Stage IV ALK Non-Small Cell Lung Cancer: Lindsay's Patient Story
This lung cancer diagnosis at a glance
- Stage at diagnosis
- Stage IV
- Subtype
- Non-Small Cell Lung Cancer
- Biomarkers
- ALK-positive mutation / ALK rearrangement
- Sex
- Female
- Spread to
- brain; liver; bone; kidneys; lungs; leptomeninges/brain and spinal fluid
- Treatment
- targeted therapy, radiation and supportive care
- Outcome
- Responding Well
Treatment course, step by step
- Initial plan included brain/other radiation and chemotherapy while biomarker testing was pending
- ALK-positive results shifted treatment to targeted therapy
- Started Alectinib/Alecensa 1200 mg daily in April 2022 with rapid response
- By September 2022, the drug had stopped working, with ICU admission and spread to the brain/spinal-fluid lining
- Lorlatinib/Lorbrena then produced another rapid response and continued ongoing
- Local radiation treated a brain tumor and bone spots in the cervical spine, thoracic spine, and left hip
- Scans continued every 2-3 months.
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.
Where this story comes from
This is a lay summary of an account first published by The Patient Story. Read the original in full
These are lay summaries of published cancer stories, for information only. No two cancers behave the same way, and nothing here predicts your own diagnosis or replaces advice from your oncology team.