Stage IV ALK Non-Small Cell Lung Cancer: Dan's Patient Story

What happened, in summary

Dan was a young father with 2 daughters when symptoms that seemed like a stubborn cold began in November 2018. The cold did not go away. Instead, he developed shortness of breath, chest tightness, and lost his voice. Steroids and inhalers did not help, and no additional testing was ordered until he became so winded chasing his daughter across a dance studio that he could barely take a few steps. A telemedicine visit sent him to the emergency room. CT imaging showed a large mass deep in his chest, and doctors first suspected lymphoma. About 10 or 11 days later, further testing showed non-small cell lung cancer. Staging workup confirmed Stage IV disease, and biomarker testing identified an ALK-positive / ALK-rearranged driver. Treatment started with 5 radiation sessions to the largest chest/mediastinal mass to relieve the main disease site. Dan then began ALK-directed targeted therapy with Alectinib. Side effects required ongoing monitoring, including monthly blood tests and attention to liver function, but the treatment allowed him to keep parenting, coaching soccer, and working from home. As of November 2022, Dan had stable scans since spring 2020 and was living with Stage IV lung cancer while advocating for biomarker testing and honest conversations with children.