By JUSTIN POPE, AP Education Writer Wed Feb 20, 8:07 AM ET
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.
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.
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.
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.
Funding is certainly scarce. But there is also no basic infrastructure, not even a database of the disparate patients and doctors treating chordoma to organize a clinical trial.
Chordoma doesn't need another lab assistant. It needs a field marshal.
Josh and Simone are well-suited to work as a team. Simone raised Josh alone; when he was in high school, they both became mysteriously ill with what turned out to be a debilitating toxic mold infection, which forced them to move and forced Simone to give up her medical practice.
Josh responded by helping design a new way to assess mold contamination (work that made him a semifinalist in the prestigious Siemens Westinghouse science competition). He and Simone traveled to Washington to speak at press conferences and lobby Congress for tougher mold legislation (Josh says it's impossible to say whether there is any connection between the mold and his cancer).
The campaign failed, but they had learned to persuade, to organize, to talk their way past receptionists, to ask for what they needed.
"I think it was my mom's way of coping you see a problem that can be fixed and you do something about it," Josh says.
These days, Josh still works in Kelley's lab several days a week, but has cut back his hours. His focus now is the Chordoma Foundation, which he and his mother founded to push every aspect of chordoma research.
Last spring in Maryland, they sat in a room with dozens of scientists they had brought together to talk about chordoma, the first ever such meeting.
A "BioBank" is in the works, to help gather tumor material and ship the most promising cell lines to researchers who need them.
At Duke alone, Josh has helped recruit at least a half-dozen labs in fields like radiology, oncology, and genetics into the chordoma effort. More are ready to start if they can get the cell lines they need.
"For the foundation to go out and say, 'At 3 o'clock Wednesday afternoon someone's having a biopsy and we need to capture that information,' it's tremendous," says Neil Spector, another cancer researcher at Duke and the VA whom Josh enlisted to work on chordoma. "I've been approached by a lot of people who have diseases who are desperate and say, 'Can you help find a cure for this disease or that disease?' but really don't have an idea of what it takes." Josh and Simone, he says, have done their homework.
The challenge is to prod the research bureaucracy to catch up with the evolving conceptions of cancer itself. Experts like Spector increasingly see the differences between cancers in molecular terms, not based on where they occur in the body. That boosts the argument that research on rare cancers like chordoma could be more broadly useful.
"If you were to ask me two years ago I would have said maybe a decade, seven years if we're lucky," Kelley says, when asked about the prospects for effective treatments. "That timeline I think has been shortened a lot. We're going to understand the genetic changes that occur in chordoma in the next year."
The next step is to see if any known compounds even drugs already in use might show progress against those genetic defects. The foundation recently arranged for a cell line to be exposed to a battery of 2,000 substances in the library of FDA-approved compounds at the National Institutes of Health. It's a shot in the dark, but a start. With luck, something already on the pharmacy shelf will match up. If not, drugs will have to be developed from scratch, and that will take longer.
Josh's health is good, but he knows the future is uncertain.
"The opportunities at Duke are just astounding and we are making rapid progress," he says. "But a lot of times I feel like it's not fast enough."
Every day is a race, and it is exhausting. He and Simone have raised $300,000 in a few months en route, they hope, to $3 million over the next few years.
When a recent philanthropy competition on the social networking Web site Facebook.com promised $10,000 to groups that attracted the most total donors, Josh barnstormed Duke's campus, hitting sorority meetings and big lecture classes, offering free doughnuts and pizza to anyone who would make a donation. Altogether, the contest netted $25,000 for the foundation.
"The weeks feel like days," he says. "Time is just flying by. I feel like we can never do enough. I'd like to somehow cram 48 hours into 24 hours. You prioritize and try to make the most of the time you have."
He lives in a dorm, greets friends on campus, acts like a regular student. But he isn't. His friends still belong to the carefree world he remembers from freshman year. Josh is terribly grown-up. He is getting the best education of any of them but would gladly trade it if he could.
Duke has given him the semester off from classes as part of a pilot public service project. He misses the giddy intellectual excitement of that first semester. But classes that won't help him get chordoma cured just take up precious time.
"For me, being here now has turned into a way to save my life," he says, "and save the lives of lots of other people."
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