During Pancreatic Cancer Clinical Trials Awareness Month in January, we are raising awareness about the importance of clinical trials and sharing stories from survivors. Here, pancreatic cancer survivor and PanCAN volunteer Reesa Levy talks about her experiences and urges others to consider clinical trials.
“I can’t believe it. Reesa, of all people…”
When Reesa Levy’s friends and family found out she had pancreatic cancer three years ago, this was a common response.
She was a vegetarian, worked out several times a week and never had health issues.
Perhaps those were some of the reasons her doctor had suspected something far less threatening when she came in with excruciating abdominal pain.
A CT scan revealed appendicitis, so her doctor scheduled an appendectomy.
But when the pain didn’t go away after surgery, it was clear that something more was wrong.
“I was also tired and losing a lot of weight – 18 pounds – quickly,” Reesa said.
A subsequent scan revealed a mass on her pancreas, and though Reesa and her doctor were hopeful it was benign, a follow-up biopsy showed otherwise.
Her doctor delivered the news. “There are cancer cells on your pancreas,” he said matter-of-factly as she sat, stunned.
In control of her healthcare
Reesa is a take-charge person.
A retired New York City school principal, she was accustomed to managing the challenges that come with overseeing 2,500 high school students. But pancreatic cancer is a challenge no one can prepare for. Reesa was overwhelmed. Numb. Devastated.
Together, with her daughter and son now with her in Florida, they came up with a game plan: “You have to be in charge of your own healthcare.”
Just five days after the January 2018 diagnosis, Reesa flew to St. Louis, where her daughter Ashley lives, for an appointment with a surgeon at Siteman Cancer Center at Barnes-Jewish Hospital, the teaching hospital for the Washington University School of Medicine.
Ashley had stepped in to handle the details of her mother’s treatment and care while Reesa tried to focus on the big picture – staying positive for a good outcome. She steered clear of the internet while Ashley dove in, learning about the latest pancreatic cancer research, clinical trials, specialists and more.
It was Ashley who had found the surgeon, William Hawkins M.D., a pancreatic cancer specialist who would perform her distal pancreatectomy. She chose Dr. Hawkins because he had performed hundreds of these types of surgeries.
“I’m very grateful for my family’s help during this stressful time – making calls, asking questions, interviewing doctors, and getting appointments and second opinions,” Reesa said.
One week after her diagnosis, Reesa had laparoscopic surgery to remove the tail of her pancreas, part of her stomach and colon, and her spleen.
A clinical trial option
The Pancreatic Cancer Action Network (PanCAN) strongly recommends clinical trials at diagnosis and during every treatment decision. PanCAN Patient Services can give you information about clinical trials and search for trials that meet your needs.
Each person in the study had a different vaccine made from a sample of their own tumor tissue, to encourage the body to fight cancer with their own immune system.
Once a month for six months, the immunotherapy vaccine was administered, along with a small electrical current, into her arm. Reesa did well on the trial and still shows no signs of cancer today.
“My goddaughter, who is a doctor, suggested early on that I join any study I was offered,” Reesa said. “I’m a huge proponent of clinical trials and think all patients should consider one, both for themselves and for future patients. You’ll also get regular CT scans, bloodwork and constant monitoring by your healthcare team.
“I also encourage going to a teaching hospital, if you can. They’re usually on the cutting edge of research and treatment. The team that treated me was full of experts in pancreatic cancer.”
Contact PanCAN for help finding a specialist in your area.
“It really humbled me, all the people surrounding me to make me better.”
Giving others the chance she had
Today Reesa is enjoying a volunteer role as Advocacy Chair for the Broward-Palm Beach (Fla.) Affiliate of PanCAN. She’s seen first-hand that the volunteering she does – encouraging her members of Congress to increase federal research funding for pancreatic cancer – is making a difference for her and other patients.
One specific way it’s hit home: the immunotherapy clinical trial Reesa participated in was funded by the National Cancer Institute.
She also participates in her local PanCAN PurpleStride and has raised more than $8,000 for PanCAN, money that will go toward funding patient programs and services like our Patient Services, our Clinical Trial Finder and our Precision PromiseSM clinical trial platform, as well as scientific research grants and government advocacy work.
The reason for her continued involvement with PanCAN is simple.
“I have to do something to help other people have the same chance that I’ve had,” she said.