Janet Freeman-Daily helps put patients at the center of lung cancer research.
From Cancer Today Magazine
IN MARCH 2011, Janet Freeman-Daily had a slight but persistent cough. She was about to take a family trip to China, so she asked her doctor for an antibiotic as a precaution. On the flight home from China, however, she and her husband, Gerry, began showing signs of a respiratory infection. His symptoms cleared up, but hers didn’t. Then she started coughing up blood. “We knew something was wrong,” Gerry says.
Freeman-Daily went back to her doctor, who once again prescribed an antibiotic. But her cough kept getting worse. On May 4, 2011, she had an X-ray, which revealed a 6-centimeter mass in her left lung.
Freeman-Daily had a CT scan the same day and received the results by phone just as she arrived at home. “I was walking in my front door, and they told me it was suspicious for carcinoma,” says Freeman-Daily, who was then age 55. On May 6, she had a bronchoscopy, a procedure in which a tube with a small light and camera is inserted into the trachea. An analysis of the biopsied tumor specimen showed she had aggressive non-small cell lung cancer.
Lung cancer is the leading cause of cancer death in the U.S. and accounts for a quarter of all cancer fatalities, according to the National Cancer Institute (NCI). An estimated 234,030 people will be diagnosed with lung cancer in 2018, and an estimated 154,050 will die of the disease. Smoking causes most cases of lung cancer, but like Freeman-Daily, many people with the disease have never smoked. Overall, the prognosis for lung cancer patients is poor. The five-year survival rate for all types of lung cancer is only about 18 percent.
A Background in Science
Janet and Gerry live south of Seattle in Federal Way, Washington, not far from where Janet was born and raised in Tacoma. She was heavily influenced by her father, who was a medical doctor and engineer. “He very much encouraged my interest in math and science,” she says. That interest brought her to the Massachusetts Institute of Technology in Cambridge, where she majored in mechanical engineering.
After graduating in 1978 and returning home to Washington, she joined the company that her grandfather had founded and that her father then ran, which designed and manufactured autopilot systems for fishing boats. A few years later, Freeman-Daily moved to Los Angeles to take a job with the Space and Communications Group at Hughes Aircraft, where she worked on communications and remote sensing satellites. Her employer paid for her to attend graduate school at the California Institute of Technology in Pasadena, where she received a master’s degree in aeronautics in 1984, as well as an engineering degree in aeronautics in 1986.
In 1989, Freeman-Daily’s cousin Frances, a single mother who lived in Connecticut, died of glioblastoma, an aggressive form of brain cancer. Freeman-Daily, who was 33 and unmarried at the time, adopted Frances’ 3-year-old son, David, and returned to the Seattle area. “I really wanted to come home—I needed the support of my family,” she says. There, she joined Boeing’s Defense and Space Group, where she met her husband in 1991. In true Pacific Northwest spirit, she and Gerry were married on a snowbank on the slopes of Mount Rainier a year later.
Before starting treatment for her lung cancer, Freeman-Daily needed to take a month of antibiotics to clear up severe pneumonia—a common and sometimes fatal infection among lung cancer patients. In June 2011, Freeman-Daily was healthy enough to start treatment.
After undergoing intense radiation and chemotherapy, Freeman-Daily’s body needed a chance to mend before undergoing further cancer treatment. While she was recovering, though, things got worse. In October, a lump appeared on her neck near her collarbone and ballooned to 9 centimeters. “The cancer was getting out of my chest,” she says. “It was quite a shock.”
Clinical Trials Pay Off
To learn more about her disease, Freeman-Daily joined an online patient forum, which is how she learned about a clinical trial called the Lung Cancer Mutation Consortium Protocol, which offered tumor testing for abnormalities in 10 genes in lung cancer tissue. She hoped that her tumor would test positive for a genetic abnormality that could be treated with a targeted therapy.
Daily learned that the University of Colorado Cancer Center in Aurora was accepting patients for the trial, and they agreed to test her previously biopsied tumor tissue even though she was unable to travel to the center. Unfortunately, her test came back negative for all the abnormalities. Even so, the genetic testing heralded a turning point for her.
Then Freeman-Daily got more bad news. A PET scan in September 2012 showed that her collarbone area was clear, but her right lung, which had previously been unaffected, had two new hot spots that her doctors suspected were cancer. “We really didn’t know if I was going to make it,” she says.
After getting this disheartening news, Janet and Gerry visited her nephew in Denver. While there, she realized how close she was to the University of Colorado Cancer Center, so she contacted the genetic testing trial coordinator to arrange a time to stop in to personally thank the team. There, she met Paul Bunn, the oncologist who had agreed to test her tumor samples. This is where luck enters Freeman-Daily’s story.
Bunn told her that other tests were now available for more genetic abnormalities, and that he still had some of her tumor sample left. This time, Freeman-Daily’s cancer tested positive for a mutated form of the ROS1 gene, an abnormality thought to be present in just 1 to 2 percent of lung cancer cases.
In November 2012, Freeman-Daily enrolled in an early-phase ROS1 clinical trial for Xalkori (crizotinib), a drug that had been approved by the U.S. Food and Drug Administration (FDA) in 2011 to treat patients with late-stage lung cancer who have an abnormality in the ALK gene. Eight weeks after she started Xalkori, the hot spots in Freeman-Daily’s right lung were gone, and she has had no evidence of cancer since.
Building Patient Communities
Now, Freeman-Daily’s focus is on helping other people with lung cancer. “My side effects are mild so I have a lot of energy. I feel I can make a real difference,” she says, noting that she is able to manage side effects of edema and pulmonary embolism with medications.
In 2013, Freeman-Daily teamed up with Deana Hendrickson, a patient advocate who lost her mother to the disease. The two met via an online patient network for lung cancer patients, and together they created a Twitter community called Lung Cancer Social Media Chat (#lcsmchat), which brings together patients, caregivers, physicians and researchers. The chats take place every two weeks and explore topics such as “when doctors disagree,” “advocacy and burnout” and “lung cancer research: why we need it and how we can get more.”
“Recruiting Janet is the best thing I ever did,” says Hendrickson. “She’s the heart and soul of LCSM Chat.”
In 2015, with the help of fellow lung cancer survivors Lisa Goldman, Tori Tomalia, Lysa Buonnano and the late Stuart Grief, Freeman-Daily co-founded another online community—a Facebook group called the ROS1ders. Pronounced “ROS wonders,” the group is open to people whose tumors have this abnormality. Now, the ROS1ders have a website and are harnessing their strength in numbers to drive cancer research.
This is where what Freeman-Daily calls the “patient power” of the ROS1ders comes in. Patients in the group volunteer to provide samples of their tumors to researchers, helping them establish more ROS1 models to test new approaches. The models will be available to all researchers, and all resulting data will be open access.
Freeman-Daily says she’s just doing what comes naturally. “How many people get to spend their lives doing something they love and that makes a difference in other people’s lives?” she asks. “I’ve found my purpose.”