LaurieB

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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.

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.

First Patient

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.
continued on next post...
 

LaurieB

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continued...

Dr. Curiel shared the frustration. "The cells wouldn't grow in the lab," he says "but they never stopped growing in Andy."

He asked Brian Barnett, an experienced researcher whose mother died of brain cancer when he was 14, to provide emotional and technical support to Mr. Martin. When they excitedly showed Dr. Curiel cells that they thought might be the tumor growing, he showed little emotion. "It could be nothing," he told them. "I've been down this road before."

The experiment, which had cost about $20,000, was being paid out of the lab's discretionary funds. But Dr. Curiel knew they were going to need more money. His 11-year-old son suggested an unusual fund-raiser: that Dr. Curiel, an avid long-distance runner, try to break the world record for dribbling a basketball the longest distance over 24 hours.

Dr. Curiel, who has won ultra-marathon races of 125 miles, started dribbling a basketball everywhere he went -- during his morning run, while taking his kids to school, or when walking his dog. On Dec. 15, he started out, running around the university's track. Mr. Martin's classmates took turns running next to Dr. Curiel through the night, occasionally passing him slices of pizza and bottles of water. A visiting marching band, practicing on the field, played "You'll Never Walk Alone." The doctor developed tendonitis in his right elbow and had to dribble the last three hours of the 108-mile run left-handed.

The "Bounce for Life" stunt generated more than $28,000 in donations for Mr. Martin's research. Mr. Martin was there when Dr. Curiel broke the record, giving him a hug in the middle of the track.

Being the only donor of tissue made Mr. Martin's attempt to grow a tumor even more difficult. He conceived of a project to have institutions collect and share tissue from any new SNUC patients. Tulane is studying the idea, in conjunction with Louisiana State University. Eventually, they hope to expand it across the country.

Sharing data among institutions "is the only kind of model available to study rare cancers," says Paul Friedlander, a surgeon and oncologist at LSU, who says it can be applied to other rare malignancies, not just SNUC.

To Dr. Curiel, the most important insight gained from this experience is that there may be things all cancers -- even the rarest ones -- share. Scott Saxman, a senior investigator at the National Cancer Institute, says the study of what goes wrong in rare cases could yield discoveries that may apply to more-common forms of cancer.

Dr. Curiel hopes to get funding to allow other cancer patients to study their own tumors in his lab. "It's therapeutic for patients, especially those with hard-to-treat cancers," he says. Ian Taylor, dean of Tulane's medical school, says he supports the idea, but "what we wouldn't want to do is offer false hope to people."

On a recent day in the lab, Mr. Martin wore a wool cap over his short, bristly hair. His brown hair had hung in curls all the way down the middle of his back until it started falling out from chemotherapy treatments. A jagged scar, a remnant of one of the surgeries he underwent to try to remove the tumor, stretches from one end of his scalp to the other.


Silent and Sterile

The lab is silent and sterile, not the kind of place where Mr. Martin expected to spend his medical career. Still, in some ways this task, requiring discipline and persistence, fits his personality. When he was rock climbing, he says, he spent entire afternoons inching his way across the side of the mountain, searching for ways to the top.

On a Friday, there were 15 small plastic dishes, each containing millions of cells culled from thin slices of his tumor. The following Monday, only seven of the dishes were still viable. The rest had been contaminated, probably because the tissue from his tumor comes from the nose, a location filled with bacteria. There were still 30 vials of Mr. Martin's tumor cells in the lab's freezer, but every time a sample got infected, he worried they would run out of tissue before they succeeded in replicating the tumor.

Cells in one of the dishes seemed to be thriving. Mr. Martin called Dr. Curiel in to take a look. "This is what we're thrilled about," he told Dr. Curiel, using a marker to make an X on the cover of one clear plastic dish. "These heinous-looking cells."

Dr. Curiel shifted the microscope lens back and forth. He asked what medium the cells were growing in. It was a complex mixture, involving over 15 different ingredients, an idea Mr. Martin got from his vast reading on SNUC. Dr. Curiel's enthusiasm was tempered. He wasn't yet willing to declare that Mr. Martin had succeeded.

