ON THE OTHER HAND... (via Mike Daley):

cgi-free/getstory_ssf.cgi?f0055_BC_WSJ--DoctoringHimself&&news&newsflash-fin
ancial>A medical student takes on rare disease -- his own (AMY DOCKSER MARCUS, 4/1/04, The Associated Press)

Andy Martin stared so hard at the cells he was examining that the microscope left marks around his eyes.

A third-year medical student, Mr. Martin is a researcher in a cancer lab at Tulane University Health Sciences Center. The cancer cells under scrutiny are the same ones growing inside him -- in his nose, behind his eyes, pressed against his brain.

Mr. Martin, 31 years old, doesn't expect to find a cure for his cancer, sinonasal undifferentiated carcinoma, or SNUC. The disease is almost always fatal. Only 100 cases are documented in the medical literature.

When he was diagnosed, Mr. Martin took up surfing, considered dropping out of school and checked out the price of an air ticket around the world. But then he decided that before he died, he wanted to understand SNUC better. So, for the past six months, while his doctors have been trying to kill the cells that are destroying his body, he has been trying to grow the same cells in the laboratory.

"If I don't study it," he says, "there is no one else that is going to do it." [...]

He went to see Tyler Curiel, chief of hematology and medical oncology at Tulane, about working in his lab to earn credits. "I want to study my cancer," Mr. Martin recalls telling him. Dr. Curiel tried to discourage him. "We don't study SNUC," he said.

A week later, Mr. Martin was back. Dr. Curiel's lab had succeeded in using tissue donated by patients with ovarian cancer to grow tumors in the lab. Why not grow SNUC cells the same way?

Dr. Curiel, 47, was skeptical. Growing tumors in a lab is painstaking and tricky, he says, and Mr. Martin had little experience. It had taken two years of intense labor to recruit more than 100 ovarian-cancer patients to donate tissue for that project. The lab also was about to start trying to grow breast- and prostate-cancer cells, both notoriously difficult processes, and didn't have a lot of additional resources.

Besides, growing test tumors is as much alchemy as science, Dr. Curiel argued. With a disease as rare as SNUC, the chance of being able to figure out how to do it was small, at best. He worried Mr. Martin wouldn't be able to handle the emotional toll while undergoing treatment. And even if Dr. Curiel agreed to try, he asked where they would find the tissue needed to get started.

Mr. Martin offered to be the tissue donor. "I drew the line there," says Dr. Curiel. He worried that the surgery could cause brain damage or blindness.

Instead of surgery, Mr. Martin persuaded two surgeons at Tulane to devise a way to get tissue from his tumor by inserting a needle into his sinuses. It was less invasive and could be done in the office; Mr. Martin even volunteered to bring the tissue to the lab. Dr. Curiel says he finally relented because Mr. Martin had no other options. "If I can't cure his cancer," he says, "why not let him take charge of it?"

Mr. Martin started searching for information about SNUC. At the time, it wasn't even listed on the Web site of the National Organization for Rare Disorders. He found and read about 80 medical papers on SNUC and related diseases. He scoured bibliographies, then called researchers. He tried some of the same ingredients scientists had used to nourish cells for other types of cancers. No one he talked to had ever grown a SNUC tumor. [...]

In February, Mr. Martin went to the University of Chicago Hospitals, where he received weeks of radiation treatments. There is a possibility the radiation will leave him blind. He bought a digital camera and has spent many afternoons photographing the New Orleans skyline. He worked on a piece of sculpture. He wonders how he will study tumor cells if he can't see. But doctors tell him they have treated so few cases like his that giving any odds about his chances or the side effects of treatment would be meaningless.

While he was in Chicago, Mr. Martin got good news. Dr. Curiel walked into the lab, looked into one dish -- and saw that Mr. Martin had succeeded in getting the tumor to grow. "It was one of the greatest moments of my scientific career," says Dr. Curiel. "I just sat right down on the lab floor next to the microscope, speechless."

Some of the tumor cells grown in the lab were frozen. In coming months, researchers plan to inject the cells into mice, another step in the long process to learn more about the disease. They plan to test different drugs on the mice to see if they can kill or slow down the tumor. They are going to seek a government grant of $1.5 million to launch a five-year study of SNUC and how it might offer insights into other late-stage cancers.

During a week off between rounds of radiation, Mr. Martin flew back to New Orleans, anxious to continue working. The mouth sores from the radiation were so painful that he couldn't talk. He spent the week working in near silence, writing on yellow legal pads to communicate.

How does he feel when watching the tumor growing in the lab? "I have a certain revulsion for it when I see it," he writes in an e-mail. But at least in the laboratory, he says, "I have it helpless, for a change, and not the other way around."

...people like Andy Martin remind you of what we're capable of as a species.

Posted by Orrin Judd at April 2, 2004 4:01 PM