Persistence paid off for Australian patient with cancer
Julie Randall likes to say she Googled her way to Providence Cancer Center from Sydney, Australia. She searched the globe for a clinical trial to battle her stage IV metastatic melanoma – and found it in Portland, Ore.
Days after celebrating her 50th birthday in June 2012, she collapsed from a seizure at her job at a marine resource organization. Tests revealed a brain tumor, which was removed promptly, and advanced melanoma that had spread to her lungs, liver, pancreas and beyond.
Searching the globe
Julie started chemotherapy, but despite the initial positive response, the mother of two had reservations. “I knew it wasn’t going to save my life,” she says. To make matters worse, her chemotherapy disqualified her from participating in a clinical trial in Australia.
With support from her husband, Scott, Julie began researching treatment options abroad. They found some promising studies, including one in Spain, but ultimately set their sights on Providence for its location in an English-speaking country and its mission. Providence billed itself as a caring, nurturing organization, she says. “That’s what it says on the internet, and we found out it was true.”
Never stop trying
For three months, Julie emailed incessantly with clinical nurse Chris Fountain, trying to secure a spot in the study. She was recommended a different drug she deemed too toxic. Concerns were raised about her being so far from home and sticking out the two-year trial. Meanwhile, she consulted doctors in Australia, one of whom agreed she needed to get to Providence. Julie was relentless. “I thought Chris was going to change his email address,” she laughs. But he never stopped replying.
Providence easily could have turned her away, she admits. After all, the chemotherapy was working. Then one day, she unexpectedly received a phone call from Providence to schedule her first appointment with Dr. Urba. “I dropped the phone,” she says.
Care 8,000 miles from home
Walter Urba, M.D., Ph.D, co-director of the Providence Melanoma Program, had become a household name in the Randall home. His phase II study was examining the efficacy of an anti-PD-1 drug that helps make cancer cells more vulnerable to attack by the body’s immune system. This is one type of treatment known as immunotherapy.
Julie sent her files to Providence and took a leap of faith: She had to stop chemotherapy six weeks leading up to the study. “Something inside told me that’s what I had to be doing,” she says. By the time the Randalls arrived in Portland in March 2013, new tumors had developed.
Julie started receiving intravenous treatment every two weeks. She had no idea if the therapy was working until her first scan six weeks into the study. The initial results were good, not great. “I was relieved but I wasn’t jumping for joy,” she recalls.
In between scans, Julie and Scott explored the scenic Pacific Northwest. They visited Seattle and the San Juan Islands. They travelled to breathtaking destinations including Crater Lake National Park, Mount Hood and Bend. They frequented the Oregon coast so many times that they befriended locals in Cannon Beach. The Randalls also became good friends with Monique Matt, a volunteer at Providence Cancer Center, and her husband, Ralph, with whom they still keep in touch. “Portland is like our second home,” Julie says.
Six months into the study, Julie was responding remarkably well. Doctors began to wonder if she could respond any more, she says. Yet, every subsequent scan revealed improvements; the tumors continued to shrink.
Looking for a cure Down Under
Though the study appeared to be working, Julie was anxious to get home. She got the name of someone at Bristol-Myers Squibb, the pharmaceutical company supplying the drug on trial. Scott took a stab at the email address, and Julie sent a note pleading to access the therapy in Australia. “I didn’t know if the drug would keep working, and I didn’t want to spend my last years in Portland away from my family,” she says.
Julie sneaked back to Australia, determined to see her younger daughter graduate from high school. As Julie prepared to trek back to the U.S. eight months into the study, she received an email saying the drug would be made available to her on compassionate grounds in New South Wales, her home state. She became the first patient in the country to receive the drug, now called nivolumab (Opdivo), outside a clinical trial.
Three years have passed since Julie, now 53, first stepped foot inside Providence Cancer Center. Her daughters have grown up; the younger one is an interior designer and the older one is a dance teacher. Julie is back on the field playing touch football. She looks vibrant and healthy. You’d never guess that she’s still receiving infused immunotherapy every two weeks at the Melanoma Institute Australia.
“I’m always trying to get the doctor to say, ‘You’re cured,’ ” she says. But she has yet to hear the words most cancer survivors long for. However, she recently was told: I cure a third of my patients and you’re highly likely one of them. “That was a good day,” she says.
Paying it forward
Julie didn’t go back to work after her seizure. Nowadays, she devotes her time to helping others who are trying to get healthy. In 2015, she returned to Portland to speak at the “Creating Hope” luncheon, which raised $615,000 for Providence Cancer Center research.
And she’s become something of a local celebrity in health care circles. Someone new calls every few weeks, she says. Not long ago, she was advising a woman who was turned away from a closed study. Julie told her not to take “no” for an answer. The woman landed a spot as patient 31 in a clinical trial designed for 30.
Julie emphasizes the importance of learning as much as you can about the culture of the organization conducting the study. She wholeheartedly believes that you cannot do enough research and that you should never settle for one person’s opinion. “It’s a big wide world out there,” she says.