“No lasagnas,” he told all who would get in touch. “Go research and find a survivor phone number because we want to talk to them tomorrow.”
He had dozens of conversations with people across the country -- some he connected with just once or twice, while others he is still in contact with today. Talking to survivors was his “medicine” at a critical moment – providing hope and solace at a time when so much of life was upended.
While Troy put together a network of survivors, his wife, Jennifer, sprang into action. She worked to locate specialists and others whom she calls their “A-Team” to help Troy tackle pancreatic cancer. This group included medical professionals – oncologists, radiologists, gastroenterology specialists – but also friends, family and PanCAN.
“Embracing the help that came to us was a big learning lesson,” she said. “We saw that when we accepted help and had other people do things for us, whether it was picking up medications or walking the dog, we were giving them a gift to be involved, to be part of the journey towards a miracle. So, we quickly saw the beauty in it.”
“A Case Manager at PanCAN sifted through 600 trials and narrowed it down to 10 or 12 for us,” he said. “I mean, it was really amazing.”
The goal was to give Troy the opportunity to tackle the disease by focusing on the present while planning for every contingency they could imagine. Their doctor talked to them about the five-year survival rate, which although improving still hovers at 11%.
“We knew that we were not going to sit back and say, ‘Oh, okay, this is our path.’ We immediately started talking about, ‘We’re going to be a trailblazer. We’re going to be the miracle,’” said Jennifer.
Troy wasn’t a candidate for surgery due to the location of the pancreatic tumor and because it had spread to his liver, so he enrolled in a clinical trial that combined a standard chemotherapy with two immunotherapies. After several months in the trial, scans showed a new tumor in his liver, prompting Troy, Jennifer and their healthcare team to move to Plan B.
In August of 2021, Troy went off the trial and started a chemotherapy regimen of FOLFIRINOX, which required a total of 14 treatments every other week for two months. By October, scans showed that the tumors had shrunk significantly and no new ones had emerged.
“It was October 10th,” Troy said. “It was a Saturday morning when I got my results. It was one of the best days of my life. I just kind of floated around all day -- really happy and grateful. Then we went into treatment mode.”
As a next step, Troy and his healthcare team used the results of earlier biomarker testing to inform his next treatment option: A maintenance pill to inhibit tumor growth that targets a specific genetic mutation his cancer had.
Meanwhile, Troy and Jennifer continued to explore their network and got in touch with Michael Chuong, MD, medical director of radiation oncology at the Miami Cancer Institute, as they had heard about a type of radiation offered there that could be helpful.
Called MRIdian SMART, the technology uses magnetic resonance imaging (MRI) to track the tumor throughout treatment and control the radiation beam in real time. This allows for high doses of radiation to be delivered with great accuracy, preserving healthy tissue and decreasing side effects.
In October of 2021, Dr. Chuong and co-authors presented a study at the Annual Meeting of the American Society for Radiation Oncology showing improved survival and quality of life in patients with pancreatic cancer. In a press release announcing the study, PanCAN President and CEO Julie Fleshman, JD, MBA, said: “These findings offer hope for those facing an inoperable pancreatic cancer diagnosis and are bringing us one step closer to achieving our vision to create a world in which all patients with pancreatic cancer will thrive.”
For Troy and Jennifer, MRIdian offered what they asked for: A chance for Troy to become a long-term survivor. Since surgery and standard radiation were not options for him because of his stage IV diagnosis, the treatment he received at the Miami Cancer Institute opened additional doors.
Now, the Florences live by what Troy calls his “five-card poker hand.”
“In the beginning, we thought, ‘Okay, I’m a poker player. This is the hand we’re dealt. How are we going to play it?’ So, we came up with five things. They’re focused on medicine, community, holistic health and mental health. And then the final one is love.”
For the medical card, they recommend seeking out a pancreatic cancer specialist to provide care and treatment options.
“Reach out, network, find as many resources as possible,” Troy said. “The PanCAN ‘A-Team’ is a big part of that.”
Accept help from friends and family; they want to support you. Say yes when they do offer their time and energy. That’s the community card.
When it comes to holistic health, Jennifer and Troy sought out a naturopath and resources about nutrition and exercise. He worked with a personal trainer to stay strong during chemotherapy. This goes hand in hand with the next card: Mental health.
“The mental game is probably the toughest,” he said. “Any number of things can help, whether it’s prayer or chanting or breathing, meditation, psychiatrists. For me in the beginning it was talking to survivors.”
And then there’s the fifth card, love.
“I actually get choked up just thinking about it and the love that was given,” he said. “The time, the energy, the support. I can’t put into words what it’s meant to me.”
The experience has changed him in ways he can’t quantify.
“I love differently now. I truly do,” Troy said. “I’ve always said those words, but I say them a lot more now and it means something different to me now. It’s just more intense. I don’t know. I don’t know how to explain it other than that.”
Now, buoyed by what he received, he’s speaking to people newly diagnosed with pancreatic cancer, offering the same support and hope he sought earlier in his journey.
“The people that I’ve reached out to, the cancer survivors that spend time with me, that’s why I want to give back in that way now,” he said.
For Jennifer, the journey has been a lesson in accepting the unknown.
“If you gave me the choice, I would take my old life back,” she said. “But we can certainly acknowledge that by adapting to our new situation, we have a whole new level of awareness, gratitude and magnitude of love.”
Any treatments, including clinical trials, mentioned in this story may not be appropriate or available for all patients. Doctors take many things into account when prescribing treatments including the stage and type of cancer and the overall health of the patient. Contact PanCAN Patient Services for personalized treatment options.