Stage IV ROS1 Non-Small Cell Lung Cancer: Lysa's Patient Story

What happened, in summary

Lysa was 40, raising 2 children, working, and finishing college when severe mid-back pain during travel led to a Stage IV lung cancer diagnosis. At first, an ER visit treated the pain like a muscle problem, but the pain kept returning and eventually became so severe that she needed help getting through an airport. Back home, another ER evaluation showed lung cancer that had already spread to her spine. She immediately thought about whether she would live long enough to raise her children. Lysa initially responded well to chemotherapy. Biomarker testing was not successful at first because 2 needle biopsies did not provide enough tumor material. After progression about 15 months later, she switched oncologists and had another procedure to obtain tissue. In 2013, after living with lung cancer for about 18 months, she learned the cancer was ROS1-positive. That result allowed her to move to targeted therapy and stop chemotherapy for a time. Later, chemotherapy was added to the targeted therapy to help keep her stable until another drug option became available. She remained stable on that combination for about 5 more years, totaling about 10 years on her first targeted therapy. After later progression and a biopsy on her 50th birthday, she joined a clinical trial. As of November 2025, her scans were stable, she felt well on the pill, and she had lived to meet her first grandson.