Battling his own cancer, in and out of the lab

updated 12:52 a.m. ET Feb. 20, 2008

Usually, he just finds a way to move faster, to cram more into the day. But some things cannot be rushed, and that is one of the hardest parts.

Josh Sommer waits for the test tubes to warm up to 37 degrees Celsius, for the centrifuge to spin them around, then for the cells inside to settle properly to the bottom. Last year, one batch took three excruciating months to get right.

This cinderblock laboratory inside a Veterans hospital research building is not where the 20-year-old Duke University junior expected to spend much of his college career. He came to Duke to study environmental engineering, not biology.

But for what Josh now needs, a million things need to be done, and running these cultures is one of them. So he is here, growing and nurturing cells, one small but vital part of an effort to help others understand the genetic mechanisms that make them misfire.

So he is patient, because a mistake could set the project back a week, and thousands of lives are at stake.

One of them is his.

Blissful start to college
Freshman year starts blissfully. It begins with a 10-day camping trip in the Smoky Mountains. He is surrounded by new, smart friends. When classes start, the conversations spill out into the quad afterward.

The terrible headaches come over Christmas break. Josh undergoes testing before returning to school.

His mother, Simone, gets the phone call at her home in Greensboro. A doctor herself, she takes the news from a fellow physician calmly, clinically. Then she hangs up and goes to pieces, as any parent would.

She gets in the car and drives to campus with Josh’s dog Dassi. Josh is on his way to the climbing wall when his cell phone rings. “I’m in Durham and we need to talk,” Simone tells him.

He is puzzled, then remembers the recent MRI. His heart thumps. When he meets her at the dorm, she is holding back tears.

A cancer diagnosis is devastating, whatever the type. Nearly 220,000 new cases of prostate cancer are diagnosed each year in the United States, 178,000 of breast cancer, 154,000 of colorectal cancer.

Chordoma — the cancer Josh learns he has — is a one-in-a million disease. Just 300 people get the terrible news each year, not even one per day. It strikes all ages, at different spots along the spinal column. The tumors can be removed, but the cancer is relentless. Chemotherapy doesn’t work. Life expectancy is around seven years.

The MRI shows Josh’s tumor is in a tough spot, in a bone inside his skull. It extends onto his brain stem and wraps around several arteries. There are two surgeries, then weeks of recovery in the hospital. He and Simone pass the time reading whatever they can about the disease.

There isn’t much. The massive apparatus of medical research — pharmaceutical companies, foundations, universities, government agencies — is utilitarian. High-prevalence diseases are at the front of the line, rare ones like chordoma usually at the back.

But then, a stroke of good fortune. It turns out that the only researcher in the country with a grant to study chordoma happens to be at Duke, working in a VA lab across the street from campus.

They meet Michael Kelley in his office on a Sunday. They talk about the research and where it might go next. Kelley says he’s willing to proceed, but he’ll need things like equipment and staff to work in his lab.

Well, Josh says, you can put me to work.

Outpacing the disease
He hasn’t taken a biology class since ninth grade, but catches on quickly. In high school, a national newspaper named him to a top-20 academic all-star team for the whole country.

It’s an odd experience, trying to nurture cells to help others figure out how to kill them. As he learns more and more about chordoma, Josh tells his mom the science fascinates him. He just wishes it wasn’t life and death.

Josh isn’t the first person to work in a lab to find a cure or treatment for his own disease. A cystic fibrosis victim named Jeff Pinard has done work on the genetics of his affliction. A Tulane medical student named Andy Martin studied a cancer called sinonasal undifferentiated carcinoma, which is even rarer than chordoma.

They’re uplifting stories. But Josh sometimes worries they distract people from the urgent reality. Andy died in 2004. Josh has become friends with a local 12-year-old with advancing chordoma. He knows what the disease does.

“I guess the way I look at it is that there will be a time for every disease when one can in essence outrun their disease,” Josh writes in a late-night e-mail to a reporter who had been spending time with him.

“For Andy his disease was too fast and the science too slow.” For Jeff, “science has just barely outpaced his disease. I hope to be in Jeff’s category rather than Andy’s.”

By fall, Josh is back on campus and working in Kelley’s lab. He has realized that this won’t be enough. He and Simone know something much bigger is needed.

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In their research, they discover something surprising: The biggest obstacles to a cure aren’t necessarily scientific ones. They’re human.

Numerous researchers at Duke, in Boston and in Europe are ready to work on chordoma, but don’t have the cell lines they need. Meanwhile, the tumors needed to produce those lines are just being thrown away by the surgeons who remove them.

Doctors aren’t talking to one another. Various neurosurgeons, orthopedic surgeons, and others have experience removing chordoma and trying to treat it. But the groups have never sat down and compared notes.

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