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.
“I was terrified,” Zaleski-Conine says. “Very few humans had been through the treatment and I had no one to talk to. But I had no other options, so I went for it. Either that, or give up on life.”
The next days were difficult. The care team filtered Zaleski-Conine’s T-cells from her immune system and shipped them to a special laboratory in California, operated by Kite Pharma. Scientists genetically engineered the cells to recognize a protein that’s associated with B-cell lymphoma. This process takes about two weeks. Meanwhile, back in Rochester, Zaleski-Conine became so gravely ill that her doctors worried she would not make it.
But she hung on and received the infusion on May 29, 2018 — a day shy of her 45th birthday.
As her immune system responded, she predictably suffered from many expected side effects. But she challenged herself to recover by walking every day and digging into her competitive spirit as she worked through rehabilitation.
In one month, the cancer had disappeared, and today, she remains stable. She is grateful for “research and amazing medicine.”
“It’s very simple — there is no way to possibly pay back and thank everyone at Wilmot,” Zaleski-Conine says. “If I hit the lotto, I would send every doctor and nurse who helped me on a great vacation... I was someone who was having intense treatment and nothing was working, and then I get this new therapy and all of a sudden my tumors are gone.”
“And now,” she says, “I’m watching my kids grow up.”