I read this in the Wall Street Journal today and thought it might be relelvant to you all. I can't imagine what it would be like to be in this guy's situation, but I think his efforts are admirable and inspirational.
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Medical Student Takes On
A Rare Disease -- His Own
Andy Martin Donates Tissue,
Then Struggles to Grow
Tumor Cells in a Lab Dish
By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL
April 1, 2004; Page A1
NEW ORLEANS -- 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."
According to the National Cancer Institute, the most common form of cancer in the U.S. is breast cancer, with 2.2 million people living with the disease in 2000, the latest year for which figures are available. Some 1.6 million have prostate cancer, and another million people have colon and rectum cancer.
While more than $1 billion is spent on cancer research every year, there isn't a lot of money available to do very narrow, specialized research. There was little being done for SNUC. Mr. Martin and other researchers hope that knowledge gained from studying rare cancers such as SNUC may help gain insight into how other cancers grow.
Mr. Martin's quest involved persuading a top scientist to let him work in his lab. He donated tissue from his own tumor to start the study. He spent months trying to concoct the right mixture of chemicals in which the cells would take root. Faced with setbacks in trying to grow the tumor cells, he came up with a plan to collect samples from other people newly diagnosed with SNUC.
Growing a tumor in a lab is extremely difficult. But it is the first step to being able to study a disease. If a tumor can be grown, researchers can do all sorts of experiments on it, tests that would be too risky to try on humans. The pursuit for a cure could continue even if Mr. Martin dies.
In the fall of 2000, a week before he was supposed to fly from his home outside Los Angeles to start medical school, Mr. Martin went camping in the mountains with his girlfriend. His nose started gushing blood. He was unable to stanch the flow and went to an emergency room. Eventually, surgeons turned up a large tumor in his sinuses.
None of the doctors he consulted knew exactly how to characterize the tumor. It was rare, they agreed, but they felt his prognosis was good. Mr. Martin delayed his studies and spent a year in treatment, undergoing surgery, chemotherapy and radiation. At the end, doctors said there was no evidence of cancer. When he started school in 2001, he assumed he had beaten the disease.
In his second year of medical school, he woke one night, his blankets covered in blood. When he went back for tests, doctors said the cancer had returned. This time, they were able to give it a name: SNUC, a very rare, very aggressive tumor that kills most patients within five years.
At first, "I spent a lot of time asking why, and coming up empty handed," Mr. Martin wrote about the weeks following his diagnosis, on a fund-raising Web site. "Even if there is a why, it is so obscured from my view that it is not relevant."
As a high-school student, Mr. Martin won chemistry prizes, then went to Harvard University intending to be a doctor. But he hated the long hours required in the lab and started skipping organic chemistry to go mountain climbing. His grades plummeted and his parents urged him to take time off. Working as a volunteer in an emergency room, he got excited about becoming a doctor again. He went back to Harvard, got good grades, and was accepted at Tulane's medical school. Now, on the verge of reaching his goal, it was about to be taken away.
In September 2003, Mr. Martin was supposed to begin making clinical rounds as part of his studies. But he didn't have the emotional energy to deal with the problems of patients while undergoing his own treatment. Still, he didn't want to quit medical school, either. He resolved to make himself his first -- and perhaps only -- patient.
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 November, there was a huge breakthrough: Mr. Martin managed to get some cells growing. He came in every day, counting as the cells under the microscope increased. Then, suddenly, they died.
"It was devastating," he says. For a while, he stopped going to the lab. Seeing dead cells floating to the top of their plastic dishes was too much to bear.
He wondered if he was wasting the little time he had left. He took refuge in writing in his journal and searching out other SNUC patients online. "There are times when I had to stop myself from throwing the rest of the wells out the window," he says, referring to the tiny concave containers where the tumor cells were growing.
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