Cheating Death

by Sanjay Gupta

  This entire book is about why some people recover and thrive, even when traditional medical science and even common sense would write them off. Most doctors will tell you they don’t believe in miracles. What they believe in is working hard, doing their homework, and never giving up. This is how you cheat death.

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  DR. DAVID GORSKI has a pet peeve with the term “medical miracle.” Gorski is a surgeon and cancer researcher at Wayne State University, who also writes two blogs, Respectful Insolence and Science-Based Medicine. On Respectful Insolence, under the pseudonym Orac, Gorski kicked off 2008 with a New Year’s resolution: “Let’s not use the word miracle when we really mean ‘unexpected survival.’ ” He says that many miracles would better be credited to first-rate medical care while others are simply the result of random chance. Calling them miracles can lead patients to miss the real story—and to pursue treatments that are ineffective or even dangerous.

  Take Alcides Moreno, a New York window washer who survived a forty-seven-story fall in December 2007. 7 Sure, says Gorski, that takes a lot of luck, but it was the talent of medical professionals who saved him. “What saved the guy was the concerted effort of a lot of people. That, and all the understanding we have of human physiology,” says Gorski. 8

  Gorski is a crusader for evidence-based medicine—the idea that therapies should only be used if there is solid evidence to support them. In the world of cancer, that means stomping on a lot of feel-good stories. One of his mini-obsessions was the case of Starchild Abraham Cherrix (yes, his real name), a teenager in Virginia who seemingly recovered from Hodgkin’s lymphoma after a bitter legal battle over his right to refuse conventional treatment. 9 Rather than accept his doctors’ recommendation of chemotherapy, Cherrix and his family traveled to a clinic in Tijuana that offers the Hoxsey method, a sundry mixture of antimony, zinc, bloodroot, arsenic (in a miniscule dose), licorice, red clover, burdock root, Stillingia root, barberry, cascara, prickly ash bark, buckthorn bark, potassium iodide, procaine hydrochloride and vitamins, liver and cactus—as well as sulfur and talc—which is applied to the skin. 10 A court stepped in to block a return trip and forced a compromise whereby Cherrix agreed to see a local oncologist, who gave him a combination of standard radiation treatment and herbal and alternative therapies. By the fall of 2008, according to news reports, Cherrix was cancer free.

  Along the way in 2007, the state of Virginia passed new legislation, Abraham’s Law, giving families of children age fourteen to seventeen, facing “life-threatening disease,” the right to pick—or ignore—any treatment they choose. 11 In the headlines, it was a triumph for alternative medicine. For Gorski, that’s ridiculous. “There’s good evidence the Hoxsey method doesn’t work,” he says. “It’s almost certainly the radiation that shrank Abraham’s tumors.”

  That’s evidence-based medicine. Gorski rejects the concept of “healing” sites like Lourdes—where pilgrims have gone for centuries in search of divine cures—and he rejects the notion that prayer can heal, saying, “It obviously doesn’t work.” That pretty much sums up the point of view that most scientists take—in public. But I know it leaves a lot of them, myself included, with nagging questions. Even with chemotherapy, the speed of Matthew Pfenninger’s recovery is remarkable, even astounding. Most patients would take months to show any sign of shrinking tumors, let alone making them disappear altogether. There are plenty of cases, popping up all the time, where the recovery does seem truly miraculous—at least, in the sense that a medical reporter might use it, even if a neurosurgeon wouldn’t.

  Sometimes it really looks like someone beat the odds, that the lottery ticket paid off. Maybe it’s a miracle. Maybe prayers were answered literally, but maybe it’s something else, and in these cases, it is worth digging deeper, as doctors and reporters. For one thing, you have to consider the possibility of misdiagnosis. In cases that aren’t so well documented as Charles Burrows’ or even Matt Pfenninger’s, it’s entirely possible that the person never had cancer after all. An interesting phenomenon I have seen occur in hospitals is a type of groupthink. Once a patient is labeled with a particular diagnosis or prognosis, most of the other health-care team members tend to sign on without scrutiny. That can make a second opinion valuable, if only to lay fresh, uninfluenced eyes on the problem.