Mr. Martin looked flushed, a reddish hue visible underneath his pale skin. He said he felt like he had a fever and needed to lie down but had stayed in the lab to show the latest results to Dr. Curiel.

Dr. Curiel told him to keep going. "They look like tumors," he told Mr. Martin, whose face remained a tight mask while waiting for the verdict. "But I'm worried they're going to die."

What remains unspoken in the lab is the fear that Mr. Martin is going to die too. Over the past months of work, the two men have grown close. Dr. Curiel, who collects bottles of wine, has invited Mr. Martin over for drinks and shared some rare vintages of port. Sometimes, Dr. Curiel says, he wonders what Mr. Martin feels when he looks down the microscope and watches the cells growing, knowing that they are proliferating inside his body too. So far, he has refrained from asking that question.

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."

Write to Amy Dockser Marcus at [email protected]
 

Disenchanted 1

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gosh...that is really tragic. He worked all his way to get to medical school and now he has to face his inevitable death. I can't imagine. It is extremely hard. My heart goes out to him and his family.
 
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Even though the story is tragic, I prefer to see it as a triumph of the human spirit. Instead of running away from the problem, Andy is doing all that he can to learn more about it, and contribute to knowledge that might help others with his plight in the future. He should be an inspiration to us all.

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Kenati

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When I was a public health student at Tulane, I worked directly under Dr. Curiel doing market research for his lab; which later resulted in a letter of recommendation and my acceptance to Tulane. Dr. Curiel is an INTENSELY busy man, spending most of his time devoted to writing grants, striving to pull in money in order to support the better known and well-funded research undertakings. It is difficult to describe him in words, but I can truly say with conviction that he is a doctor?s doctor.

On the surface, it may seem silly to break the world record for bouncing a basketball for 24 hours in order to gain notoriety and support for a rare esoteric cancer with no known cure, but in reality his magnanimous efforts have set precedence for the study of tumor cell lines that would otherwise go unnoticed. How inspirational this story must be for those people who live with a rare form of cancer that little is know about. Perhaps their day will soon come as well.

In the November-December Tulane newsletter, Andy Martin writes, ?As a student of medicine, nothing has ever made me feel so merely human as the collective uncertainty of the very best of our nation?s cancer doctors.?

I am just starting out, but I can only imagine how many times we will feel ?merely human? as we experience the often helpless void of clinical uncertainty.

Our hearts and prayers go out to Andy.
 

carrigallen

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I don't understand why the cancer cannot at least be *treated* by surgery or radiotherapy like IMRT. :confused:
 

exmike

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what a great story. I wish him the best.
 

tofurious

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I definitely admire the effort of Andy Martin and I think more time and $$$ should be devoted to the study of rare diseases that drug companies wouldn't fund due to a lack of strong market demand. However, this story raises many ethical questions that people involved must answer. What if his tumor is in some way (genetically) different from the majority of other people's tumors who are much more similar to each other? Would he abandon looking into his own tumor to study the mutation/disease that would benefit a greater number of people if a cure were found? Would his PI redirect the team effort? Would he spend more time culturing his own tumor cells or an equal amount of time to develop cell lines from others as well? What if he discovered an experimental therapy in lab that could damage tumor cells from him? Or a therapy that potentially could treat others' tumors but not his?

A similar story surfaced earlier this year or late last year, when it was discovered that Craig Venter decoded his OWN genome. While IRBs generally get a bad name for being super cautious, ethical issues like this deserve much more IRB attention beyond the human factors.
 

Jaded Soul

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Originally posted by tofurious
A similar story surfaced earlier this year or late last year, when it was discovered that Craig Venter decoded his OWN genome. While IRBs generally get a bad name for being super cautious, ethical issues like this deserve much more IRB attention beyond the human factors.
This has nothing to do with the thread, but I thought it's been known for a long time that Venter was the DNA donor? I remember one of my biology profs in college about 5 years ago saying something about how Celera was decoding Venter's genome.
 

tofurious

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I don't think it was officially known. It was known that there were 10 donors of DNA and Venter was one of the 10, but the news that the first one decoded was his wasn't revealed until recently. (I could be wrong though)
 
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