What happened, in summary

Lindsay Wagner was 42 when side pain, chest discomfort, and a year-long cough led her to the ER. Doctors first suspected gallbladder disease, pneumonia, or ovarian cancer because a CA-125 test was elevated and imaging showed liver lesions. A liver biopsy changed the diagnosis: she had Stage IV non-small cell lung cancer, despite never smoking. Further testing showed disease in the brain, liver, bones, kidneys, lungs, and later the brain and spinal fluid. Biomarker testing found an ALK-positive mutation.

While the team was preparing for radiation and chemotherapy, the ALK result allowed Lindsay to start targeted therapy instead. She began alectinib/Alecensa in April 2022 at 1200 mg daily, and within about 2 weeks, almost all visible cancer was gone or stable. By September 2022, it stopped working. She was hospitalized in the ICU with severe progression, including hundreds of tiny brain lesions and leptomeningeal disease.

Lindsay then started lorlatinib/Lorbrena, which also worked within about 2 weeks. The side effects were significant, including hallucinations, fatigue, edema, high cholesterol, cough, dizziness, and vision changes. As of September 2024, she remained on lorlatinib. Her lungs, liver, and kidneys were stable, while individual brain and bone spots were treated with radiation and followed with scans every 2 to 3 months.