Janet Freeman-Daily, a former aerospace engineer, faced a daunting diagnosis of lung cancer in 2011. At that time, prognosis for patients with lung cancer was grim; most succumbed within a year. Freeman-Daily, healthy and without known risk factors, shocked her family when diagnosed at age 55. Determined to take control, she immersed herself in research and discovered the potential of molecular testing for better treatment options.
Throughout her journey, Freeman-Daily endured numerous therapies. Initially deemed curable, she experienced setbacks, including a tumor spreading to her second lung after chemotherapy and radiation. Despite negative test results, her advocacy extended beyond her own treatment, aimed at finding new options for those like her. An online patient group ultimately led her to learn about the ROS1 mutation, a genetic alteration present in about 1-2% of non-small cell lung cancer cases.
Challenges arose when her local oncologist was unaware of the ROS1 testing. However, an unexpected opportunity presented itself. While visiting her nephew, Freeman-Daily learned a cancer facility nearby had developed a test for the mutation. With permission to test her tumor tissue, the results confirmed her mutation, qualifying her for a clinical trial of crizotinib. On November 6, 2012, she began this targeted therapy, subsequently achieving continuous remission since, although she acknowledges that she remains on the medication.
Freeman-Daily’s story is one of achievement, yet she emphasizes the stark disparities that persist in lung cancer treatment. Not all patients receive timely access to molecular testing, nor do many have physicians familiar with the specifics of their disease subtypes. Consequently, many face limited access to critical clinical trials and may not respond optimally to recommended treatments.
Her advocacy work led to the establishment of The ROS1ders, a non-profit aimed at supporting those diagnosed with ROS1+ lung cancer. This global community of patients and caregivers actively sought to enhance awareness and treatment options, inspired by their united experiences. Freeman-Daily points out that, while individualized treatment has extended her life, myriad challenges remain for individuals diagnosed after her.
Since 2015, Freeman-Daily has dedicated time to strengthen the ROS1 community. Initially connecting in a bar at an advocacy event, five individuals became champions for change, founding The ROS1ders to push for wider recognition and research into ROS1-driven cancers. They aimed to bolster collective knowledge, creating resources and educational materials to benefit patients at large. One significant initiative, the ROS1 Cancer Model Project, helped establish new patient-derived cell lines for research, promoting understanding of treatment resistance and drug development.
Freeman-Daily underscores the importance of community support. Such efforts, like their PRIME Summit, have fostered dialogue about needs within the patient population, bringing together individuals faced with similar diagnoses.
Despite her advocacy achievements, Freeman-Daily shares the somber reality of losing friends from the same illness. Living with ongoing treatment presents several burdens, including side effects that required her to reduce dosages of crizotinib. Even her weight gain presented additional challenges, prompting her to pursue further medical support.
"Quality of life for patients is often overlooked in cancer research," she states. While survival statistics are tracked, the day-to-day experiences of survivors ought to be a focal point in understanding the impact of long-term cancer treatments.
Freeman-Daily's commitment to advocacy stems from a deep-seated necessity for progress. The treatment landscape for ROS1+ cancer remains underdeveloped with unmet needs for patients. More research is essential to include patient perspectives early in clinical testing. Additionally, there’s a desperate need for clinical trials to emphasize patient-reported outcomes and ensure that sponsors consider the burdens of treatment. These elements are vital as the fight against cancer progresses, ensuring that the voices of patients extend beyond mere statistics.
The journey of Freeman-Daily exemplifies resilience in the face of adversity, representing both triumph and the ongoing struggle within the lung cancer community. As her advocacy continues, the resonance of her experiences aims to foster a brighter future for all impacted by ROS1-driven cancers.