Extensive article on a father seeking cancer cure for his son on the “edge of medicine”

The past weekend edition of the Wall Street Journal had a long front page article about a family working with many physicians to extendthe life of their son. It’s really a great article, which unfortunately is not available unless you are a Wall Street Journal subscriber.

I am putting the link in, because sometimes these links do work, even if you are not a subscriber, and there’s also a good chance the Journal policy will change in the near future, and their website will be open to non-subscribers.

I have also archived a copy of the article; email me if you’d like me to email it to you. There is a fairly long excerpt below the link.

Lab Rat? – WSJ.com

Neil Hutchison, 45, isn’t a doctor. A defense-contractor recruiter, he’s part of a growing underground pushing the edge of medicine to find combinations of anticancer agents to save themselves or loved ones. Many of the medicines Sam takes haven’t been tested in clinical trials for his disease. Some are meant for other illnesses; others are still in animal testing for safety and efficacy. But the fact is that Sam, who suffers a rare and often-deadly cancer of the nerves, is otherwise almost certain to die. Hence Mr. Hutchinson’s decision, as he puts it, to play "lab rat" with his son.

"When your kids have run out of options, you have to think outside the box," Mr. Hutchison says. "It’s terrifying, but it’s our only hope."

Mr. Hutchison’s methods are highly unorthodox. Doctors warn that untested combinations of drugs could cause terrible adverse reactions. Science takes time, and some doctors say that trying to shortcut the process is reckless.

But Mr. Hutchison is pursuing what many researchers believe is the most promising approach for curing or curbing cancer, which killed about 565,000 people in the U.S. last year. Because cancer seems to eventually overcome most individual therapies, researchers for a decade have advocated using combinations of new, targeted therapies on the theory that the best hope lies in cutting off all known avenues for the cancer to grow.

Trials of such methods have been slow to gain traction. "Everyone knows the future of cancer treatment lies in cancer cocktails," says David Kessler, dean of the school of medicine at the University of California, San Francisco. Dr. Kessler says the Food and Drug Administration needs to undertake an effort similar to one it did when he was commissioner in the 1990s, when it amended the drug-approval process to speed approval of AIDS-drug combinations. "What’s missing today is leadership."

Richard Pazdur, director of the Office of Oncology Drug Products at the FDA, says he strongly believes in the cancer-cocktail approach, but says it’s up to the "medical oncology field" to organize and implement such trials. He says drug companies struggle over how to collaborate on trials of therapies owned by several different firms. Others note the convention for testing drugs has been to prove efficacy individually in clinical trials — and only later to evaluate combinations of drugs.

A growing number of people won’t wait any longer. Thanks to the Internet, the sick and their families can read about scientific discoveries as they are published, track down scientists and doctors and share information and personal experiences. The handful of doctors and cancer survivors willing openly to advocate the do-it-yourself cocktail approach say they’re now approached by a half-dozen to a dozen interested patients every week.

In charting their own course, patients and families often run afoul of their own doctors. Some physicians chafe at having patients grab control of treatment. Some worry that medicines not yet fully tested may harm patients and prompt malpractice lawsuits. "The patient could suffer terribly and die as a consequence. Who is ultimately responsible for that?," asks Marc Chamberlain, director of the neuro-oncology program at the Seattle Cancer Care Alliance, which includes the Fred Hutchinson Cancer Research Center.

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"Playing lab rat with your kid isn’t easy," Mr. Hutchison said, tears welling up in his eyes. "This brings me to my knees."