Flip through Alicia Bertine’s iPhone, and you can tell her life is brimming with adventure: In a video from New Year’s Eve, she’s dancing to Latin music, laughing in a black sequined minidress. A photo shows her completely bald, wearing a black two-piece. “I’ve got scars, but I don’t care. I still wear a bikini,” she says. Another pic has her skydiving, a hobby she took up in 2012. “I jumped through a rainbow once,” she says. “The raindrops looked like diamonds in the sky.” Since her second bout with cancer in 2010, two years after her first, Alicia, 31, has vowed to make the most of every minute, never to let a day go by without doing something extraordinary.
That includes the way she approaches her treatment. Despite having been given a poor prognosis, Alicia has survived and thrived by seeking out clinical trials, research studies that typically vet new drug therapies for safety and effectiveness. Over the past eight years, she’s participated in three and hopes to join more. “The only chance I’ve ever had against this cancer is being one step ahead,” says Alicia. So far, her strategy is working.
Her Battle Begins
In 2008, Alicia was a seemingly healthy 23-year-old who was running her own teeth-whitening business in Las Vegas. Then one day in March, she started feeling woozy. “I thought maybe I wasn’t eating right or was dehydrated,” she says. But out of nowhere she had several seizures and went to the hospital. A battery of tests, including abdominal scans, yielded the cause: A six-centimeter tumor in a bile duct near Alicia’s pancreas was pressing on her spine, her stomach and a major artery, causing internal bleeding. She had a rare kind of pancreatic cancer.
The disease is uncommon, especially in young women. Roughly 25,000 women will be diagnosed with it this year, at a median age of 72; by contrast, almost 10 times that many will be told they have breast cancer. But there are no reliable screening tests for pancreatic cancer, and treatments are relatively few. The illness has become America’s third leading cancer killer, behind lung and colon cancers.
Alicia underwent a risky hours-long surgery called a Whipple Procedure, in which the gall bladder and duodenum and parts of the pancreas and stomach are removed. She then started on a standard chemotherapy regimen, her thick, wavy dark hair falling out in clumps in the shower. “I cried. It was like, OK, here we go,” she says.
But the treatment worked, and it appeared to keep her cancer-free for nine months. Moving home to Florida to be near her family and friends, Alicia began rebuilding her life. Then, in September 2010, severe back pain turned out to be a sign that the tumors had returned — to her pancreas and elsewhere in her body.
Finding Her Strength
Treating pancreatic cancer successfully is rare. Doing it twice is highly unlikely. “They gave me three to six months to live,” says Alicia. “It was devastating.”
But shortly after she heard the news, something inside Alicia shifted. “I was like, You know what? This isn’t helping, so get it together and keep fighting.” She underwent another round of chemo, this time a combination of drugs that included a medicine that has been used to treat breast and lung tumors. The side effects were awful: Nerve damage ravaged her legs. “Sometimes I couldn’t get down the stairs.” It worked — until it didn’t. Later, depression set in. “I couldn’t take it anymore,” she says. “I wanted to jump off a balcony.”
Still, Alicia rallied. She dove into learning everything she could about her illness with the help of the Pancreatic Cancer Action Network, an advocacy organization. Staffers there informed her of clinical trials she could look into, and in 2011 she enrolled in her first — one that paired a standard chemo regimen for pancreatic cancer with a hormone-like drug believed at the time to suppress certain kinds of pancreatic tumors. This cocktail worked on the cancer in Alicia’s liver for about two months, but not on her disease in other areas. There, tumors continued to grow.
The second trial Alicia entered, in August 2012, was at the Mayo Clinic in Jacksonville. The drug Alicia tried, a tyrosine kinase inhibitor, interferes with the blood supply tumors need to grow and has proved successful against other cancers, like certain types of kidney cancer and sarcomas.
For the first time in years, Alicia felt healthy and energetic. The drug stabilized, and in some cases shrank, her tumors. Alicia wasted no time in capitalizing on her good health. After years of exhaustion, she spent the next 15 months kicking her career into gear. She started her own Internet radio show, modeled for local boutiques and did commercials. A side effect of her latest treatment gave her a unique look: “My hair, my eyelashes, everything, turned bright white,” she says. Strangers stopped her on the street to compliment her on her striking pixie hairdo.
Alicia had come a long way since chemo first took her hair — and her spirit: “Cancer gave me the confidence to be bold. I’m like, Who gives a crap what people think of me, as long as I love myself?” Her attitude drew many to her, including on social media: In 2013, a handsome, dimpled bridge worker from New Jersey commented on one of her Instagram pictures, and the two struck up a flirty chat. His name was Andres Silva. “Our first date lasted six hours,” Alicia says. “We fell in love pretty quickly.” The two are still going strong. “The day I met her, I knew she was special,” says Andres, 39.
Taking a Leap
Alicia relocated to the New York City area for more treatment, which put her closer to Andres — a good thing, given what lay ahead. In March 2015, scans revealed that her latest treatment had stopped working. “I was devastated,” says Alicia. “I couldn’t believe it was happening again.” But with Andres at her side, Alicia pressed on and asked her doctors at Mount Sinai Hospital in New York City about joining her third trial. Often patients who have been treated exhaustively, as Alicia had, don’t fit the profile researchers are looking for, but Alicia was admitted to a trial that combined radiation and an immunotherapy drug, Keytruda, at Penn’s Abramson Cancer Center in Philadelphia.
Immunotherapy has been showing real potential in prolonging lives (see below). “I was so excited to try it,” Alicia says. The American Society of Clinical Oncologists recently hailed Keytruda and drugs like it as the “cancer advance of the year.” (Last year, the drug sent former President Jimmy Carter, 91, into remission from advanced melanoma.)
Alicia received her first IV infusion of Keytruda last September. In February, about a month after her sixth and final dose, a PET scan showed mixed results. The tumors throughout her abdomen had not grown, a sign she might be responding to the drug. But, troublingly, there were now lesions in her brain, one of which required emergency surgery to remove. Alicia, brave as ever, again exceeded her doctors’ expectations: She was home with Andres a week after surgery.
Once she’s fully recovered, Alicia hopes to be able to continue taking Keytruda. If not, there may be more trials she can join: Research in the field is ongoing. “We’re in an explosion” of promising new cancer treatments, says David Agus, M.D., a professor of medicine and engineering at the University of Southern California and author of the new book The Lucky Years. “Literally every week or month in the past year, new discoveries were made.” Among the most exciting possibilities for pancreatic cancer: Scientists have identified four subtypes of it, a discovery they hope will lead to more targeted treatment.
Alicia has survived many years beyond what doctors expected, seven years longer than the average pancreatic cancer patient. She and Andres remain positive, but they are not unrealistic. While Andres “has told me he wants me to be his wife someday,” Alicia says, the pair have had difficult conversations. “Recently we talked about the fact that I may not be here forever, or very long,” Alicia says. “Andres and I both really believe in God. We believe He’s got me.” If she’s able, she says she’d like to open up her own photography business, become a pilot or skydiving instructor and be a mom. She’s got plenty to look forward to on the immediate horizon, too. This spring, she’ll be a bridesmaid in her sister’s wedding, and her 32nd birthday is in July. “I don’t know what we’re doing yet, but it’s going to be epic,” she says.
No matter what, Alicia is determined to live well, she says. “Cancer may take your hair and your eyelashes, it may take a lot of things, but it doesn’t have to take your heart or your hope or your joy,” she says. “God made it possible for me to get this far. I don’t want to give up.”