  But it gets more complicated than that. The practice of medicine is always changing. There are new discoveries, and new approaches that may benefit—or harm—particular patients. On top of that, every patient is an individual unlike anyone else, in ways both known and unknown. For all the value we place on clinical trials and careful research, doctors often make judgments based on personal experience—or the experience of other doctors they know or read about. These are anecdotes, as in “anecdotal evidence.” They’re almost dirty words to some people—you can almost hear the sneer when they say, “There’s only anecdotal evidence for… ,” but after all, each patient is an anecdote. And the reasons why some people get better while others don’t are not always obvious.

  Another very real possibility is that the person is just plain lucky. No one truly expects to win the lottery, but most times someone really does have the winning ticket. Here’s the thing: you need to consider the statistics, the chances, the odds. When we play Powerball, we know the true odds. On a single ticket, it’s 195,249,054 to one, if you were wondering. 12 But medicine is different. No doctor can be anywhere near that precise. We come up with estimates based on the specifics of each case, on the published research, and our own experience, but in the end it’s only a guess. Perhaps a well-qualified and substantiated guess, but still a guess. The doctors who told Mark Ragucci’s family to take him off life support were highly educated, well-meaning physicians with lots of experience. And they were wrong.

  ON A SUMMER afternoon in 1996, a thirty-year-old man named David Bailey was hunched over the phone, his grip on the handle getting tighter with each call. 13 He was going down a list, a list he had made of people who might be able to save his life. Bailey, a highly successful salesman of computer software, was surrounded by half-packed cardboard boxes. Two weeks earlier, on July 4, he and his wife were planning to spend the holiday getting ready for a move from northern Virginia to the Boston suburbs, where he’d landed a new job. He’d driven home from Massachusetts the day before, and eleven hours in the car had left him with a splitting headache.

  The morning was even worse. Packing would have to wait. Not long after breakfast, Bailey was nauseated and dizzy. He tripped and fell in the living room. “My wife called 911, and I got on the ambulance, but I thought people were just unnecessarily worried,” he told me. “That’s the last thing I remember.”

  In the ambulance, Bailey had a small seizure, and at the hospital, he had a major epileptic seizure. An MRI of his brain detected a large mass, and he was rushed into surgery that same day. He awoke four days later feeling better, until he got the news. “They told me I had six months to live,” he said. “The tumor was a glioblastoma. They said, ‘Good luck.’ ”

  Of all the words you might hear in a hospital, “glioblastoma,” or “GBM,” may be the most chilling. Of 126 known types of brain cancer, glioblastoma is the most common, but it’s also the most deadly. 14 As with any brain tumor, it is relatively rare, striking about ten thousand people a year. 15 Also called a malignant glioma, this kind of tumor tends to grow tendrils, arms growing out from the original tumor site. When I open the brain to perform surgery, I can tell you these tumors look like a little version of the monster in Alien, gripping its victim with these evil-looking tentacles. A malignant glioma grows fast—“highly aggressive” in medical terms. Untreated, it will double in size in just days. Just as dangerous, a malignant glioma is “diffuse.” This means that it’s made up of many different kinds of cells, which respond variously to different treatments. This is important because no single treatment can kill every kind of cell in a malignant glioma. When I talk to my colleagues in the pathology department, they remind me we don�
�t even know how many kinds of cells there are.

  Where the illness comes from is not well understood. In the vast majority of cases, the cause is a mystery, and without a known cause, doctors can’t even tell you how you might prevent it. But all the research on malignant gliomas reveals an incredibly complex and resilient enemy. For one thing, cells within the tumor constantly and quickly mutate. A biopsy taken during surgery often looks dramatically different from a biopsy taken when the tumor recurs just a few months later. It’s like a completely different disease. This variety of cells is referred to as heterogeneity. Heterogeneity is why doctors often prescribe multiple treatments for cancer patients; what kills one kind of cell may leave others to continue growing. Worse, an ineffective treatment leaves tumor cells that are resistant, and as they multiply, all the resulting cells will be resistant, too. A single treatment—a single chemo drug alone, for example—virtually never works.

