How a targeted drug kept one patient alive 15 years — but failed to save her friends — SkimNews
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- Janet Freeman-Daily was diagnosed with advanced lung cancer in 2011 and became one of the first patients with a confirmed ROS1 mutation to receive crizotinib through a clinical trial, starting the drug on November 6, 2012, with no evidence of disease since.
- Janet Freeman-Daily co-founded The ROS1ders in 2015, a global patient group that launched the ROS1 Cancer Model Project in 2017, contributing to the creation of 12 new patient-derived cell lines for research.
- The ROS1ders organized the PRIME Summit to educate the community on ROS1 treatments and research, emphasizing patient-centered science and collaboration with nonprofits and researchers.
- Janet Freeman-Daily reported gaining 70 pounds on crizotinib and now takes a GLP-1 medication to manage weight, illustrating long-term treatment side effects that are rarely tracked in survival-focused cancer research.
- Janet Freeman-Daily noted that not all ROS1+ patients receive biomarker testing, have access to clinical trials, or respond to targeted therapies, and two of The ROS1ders’ founders have died despite treatment.
Why it matters: While crizotinib has kept Freeman-Daily alive for 15 years, many ROS1+ patients lack access to testing or effective treatments, and long-term side effects go unmeasured—highlighting a gap between survival metrics and real-world patient experience that affects thousands facing rare cancer subtypes.
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