Even when doctors told Stephanie Lipscomb she had brain cancer for a second time, she never thought she would die.
Lipscomb, now 23, is a senior nursing student at University of South Carolina Upstate’s Mary Black School of Nursing. Tall and slim with pretty, girl-next-door looks, Lipscomb has spent the end of the semester preparing for a move to Raleigh, N.C., and her internship at Duke University as a nursing assistant.
While she may be the picture of health now, three years ago, Lipscomb began suffering severe headaches as she took a summer class and worked as a waitress at Outback Steakhouse in Spartanburg. The headaches, which seemed to come from behind her eyes, continued to worsen, but Lipscomb, who describes herself as stubborn, attributed them to the stress of college and working.
Eventually, the headaches got so bad it hurt to move. She couldn’t bathe or dress herself. She couldn’t eat due to nausea, and threw up bile. She lost 15 pounds.
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Lipscomb, like many young adults, didn’t have a regular doctor. She went to health clinics and was first diagnosed with a stomach bug, then with chronic migraines, then again with a sinus infection and headache. Her boss at the restaurant urged her to go to a doctor. Lipscomb remembers being so out of it that she asked her grandmother to take her to the doctor on a Sunday. She went to the emergency room at a hospital in her hometown of Seneca, where she waited in pain, lying across chairs in the waiting room for six hours because she couldn’t hold her head up. Hospital staff, believing that she may be suffering from meningitis, asked her to wear a mask.
But rather than meningitis, a CT scan revealed a mass in Lipscomb’s brain, and she was severely dehydrated. She was rushed to Greenville Memorial Hospital, where she was told she had stage 4 glioblastoma, an aggressive brain cancer. She underwent a craniotomy, and surgeons were able to remove 98 percent of the tennis-ball sized tumor.
“This cancer is not common in a 20-year-old,” Lipscomb said. “The odds were not good for me.”
She was urged by family to go for treatment at Duke University Medical Center, known for its research hospital. Lipscomb underwent 10 weeks of radiation treatment, plus oral and intravenous chemotherapy as prescribed by her doctors at Duke, though she was fortunate to be able to have the treatments closer to home, in Greenville and Seneca.
The hardest part of her initial battle with cancer?
“I lost all my hair,” she said. “I wore wigs.”
Her mother, Kelli Lusk, cut her hair in honor of her daughter, and encouraged Lipscomb to donate her hair to Locks of Love.
Although pitifully thin, Lipscomb continued going to the gym to keep her energy up. She was determined that cancer wasn’t going to win.
“I never thought I was going to die, ever,” Lipscomb said. “I never really let the cancer define who I was.”
Lipscomb missed the fall semester of 2011 but returned during the spring. In April 2012, a week before final exams, she heard bad news from her doctors during a check up at Duke — the cancer was back.
One option was to start a new chemotherapy. She couldn’t have more radiation, having maxed out during her first round of treatments.
Dr. Annick Desjardins then suggested another option. Her colleague at Duke’s Preston Robert Tisch Brain Tumor Center, Dr. Matthias Gromeier, had spent decades conducting research on the poliovirus and how it might be used to fight cancer.
The treatment would involve injecting genetically engineered polio directly into Lipscomb’s brain tumor, and she would be the first human to undergo the treatment in a clinical trial, approved by the U.S. Food and Drug Administration just two weeks prior. And not only would a virus be injected into her brain, it would be done while she was awake. Lipscomb was considered a candidate for the trial due to the size and location of her tumor, and because there was only one.
Lipscomb said her mother thought, “You want to put polio in my daughter’s brain?” And although Lipscomb had authorized her mother to be power-of-attorney “just in case,” Lusk allowed her daughter to make her own decisions about treatment.
“I said, ‘Let’s do it,’” Lipscomb said. “My outlook was, I trust my doctors. They have my life in their hands. I had people praying for me all over the world through prayer chains.”
Lusk said Stephanie usually carefully weighs a big decision. It was a surprise to Lusk when her daughter quickly agreed to the trial.
“I think that was her faith,” Lusk said. “It was one thing to be told the cancer was back, but then to offer to put polio in her head? It was overwhelming. I was very scared about that. Terrified. But her faith in the Lord is what kept her going.”
