In March 2011, Janet Freeman-Daily was about to take a long family trip to China. She’d been coughing for a while, so she asked her doctor for an antibiotic as a precaution before leaving. Even so, she came back in May with a respiratory infection that wouldn’t go away.
Her doctor ordered an X-ray and then a CT scan. “Before I got home, they called and said they’d like to do a bronchoscopy,” Janet says. The scan revealed a 7-cm mass in her left lung, and biopsies showed it was non-small cell lung cancer (NSCLC) and that it had spread to several lymph nodes.
One of the nodes with cancer was between her lungs, ruling out surgery. Likewise, targeted therapy was not an option at the time—her tumor was negative for EGFR and ALK, mutations that are more common in younger women who, like Janet, have adenocarcinoma and are never-smokers.
So she began concurrent chemotherapy and radiation, and at first this aggressive treatment seemed to be a tremendous success. Her tumor shrank 90% and the lymph nodes in her lungs looked cancer-free. But then the cancer spread to lymph nodes near her collarbone.
Janet needed a few months to recover from her initial treatment and during that period, a new tumor grew on her neck. “My extended family gathered for what we thought might be my last Thanksgiving,” she says.
In January 2012, she started another kind of chemotherapy followed by more radiation, and once again this treatment initially looked successful. All of her original cancer was gone. But once again she got more bad news: her next positron emission tomography (PET) scan showed two nodules in her right lung, which had been cancer-free.
Then her luck turned. Earlier, Janet, who lives near Seattle, had enrolled in a clinical trial in Denver that screened lung cancer patients for multiple mutations. She’d tested negative for all 10 that were screened at the time. But she was grateful she’d been able to participate and, while visiting her nephew in Denver in September, she got to thank the lead researcher in person.
The researcher had good news: they were now testing for additional mutations. He still had some of her biopsy slides left, and found that her tumor was positive for a mutation called ROS1. Even better, Janet had just heard about a clinical trial for lung cancer patients with ROS1.
She didn’t qualify for the trial, though, because her known tumors were gone and the new nodules were too small to biopsy. “I had to wait a month for them to grow,” Janet says. Grow they did and in November 2012 she joined the ROS1 trial.
The trial was of Xalkori, a targeted therapy that was already U.S. Food and Drug Administration (FDA)-approved for NSCLC patients with ALK mutations. And Janet benefitted almost immediately. Her first scan, eight weeks into the trial, showed no evidence of cancer. “I was very fortunate,” she says.
Janet is now three years into the ROS1 trial and continues to have no sign of cancer. If Xalkori stops working for her, she hopes to qualify for another trial. Three new trials for ROS1 lung cancer are already in progress. “There are a lot of options now, unlike when I was first diagnosed,” she says.
To learn about as many of these options as possible, Janet recommends getting a second opinion. “Not every doctor knows them all,” she says. She also recommends tapping into online forums, which is where she heard of the ROS1 trial she’s in. “If I hadn’t learned about it, I’d be dead now,” she says, explaining that most lung cancer patients die within a year.
Knowing firsthand how much sharing helps others, Janet began blogging and leading Twitter chats about lung cancer. She researches and explains lung cancer treatments, applying skills she developed during her career in aerospace systems engineering at Boeing, where she helped develop new products. “I researched a scientific or engineering subject, described it to others in less technical terms, and helped them understand how this new gizmo could help them,” she says.
She also speaks out, including at Stanford Medicine X last year, against the stigma of lung cancer and the need to raise the disease’s visibility. “All you need to get lung cancer are lungs,” she says, adding that lung cancer is the leading cause of cancer death and that one in four lung cancer patients are never-smokers.
In addition, Janet is a patient advocate. Her causes include raising awareness of mutation testing, and patients’ rights to their tissue samples. “People don’t own their tissue samples and have no say over what happens to them,” she says. “Hospitals can sell them.” These regulations are now up for review.
As involved as she is with lung cancer openness and advocacy, Janet also has a rich life beyond cancer. Most recently, she attended the 2015 World Science Fiction Convention, and she and her husband took a two-week river cruise from Amsterdam to Budapest. Janet is also, as she puts it, owned by two cats: Admiral Dufus and General Nuisance.
Follow Janet on Twitter and on her blog Gray Connections, and join the Lung Cancer Social Media tweetchats she cofounded and comoderates at #LCSM.