Janet Freeman-Daily, a former aerospace engineer, marked her 15-year survival milestone from advanced lung cancer, attributing her longevity to early access to a targeted therapy and molecular testing that identified a rare ROS1 mutation in her tumor.
Freeman-Daily received a lung cancer diagnosis in 2011 when survival rates for the disease were typically measured in months. After initial chemotherapy and radiation, her cancer metastasized despite treatment. Through an online patient community, she learned about ROS1 rearrangement, a driver mutation occurring in 1% – 2% of non-small cell lung cancer cases. When her local oncologist was unfamiliar with the condition, Freeman-Daily independently pursued testing at a research center in Denver. Testing confirmed her tumor carried the ROS1 mutation, and she secured enrollment in a clinical trial for crizotinib, a targeted drug, which she began taking on Nov. 6, 2012.
Since starting crizotinib, Freeman-Daily has maintained no evidence of disease on all subsequent scans. She founded The ROS1ders in 2015 alongside other ROS1-positive patients to improve outcomes through community support, education, and research initiatives. The organization co-created the ROS1 Cancer Model Project, which developed 12 new patient-derived cell lines for research into drug resistance and treatment development.
However, Freeman-Daily highlighted persistent challenges in the ROS1 cancer space. Some founders and members of The ROS1ders have died, and long-term treatment carries significant side effects requiring additional medications to manage. She emphasized that while survival statistics are well-tracked, quality-of-life outcomes for long-term survivors receive less attention. Freeman-Daily called for greater incorporation of patient perspectives in research, expanded use of patient-reported outcomes in clinical trials, and increased accountability from drug sponsors regarding toxicities associated with their treatments.
Article Attribution | Read More at Article Source
Article summary produced by Claude AI