Lipscomb returned to USC Upstate to take her exams and made the Dean’s List for the semester. She was then hospitalized at Duke for the procedure. Doctors drilled a hole in her skull to insert a catheter through which the poliovirus was infused into her tumor over 6.5 hours.
It was a milestone for Gromeier, who has dedicated his career to cancer research.
“It was a very, very emotional moment when Dr. Gromeier got to push the start button to start the infusion,” Lipscomb said.
Although she was heavily sedated, Lipscomb watched two movies — “The Help” and “We Bought a Zoo” — and read the final installment of “The Hunger Games” trilogy during the procedure.
The genetically engineered poliovirus being used in the trial is called PVS-RIPO. Gromeier explains in a segment on the brain tumor center’s website that genetic engineering has been used to remove the virus’ disease-causing ability by splicing it with a piece of genetic code from a common cold-causing rhinovirus.
Once PVS-RIPO is inside a tumor, it infects and kills the tumor cells. According to researchers, PVS-RIPO also triggers the body’s immune system, as the immune system recognizes viral infections. The immune system then attacks the infected tumor.
Lipscomb was the first patient to undergo the treatment, in May 2012, and four other patients have been involved in the first phase of the study, according to Duke. One patient died 6 months after the treatment, due to tumor regrowth, but the other four are alive.
Doctors noted that PVS-RIPO rapidly reduced Lipscomb’s symptoms, and that she is now in excellent health and is in remission. Lipscomb continues under doctors’ care, has had numerous MRIs to check her status and visits her doctor every three months for the time being. She said she only learned later that at her second cancer diagnosis, doctors believed she only had six months to live if she had undergone chemotherapy instead.
“Doctors told me after the fact,” Lipscomb said, because they didn’t want the grim prognosis to affect her positive attitude. “Your outlook on cancer — you can let it overcome your life, and if you do, you succumb to it. I always relied on my faith, and I do believe God created the poliovirus for me to be cured, I always knew there was more to my story, and I knew I was going to be OK.”
Lusk said her daughter’s cheerful attitude helped carry the family through a difficult three years.
“She kept all of us cheered up,” Lusk said. “She’s amazing. She’s our miracle child.”
Using viruses to battle cancer is an idea that’s been around for at least 100 years, according to Duke. But advances in genetically engineering the viruses have come about recently. Doctors at Duke are planning additional phases of testing PVS-RIPO’s ability to fight glioblastoma, as well as brain cancers in children. Research shows that PVS-RIPO targets and destroys cancer cells from the most common cancer types and could be directed against pancreatic, prostate, lung, colon and many other cancers. Clinical trials in those areas are planned at Duke.
Today, Lipscomb’s hair, which has grown long again, covers the scar that runs along her hairline on her forehead, from right to left — a reminder of her craniotomy. She turns to a page in the May 5 issue of People, where among the glossy photos of the 50 most beautiful people of the world, including actresses Lupita Nyong’o, Julia Roberts and Jennifer Lawrence, there in full color is her own story of amazing science and perseverance.
Seeing her daughter in People was a “wow” moment for Lusk. The family has kidded her about being followed by the paparazzi. She’s proud of her daughter for speaking out to help others and for becoming a nurse.
“I just think everything happens for a reason — everything has a purpose,” Lusk said. “She’s here for a reason — to help others and tell them that there is hope. This is her calling.”
Lipscomb said helping others is all she’s wanted to do since deciding to become a pediatric nurse, even before her fight with cancer. Her ordeal has made her career path more clear; she wants to work with pediatric cancer patients.
“I want people who have been diagnosed with cancer to know there is hope, and I believe one day there will be a cure for cancer,” Lipscomb said. “I will be able to tell my patients what I went through.”
For those undergoing cancer treatment now, Lipscomb urges them not to stop living their lives.
“Continue your normal activities and do what makes you happy,” she said.
For Lipscomb, happy things include reading, eating (strawberries are her favorite), her boyfriend Matthew Hopper, a 2013 graduate of USC Upstate, friends, her Zeta Tau Alpha sorority sisters and family.
“Definitely my mom,” she said. “She can drive me crazy, but I talk to her every day.”
Just being able to have a drink with friends, something Lipscomb couldn’t do when she was having chemo treatments, seems special.
“The little things are very important now,” she said.
When asked how she’s feeling, she smiles.
“Thankful. Amazed. Blessed beyond measure.”