  A glioblastoma is also a physically moving target. According to Dr. Darrell Bigner, the director of the Preston Robert Tisch Brain Tumor Center at Duke Medical Center in Durham, North Carolina, its cells almost always develop the same ability to migrate through the brain, as do cells in a child’s developing brain. By the time the cancer is discovered, the cells have usually crossed to the other side of the brain and sometimes down into the brain stem. For this reason, surgery is never enough to fully eliminate this type of cancer.

  That’s not to say surgery isn’t vital to survival; in the short term, the patient needs surgery to cut away the tumor that’s pressing on his or her brain. As a neurosurgeon, I’ve learned several techniques that make surgery an even more powerful anticancer tool than it was ten or twenty years ago. Before any operation, we create a 3-D model of the brain and the tumor, to identify precisely where the tumor is located and how that relates to the parts of the patient’s brain that are critical to functions like speech and movement.

  In recent years, some surgeons have learned a more dramatic way to map these vital areas. Many now perform brain surgery on patients who are not knocked out by anesthesia (this is possible because the brain itself is not sensitive to pain). Senator Ted Kennedy—who underwent surgery at Duke—was one such patient. In so-called “awake surgery,” the medical team can stay in constant communication with the patient, asking him to recite a sentence or to grip a ball, in order to make sure they’re not cutting into a part of the brain that would cause major damage. What this means is that surgeons can be much more aggressive; they can cut out more of the tumor, without having to leave a large margin of error to protect sensitive brain regions. But it’s still not a cure. We’re pretty much at a limit with what we can do surgically, because we can only take out what we can see. And at this level, the real problem is the tumor cells that we can’t see.

  Put it all together, and the diagnosis has been historically a death sentence. Without treatment, the average survival time is just a few months. With standard treatment—surgery to cut out the tumor, followed by radiation and chemotherapy—most patients still die in less than a year. Just 3 percent make it five years—and these are patients who are relatively young for cancer, often in their thirties, forties and fifties. 16

  A WEEK AFTER SURGERY, David Bailey went to meet with his doctor, expecting to strategize about how to save his life. “They took out the staples and stitches. And then I said, ‘So what’s the plan?’ He suggested a guy I might want to call,” says Bailey. “I said, ‘Well, do you have a number?’ And then, ‘Can I use your phone?’ I’d done some research, and I knew this thing doubled in size every ten days. Here, it had already been twelve days.” Bailey could tell his doctors weren’t feeling the urgency, so he had to ask, “Is this always lethal?”

  “It’s pretty hard to beat” was the limp reply.

  GBM is such a grim diagnosis that many doctors won’t even try to beat it. They’ll push patients straight toward end-of-life care, treatments meant to ease suffering rather than fight the disease. But David Bailey wasn’t ready for that. To find hope in a hopeless situation, Matt Pfenninger turned to prayer; Bailey turned to the Internet. He got home and started surfing the web. With an old dial-up modem, it took a while, but he found a website, www.virtualtrials.com, that listed all the experiments, all the trials of potential new ways to beat this hopeless condition. He felt a little better, but only until he started calling, with that white-knuckled grip on the phone.

  “I called the first number, and said, ‘Hello, I’m Dave Bailey. I have a brain tumor. Can you help?’ ” remembers Bailey.

  “What do you have?”

  “Glioblastoma.”

  “Ohhhhhh.”

  Says Bailey, “You could hear it in her voice.” And in the voice of the next person he called, and the next. “I’d get that same depressed tone of voice, basically saying, ‘There’s not much I can do.’ I’d just hang up. This was not what I was looking for.”

  And that’s how it went, all the long, long day: one dead end after the other. But then on the twenty-fourth call, he heard something different. “This girl answered the phone, and I gave a little speech. She said, ‘Oh, yeah? Tell me all about it.’ Just this little change in tone. I said, ‘Yeah, I’ll tell you everything.’ She was empathetic, caring, and at the end she said, ‘I’ll give the doctor all the details, and he’ll call you tonight.’ ”

  Somehow, her good-bye was a letdown; after dozens of dead ends, Bailey figured he was being blown off, again. But at ten thirty that night, the phone rang. “There was this voice, saying, ‘Hi, I’m Dr. Friedman at Duke. I hear you’ve got a brain tumor. What are we going to do about it?’ And I said, ‘I don’t know, but you’re hired.’ ”

  The voice on the line was Dr. Henry Friedman, the deputy director of the Preston Robert Tisch Brain Tumor Center. When I sat down and spoke with Henry Friedman, he was dressed in a Duke sweatshirt and a pair of jeans. He wasn’t exactly what I expected. With almost an irreverent sense of humor, he quickly charmed everyone in the room. What struck me the most was how often his cell phone rang. I came to learn that he gives his number to all of his patients and strongly encourages them to call. It’s all part of the healing that he offers.

