Introduction

Let me begin by detailing the purpose of this blog. I am a 33 yr old man with metastatic pheochromocytoma/paraganglioma. I've been living with the disease for 10+ years and during that time I've been treated with MIBG, Sutent, Azedra, multiple rounds of radiation, and many surgeries (e.g., back, spine, femur, tibia, aorta). I'm at the point now where the disease has turned more aggressive, as what ultimately happens with most SDHB patients, and so I'm going to try CVD chemotherapy. As I prepared for CVD I could find little more than anecdotal information detailing the experience. My goal is to share my experience so that others may better prepare themselves for this journey.