In the last year of his life, Frank Parrillo underwent four craniotomies and several grueling rounds of radiation to treat melanoma that had spread to his brain.
It wasn’t until his wife, Catherine, found a clinical trial at UF Health that the family discovered what had been in short supply as they navigated the deadliest skin cancer: hope.
Bently Doonan, MD, a UF Health oncologist whose research focuses on novel immunotherapy treatments for advanced-stage melanoma, worked rapidly to enroll Frank in a clinical trial that provided personalized support.
"Dr. Doonan gave me hope that the clinical trial would give Frank a better chance of enjoying whatever time he had left,” Catherine said. “I wish it didn’t take 11 months to find him.”
Frank, who moved to DeBary, Florida, from New Jersey in 2022, was diagnosed with melanoma on his face in 2018 at age 49. The spot was removed, and he continued to get routine skin checks. Two years later, a cancerous spot was found on his arm. However, the cancer had not spread to his lymph nodes, meaning the disease had not moved beyond his arm.
Then, in fall 2022, Frank began getting severe headaches and dizziness. Catherine’s worry grew, peaking one Saturday in December as they headed to dog training for their corgi, Moose.
“He asked me to drive, and that never happens,” Catherine said.
As soon as they got home, Frank threw up. She drove him straight to the hospital.
The next day, a CAT scan revealed four brain lesions. Frank underwent brain surgery the next day, the first of four over the next eight months. By May, after targeted radiation and one round of immunotherapy treatment, Frank was experiencing liver complications and jaundice. By the summer, the cancer was in his bones and liver. Doctors told the family that treatment options were limited.
Always a meticulous researcher, Catherine set out to find her own answers. She scoured the internet using every keyword she could think of: NRAS mutation. Stage 4. Metastatic melanoma. To the brain. Florida.
“Throughout this whole experience, I kept telling myself that knowledge is power,” Catherine said. “We weren’t ready for hospice.”
For patients like Frank, Dr. Doonan says clinical trials should be considered the standard of care, highlighting the importance of enrolling as soon as possible.
“The most important message I have for anybody in the brain metastasis space is to take part in a clinical trial because that is our only hope to get more information to advance better treatments for our patients,” he said.
Dr. Doonan leads several clinical trials at UF Health. One is testing how University of Florida-developed mRNA technology may enhance patients’ responses to immunotherapy through personalized vaccines. This year, Dr. Doonan took the helm of a new Translational Research Council at the UF Health Cancer Center. The council aims to speed the flow of homegrown discoveries from UF labs into well-designed, high-quality clinical trials.
When Catherine’s search turned up Dr. Doonan’s clinical trial for patients with Frank’s genetic mutation, she understood the statistics: Of the patients with melanoma that has spread to the brain, which occurs in almost half of patients with the disease, few survive more than a year. It was the personal connection with Dr. Doonan that encouraged her to move forward.
“Right away, I felt like he saw Frank. He saw who he was,” Catherine said. “Frank still had this zest for living.”
The clinical trial team was a life raft. Research coordinators jumped through every hoop to enroll Frank as quickly as possible, even making a same-day appointment for a required eye exam.
“I never felt like there was anything I couldn’t ask,” Catherine said. “From the valet guy at the entrance to the dining people to the nurses to the blood draws — it was a beautiful, kind, and well-oiled machine. I never felt lost.”
By December, Frank’s health was declining, though his love for life’s simplicity, for more time with his wife and daughter, for watching his beloved New York Giants, and for finding humor despite the anguish was very much intact. So was their crew of supporters — affectionately called the “Parrillo Posse” — who rallied from New Jersey and ensured the family never felt alone.
In late December, when Frank fell while getting out of his wheelchair during an appointment with Dr. Doonan, Catherine remembers a knowing look passing between her and the doctor: They were nearing the end.
“Frank asked me what we were doing for New Year’s, and I said, ‘I don’t know about you, but we’re staying home and watching football,’” Catherine said. “Our friends came, we stayed up until midnight, he had his (party) hat, we toasted at midnight. Three days later, he had Chipotle, and his whole left side went numb. I rushed him to the local hospital.”
Doctors found a severe brain bleed, and Frank went home to hospice care on Jan. 5. Even then, Dr. Doonan’s support was unwavering. He spent more than an hour on the phone with Catherine, easing her anxiety about giving him morphine.
“Dr. Doonan gave me an avenue and a mode to take care of Frank at the end, in his house, surrounded by tons of people, without fear, even though he was no longer his doctor,” Catherine said.
Five days later, Frank passed away at age 55.
As she navigates the fog of grief, Catherine works to tell others about the importance of early cancer detection and monitoring. She wants to refute the idea that clinical trials are a last-ditch effort or something to fear. Now, she’s raising money for Dr. Doonan’s research to keep Frank’s buoyant spirit alive by paying forward the hope she found.
“I don’t want clinical trials to be a last resort,” she said.
This article was originally written and printed as Clinical Trial Helps Frank Find Hope Through Late-Stage Melanoma by November 27, 2024
By Leah Buletti Assistant Director of Communications for the UF Health Cancer Center at UFLhealth.org (https://ufhealth.org/stories/2024/clinical-trial-helps-frank-find-hope-through-late-stage-melanoma)
This story is a powerful testament to the resilience of patients and families facing advanced-stage melanoma. Catherine’s determination to seek out clinical trials and Dr. Doonan’s commitment to personalized care highlight the importance of innovative research and timely access to treatment. Snow Rider 3D