Stage IV ALK Lung Adenocarcinoma: Shirley's Patient Story

What happened, in summary

Shirley was 34, working as a translator in Southern California, when a persistent cough during the COVID-19 pandemic became something much more serious. She went through multiple rounds of antibiotics and testing, but the cough continued and severe back pain developed. A CT scan eventually showed a mass. Months of additional procedures followed, including 2 bronchoscopies and wedge resection surgery, before Shirley learned she had lung adenocarcinoma with an ALK mutation. Her diagnosis was Stage IV lung cancer. She changed hospitals, navigated insurance decisions after marrying her longtime boyfriend, and began chemotherapy. The side effects were severe, including major hair loss, swallowing problems, infections, and hospitalization. Genetic testing then opened a new path: an oral ALK inhibitor targeted therapy. That pill gave Shirley about 2 years of relative stability and a better quality of life. In 2023, the cancer began progressing again, and her first targeted therapy stopped working. In July 2024, Shirley joined a clinical trial for a fourth-generation ALK inhibitor. The new medication caused minimal side effects, and her tumor was stable. As of December 2024, Shirley was living with incurable ALK-positive lung cancer while relying on humor, her husband, and an ALK patient community for support. She also used Instagram to connect with others and remind patients that statistics do not define them.