Stage IV ALK Lung Cancer: Jake's Patient Story

What happened, in summary

Jake was 15 when severe migraines began in late 2012. For about 25 days, he hid the pain, took large amounts of Advil, and kept playing sports until his mother pushed for an MRI. The scan showed a golf-ball-sized tumor in his cerebellum. After brain surgery, doctors determined it was not a primary brain tumor; it was cancer that had started elsewhere and spread to the brain. PET and CT scans also showed disease in his lung and ankle bone, and Jake was diagnosed with Stage IV lung cancer. Initial options included removing half of his right lung or radiation. A second opinion at the University of Chicago changed the plan. His team discussed sperm preservation, tested the resected tumor, and found an ALK-positive mutation. That result allowed Jake to begin a daily ALK-targeted pill instead of immediately starting chemotherapy, helping him return to high school with fewer disruptions. Over the next 13 years, treatment continued: brain surgeries at ages 23 and 24, 5 brain-radiation treatments, radiation to the ankle bone, 12 weeks of proton therapy to the lung, a clinical-trial pill with close bloodwork monitoring, and 5 rounds of chemotherapy in 2026. As of May 2026, Jake was 28, living with metastatic ALK-positive lung cancer, running marathons, and advocating for biomarker testing and second opinions.