casulo, M.D., a blood cancer specialist at Wilmot, was on board and worked collaboratively with Patrick Reagan, M.D., Wilmot’s CAR T-cell specialist.

Maxine's Story

Maxine Wilson (Photo taken before COVID-19)

CAR T-cell Therapy: Finally, a Milestone to Celebrate

Maxine and Dave Wilson finish each other’s sentences. They feel blessed to have each other, given what Maxine has been through.

She was unexpectedly diagnosed with non-Hodgkin lymphoma in 2009 at age 57. It was discovered during routine blood work for a primary care visit, and she had been feeling well. “The word ‘cancer,’ it just blew me away,” says the Syracuse woman. “But I just decided to live with it, pray about it, and after that first treatment, they said I was fine.”

But Maxine Wilson’s bout with cancer was far from over. She endured four recurrences during the next several years. Each time, the disease came back within one year of completing treatment. Much of that time the couple was living in Georgia. At one point, she went for a work-up at Emory University’s cancer center, and doctors there discovered she also had cold agglutinin disease, a rare type of anemia. When a person with this condition is exposed to cold temperatures, it can cause the immune system to mistakenly attack healthy red blood cells. Those were difficult times.

“I had many up-and-down days,” Maxine Wilson says. “But I got my strength from praying to the Lord, and I went on with my life.”

Dave Wilson interjects: “It wasn’t that simple. Chemo was so devastating to her… it was not a cake walk, it was very tough stuff.”

She agrees and recalls that she became depressed. “I would think, ‘Why is this happening to me?’”

In 2015, they decided to return to their native upstate New York, despite the cold weather. Maxine Wilson missed her mother, who lives in Auburn, and the Wilsons looked forward to being closer to children and grandchildren in New York City.

Aggressive cancer treatments continued under the care of her Syracuse oncologist, Tarek Sousou, M.D. In 2016, he recommended a stem-cell transplant at the Wilmot Cancer Institute. She hoped that would be the end of cancer, but again the disease returned.

Patrick's Story

CAR T-cell Therapy: The Doctor is a Patient

Patrick Brophy, M.D. (Photo taken prior to COVID-19)

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.