Diagnosed with lung cancer in 2011 at age 55, Janet Freeman-Daily—a former aerospace engineer—stood out as an exception: younger than most cases and free of typical risk factors. Back then, survival beyond a year after diagnosis was rare for the majority of patients with her condition.
She was considered curable and was treated with chemotherapy combined with radiation. However, during a treatment break, a 3-inch mass grew on her collarbone. Freeman-Daily arranged to get molecular testing through a clinical trial, but all tests were negative.
A person in an online lung cancer patient forum informed her about the possibility of cancer driven by an ROS1 rearrangement, which occurs in 1%, 2% of non-small lung cancer cases. Freeman-Daily asked her local oncologist about ROS1 testing, but he didn’t know anything about it.
Freeman-Daily’s situation changed when she visited her nephew in Denver and realized the cancer center that had done her molecular testing was nearby. She emailed to ask if she could drop in to say thank you, and the researcher who had led the trial met her in the lobby. He told her his lab had developed and validated a test for ROS1, and they had some of her tumor tissue left.
Access to Targeted Therapy
Freeman-Daily gave the researcher permission to test her remaining slides, and a few weeks later, he called to tell her her tumor tested wildly positive for ROS1. She was offered a spot in the ROS1 clinical trial and started a daily pill called crizotinib on November 6, 2012. She has had no evidence of disease on every scan since.
She has been able to manage her cancer and maintain a good quality of life. However, she notes that not all patients have the same outcome, and many face challenges in accessing biomarker testing, clinical trials, and effective treatments.
In 2015, Freeman-Daily met with other patients who had ROS1+ cancer, and they decided to take action. They started a global Facebook group, created a website, and began looking for research partners. This effort evolved into The ROS1ders, a global group of patients and caregivers that seeks to improve outcomes for all ROS1+ cancers.
The ROS1ders have co-created the ROS1 Cancer Model Project in partnership with nonprofits and researchers. The project has helped create 12 new patient-derived cell lines that have been widely distributed and used for research into acquired resistance, surface-omics, and drug development.
Challenges in Cancer Treatment
Despite the progress made by The ROS1ders, Freeman-Daily notes that living on treatment for years isn’t easy. She has had two TKI dose reductions and takes prescriptions to cope with side effects. She is also on a GLP-1 to lose weight.
Freeman-Daily’s experience highlights the challenge of living on the cutting edge of cancer treatment. While research is focused on tracking survival stats, quality of life for survivors is often overlooked. She emphasizes the need for more research to incorporate the patient perspective early in the process and for clinical trials to use patient-reported outcomes.
At the STAT Summit in Boston, Freeman-Daily described her journey and the gaps that remain for patients who came after her. She emphasized the need for more research and better access to effective treatments, and her message resonated with the audience.
Freeman-Daily’s 15-year cancerversary is a milestone that highlights the progress made in cancer treatment. It also shows the need for continued research and advocacy to improve outcomes for patients with ROS1+ cancer.
Improving Quality of Life
The organization also hosts the PRIME Summit, which brings the community together to learn about ROS1 treatments and research. This event provides a platform for patients, caregivers, and researchers to share information and discuss the latest developments in ROS1 cancer treatment.
