Plenary HallMaking lung cancer visible
Plenary HallMaking lung cancer visible
Janet Freeman-Daily has metastatic non-small cell lung cancer. If her original prognosis were accurate, she'd be dead now. She is still here thanks to the power of social media and clinical trials: she relies on social media as well as her doctors to keep her informed of new research and treatment options, and she relies on clinical trial drugs to keep me alive.
In early 2011, Janet saw her doctor about a nagging cough she'd had for a few months. He prescribed antibiotics. She had never smoked anything, and she was in good physical shape and exercised regularly. A few weeks later when her family returned from a trip, they all had respiratory infections. Her husband and son recovered in a week's time, but her cough persisted. She went back to the doctor, who gave her more antibiotics. After a few more weeks with no relief, the doctor ordered a chest x-ray, then a CT scan. As she arrived home from the clinic, she received a call from her doctor telling her she had a suspected carcinoma in her lung. Two days later, she had a diagnostic bronchoscopy. On May 10, 2011, a Tuesday evening, the pulmonologist told her she had advanced lung cancer.
Janet became an ePatient immediately after her diagnosis. An engineer by training (with degrees from MIT and Caltech), she found learning about her disease gave her some sense of control in an out-of-control situation. She had thought that since she lived a healthy lifestyle and wasn't a smoker, she didn't need to worry about lung cancer (LC). She discovered the five-year survival rate for LC is only about 16 percent—among the lowest of all types of cancer—and has changed little in the past 40 years. To learn more about her disease, she joined an online LC support community.
She was determined to be one of those 16%. She wasn’t a candidate for surgery, so she agreed to the most aggressive lung cancer therapy available. She had two different chemo regimens, two different radiation protocols and two recurrences, each within a few months of completing chemo.
Online Janet heard about a clinical trial that tested for ten mutations in LC tumors. She liked the idea of contributing in some small way to LC research, so after her first recurrence she looked up the contact person on clinicaltrials.gov and arranged to have her biopsied tissue tested at University of Colorado Hospital (UCH). Unfortunately, she had none of the ten mutations. Another LC ePatient suggested that because she was young (55), healthy, never smoker with adenocarcinoma, and tested negative for the more common mutations, she fit the profile of patients who had a new mutation called ROS1. She asked her oncologist about ROS1 testing, but he hadn’t heard of it (the research had been published just nine months earlier). After her second recurrence, she contacted UCH again, and learned they were now testing for additional mutations. UCH found her tumor was ROS1 positive, and had an opening in a clinical trial for a targeted ROS1 LC drug. Given the promising preliminary results of the trial, her oncologist decided it was a better option than more chemo. She sent her medical history and scan CDs to UCH, then flew to Denver for two weeks, hoping she’d pass the screening and be accepted into the trial. She took my first Xalkori pill November 5, 2012, and she's been NED since January 2013.
She is not cured. The pills she takes twice daily only suppress the cancer; eventually she will develop resistance to the drug. No one knows for sure how long she will live, but her clinical trial oncologist gives her 70% odds she'll make it to 2016. It’s an odd existence, living from scan to scan. Yet she is content living with lung cancer as a chronic illness, and hopeful that when this trial drug stops working, another will become available. She will be either in a clinical trial or on chemo for the rest of her life.
Janet believes LC patients need to learn about treatment and clinical trial options that might improve their survival time and quality of life. The public needs to learn that anyone with lungs can get lung cancer.
In the time she have left, she is using her skills to help others who have LC, and increase the awareness of LC among everyone else. In her previous career in aerospace systems engineering, she was a “technical translator” of sorts: She researched science and technology developments and helped others understand how these developments could benefit them. Now she does the same for the experience and science of lung cancer. Her days are spent tracking developments in LC research and treatments, supporting and informing LC ePatients and caregivers online and in person, and raising awareness through writing, blogging and public speaking. She attends and reports on medical meetings as a Patient Advocate, and is one of the founders and moderators of the Lung Cancer Social Media (#LCSM) community. Through these activities, she seeks to foster collaboration among LC patients, caregivers, advocates, healthcare providers, and researchers with an aim to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide.