A livestock-poison-turned-drug might save her from endless cancer surgeries. But if she helps test it, could she afford to keep taking it?
PHILADELPHIA — What propelled Kaylene Sheran up to the microphone was an overwhelming exhaustion of surgery. At 19, she’d had so much of her surface excised that she was sometimes surprised to have any skin left. It was true of many others in the room. They grew tumors the way some people grew freckles — not in great constellation-like splashes, but in a creeping multitude. The more frequently they checked, the more basal cell carcinomas they’d find.
Sheran didn’t count how many skin cancers she’d had. It would’ve taken too long, and the number would’ve been too scary. In a sense, she’d grown up as much in the dermatologist’s chair as she had at her parents’ house in East Boston. When she was little, the doctor would put her to sleep for the surgeries. She had nightmares of the anesthesiologist’s mask, of going under and never waking up. When she got older, the clinician would inject the area with a numbing agent that didn’t actually make her numb; she’d stay painfully alert as they sliced away tumors with a scalpel.
Those nicked-off bits of her were frozen and inspected under the microscope. If the edges were healthy, her doctor could patch her up; if the borders were cancerous, he’d take off the temporary gauze and keep cutting. Sometimes, she stayed all day. Even then, it wouldn’t be long before she was back. “I’m kind of in a battle with my own body,” she said.
That’s why Sheran was here, on a sunny June day, in the windowless ballroom of an airport hotel, where a Stanford dermatologist named Dr. Jean Tang was presenting with the patience of a schoolteacher and the conviction of a priest. As an emissary of a company called PellePharm, Tang was exhorting the assembled crowd to volunteer for a trial that involved daubing their faces with a new experimental drug: patidegib.
The occasion was the 2019 national conference of the : the rare moment when people with this genetic disorder were not the exception but the rule. They came mostly for the solidarity. When else could they find themselves in a throng that truly understood the terror of their never-ending surgical whack-a-mole? Where else were they to swap tips and tricks about their other — the predisposition to heart tumors that weren’t cancerous, the trend of brain tumors that were, the skeletal abnormalities, the aching jaw cysts?
