I Went to the ER With a Stomach Ache—Hours Later, My Life Changed Forever
Summary
A 34-year-old man went to the emergency room because of stomach pain and was diagnosed with a rare and advanced liver cancer called intrahepatic cholangiocarcinoma. After initial treatments failed, he used a special drug targeting a rare genetic mutation, which shrank his tumors and made him eligible for a liver transplant.Key Facts
- The man first thought his stomach pain was from something he ate but later suspected a gallbladder infection.
- An ultrasound and CT scan revealed several large cancerous masses on his liver.
- He was diagnosed with Stage 4 intrahepatic cholangiocarcinoma, a rare cancer in the bile ducts.
- His liver was covered with cancer, but it had not yet spread to other parts of the body.
- Standard chemotherapy did not stop tumor growth after three months of treatment.
- Genetic testing showed he had an NRG1 fusion mutation, a rare genetic change.
- He used an antibody drug called Zenocutuzumab, which targeted this mutation but was only approved for other cancers.
- The drug was expensive, costing over $77,000 per infusion, but it significantly shrank his tumors.
- Tumor shrinkage allowed doctors to consider him for a liver transplant, although insurance approval was a challenge.
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