  Friedman says that what happened to Bailey is typical. “Almost every patient I see, a physician has said they’re dead before they even get to us. Virtually everyone,” says Friedman. Too many doctors, he says, think there’s nothing to be done for patients like Bailey. That means Friedman’s first battle is against perception. “You don’t have to die of GBM. It’s not a given, and because it’s not a given, we can offer interventions that are more optimistic. Hope is the real card you play. It’s very critical in any battle, against any illness.” That was the message David Bailey had been waiting to hear. The next morning, he and his wife packed his brain scans into an envelope, packed up the car, and drove the four hours to Durham.

  This was 1996, and after a new round of brain scans and meetings, Bailey was put on a drug called temozolomide, which today is sold under the brand name Temodar. Bailey was just the twelfth person ever to get it. Friedman was as optimistic as he could be under the circumstances. Bailey was an energetic young man, and his initial operation had cut the tumor down to the size of a lentil. And for three months, the news was good. With temozolomide, along with standard chemotherapy and radiation, Bailey’s brain scans were clear.

  After radiation and drug therapy, standard treatment would have been to leave well enough alone. But Bailey and Friedman weren’t done. During the second surgery, surgeon Allan Friedman (no relation to Henry) had inserted a port, or shunt, a tube physically implanted in Bailey’s brain through which another experimental treatment could be administered.

  The approach is called monoclonal antibody therapy. Proteins from a malignant glioma are loaded onto human immune cells, which learn to react to those proteins. These cells are cloned in the lab and bonded to radioactive iodine. Administered through the shunt, the treatment is supposed to work like a smart bomb. Guided by the immune c
ells, the radiation goes on a search and destroy mission straight to the cancer cells, leaving the surrounding brain tissue unhurt.

  For Bailey, the experience was a bit unsettling. Every day, an official from the Nuclear Regulatory Commission would come to Bailey’s hospital room with a Geiger counter to make sure the radiation from the antibodies wasn’t seeping into the rest of the hospital. But Bailey responded well—very well. In the vast majority of GBM cases, the cancer comes back within a few months, and the patients die a few months later. But by the time my team met David Bailey, he had gone more than a dozen years without a trace of malignant growth. That’s a spectacular result. So good, you might call it a miracle.

  But it pays to dig deeper. Scientifically speaking, Bailey is an outlier. Diagnosed with an invariably deadly brain cancer, he beat incredible odds. How? As I have said, most doctors don’t believe in divine intervention; they believe that if a patient gets better, there must be a good reason. Now, we might have a tendency to give ourselves too much credit—to say that whatever the physician did is the thing that cured the patient. But there is a plus side as well. It means we are always looking for an underlying reason—a lesson to learn that might help others. It is fair to say that just because we find a scientific explanation for something doesn’t make it less wonderful—less miraculous, if you will. The fact that we can detect religious feeling on brain scans doesn’t make those feelings of awe any less powerful.

  In any case, a survival story like Bailey’s is a great big puzzle. It’s a mystery where the clues are so tiny that they can only be seen at the end of a powerful microscope, in chemical bonds, and the makeup of our human DNA. It’s instructive to look at the clues one by one. Think of it as the scientific dissection of a miracle. Like others in these pages who have cheated death, Bailey had a few things going for him. For one thing, he was young, and younger glioblastoma patients are known to do better. 17 Before his cancer, he was generally healthy, and he was given a multitude of treatments, some conventional and some experimental. He also got surgery, traditional chemotherapy, standard radiation, a new experimental drug, and then the experimental monoclonal antibodies. Which treatment, or treatments, was critical to his survival?