Now, the CDX-110 vaccine is being tested in a larger study, at twenty cancer centers around the country. As high as hopes
have risen, we need to remind ourselves that the therapy is largely unproven. But CDX-110 is part of a larger trend toward
personalized treatments for cancer. Because it targets the mutant EGFRvIII protein, it only works against cancers that express
the protein—about 40 percent of all glioblastomas, according to Sampson. At Duke, genetic screening is now the norm. At Duke
and other centers taking part in the current trial, tissue from every malignant glioma is tested to see if it contains EGFRvIII.
If it does, these patients get an EGFR inhibitor as part of their treatment. This is complicated stuff and full of uncertainty,
but this is how miracles are made and how their mysteries are unraveled as well.
As the patient, you want to try everything; you don’t want to leave any stone unturned. As the doctor, you know you have to
weigh potential benefits against the risks, since side effects can literally be deadly. But most researchers—though of course
many are doctors, too—have a different mind-set, and this brings up another problem. They’re trying to zero in on the right
treatment—to solve the puzzle—and if you throw the kitchen sink at a patient, you can’t isolate what works and what doesn’t.
To be clear, most major cancer centers do offer multiple treatments for patients. But the holy grail of cancer treatment is
a way to predict which approach will help which patient. Here, genetic screening may help. Of more than twenty thousand genes
that lay the foundation of our bodies, researchers have already identified about twenty that seem to be related to the incidence
of brain tumors. With that information, they’ve identified a few specific genes that seem to signal whether a particular treatment
will work in the first place before the treatment is ever given. Temodar, for example, only seems to help about 30 percent
of glioblastoma patients, those who carry one particular gene.
24
Even as a surgeon, I can tell you that the future of treatment will lie outside the operating room. Remember, this is still
a disease with no cure. I think the future for David Bailey and countless others around the world does involve personalized
medicine, keeping in mind that glioblastoma is different in various groups of patients. It is true that all these tumors look
the same when you’re staring down at them in the operating room, but when you look under a microscope and break them down
on a molecular or genetic level, it’s different. One day we’ll have more examples like Temodar—we’ll know that if you have
x
gene, you’ll respond to
y
treatment. I also suspect that, someday, genetic profiling will explain those extremely rare cases, like Chuck Burrows or
Alice Epstein, whose bodies are able to somehow reject cancer on their own. It will be further proof of something we have
known all along, that every patient is different—and that every tumor is different as well.
F
OR DAVID BAILEY
, a diagnosis of deadly cancer was a new beginning—not the end. About six months into his recovery, his hair still gone from
radiation therapy, Bailey was sitting in his Virginia living room, waiting to see if the monoclonal antibodies would keep
the cancer at bay. By then he’d gotten to wondering about what he should do with his life, whatever was left of it. The job
in Massachusetts was gone. Between the headaches, surging emotions and memory problems, selling software again seemed unthinkable.
As he sat on his couch, sunk in thought, Bailey’s wife placed a guitar in his hands. He had plucked away during high school
and college but hadn’t touched the instrument in years.
“I started crying,” he remembers. “I had lost some vision, and I didn’t even know if my fingers worked. But I started going,
started playing again that same day. It just unlocked a whole bunch of things.” He started practicing and writing songs. With
each passing week, he gained strength in his hands. With each MRI that came back clean, he gained confidence, and before long,
he was performing in local coffee shops. In two years, he had his first CD—of more than twenty.
25
Along the way, he’s played in forty-four states and Europe, in every sort of venue, but he says he finds the gigs for cancer
groups especially meaningful. “I step back and remember,” says Bailey. “For a lot of people in the audience, me just stepping
on stage and saying, ‘Twelve years [since his diagnosis]’ is the victory.”
He told me, “I remember in those first weeks [after the diagnosis], I went for this long walk, and on this walk I did what
I assume a lot of people do. I got pissed off at God, waved my fist at the sky, and I cursed, ‘Why me?! Why me?!’ And I tell
that story, and the audience always understands. These days, I imagine God saying, ‘Wrong question. Don’t ask ‘why?’ Ask,
‘What now?’ It’s a huge epiphany. But it adds a huge responsibility. You realize you’re not the total victim you maybe thought
you were.”
Here’s how he put it in a new song “Fragile.”
Lookin’ in from the outside
Don’t know what to say
Storms will come every day
But even hurricanes go away
You just learn what it takes to be strong
Don’t have to be fragile very long
To beat stupendous odds, to make a miraculous recovery, you need a few crucial ingredients. You need a patient with the inner
strength not to give up and the wherewithal to seek help. And you need a doctor who is willing to try almost
anything.
You need hope—the kind of hope that Henry Friedman offers. The kind of hope that guides him in making a million tiny decisions,
medical calls, and trial and error that add up to lifesaving treatment.
“The motto is so simple,” says Bailey. “ ‘At Duke there is Hope.’ But it’s amazing: so many people miss the boat about how
important that is. For us, there is no such thing as false hope. There’s hope, and there’s no hope. I weave this into my concerts,
telling people, you’ve got a choice: dig in your heels, wrap yourself around hope, or crawl into a corner and die. There’s
nothing in between.”
D
ARRELL BIGNER BROUGHT
up something I had wondered about when I first learned of David Bailey’s story. Until the 1990s, he told me, pretty much
every long-term glioblastoma survivor was probably a case of misdiagnosis: some other, less aggressive tumor. In Bailey’s
case, that’s not the issue. Multiple brain scans and biopsies at a top-notch cancer center left no doubt that he had a deadly
glioblastoma. At the time he was first diagnosed, there was no one, literally no one, who could say they’d survived the illness
for more than a decade. And yet in 2008, we found him alive and well, just like the title of his latest CD.
Bigner says there are more stories like this one to come. “We don’t want patients to think this is a hopeless situation. Unfortunately,
unless you are actively trying to cheat death, this is what we’re told by the vast majority of the medical profession. Our
patients hear it all the time: ‘You’ve got this malignant brain tumor; there’s nothing to be done but palliative care. Go
write your will, take a nice vacation and get ready to die.’ And that’s not really the case at all.”
When Henry Friedman criticizes other doctors for giving up on their patients, he uses the same words as Stephan Mayer and
Lance Becker: “therapeutic nihilism.” That’s the notion that nothing can be done. For some terminal patients, that’s true.
But even with an illness as deadly as glioblastoma, there’s hope if you’re willing to take a fresh look. “The status quo is
unacceptable,” says Friedman. “If we use the same interventions we’ve always used in the past, there’s no reason to think
the outcomes will be any different, but if we are hopeful and use interventions that are new… .” his voice trails off for
a moment. “Well, then the canvas is totally unpainted.”
It certainly echoes the stories we’ve heard about other patients left for dead. Back in 1996, when David Bailey was diagnosed
with brain cancer, a skier like Anna Bagenholm, who was trapped under freezing water for two hours, probably never would have
made it to a hospital. A cardiac arrest victim like Zeyad Barazanji—who had stopped breathing for five minutes—might have
been left to languish in a coma. Not to mention Mark Ragucci, whose doctors said was doomed to life as a vegetable, if he
lived at all. Like other doctors we’ve met in these pages—Stephan Mayer, Gordon Ewy, Mads Gilbert—Friedman isn’t waiting until
he has all the answers. He works with what he has, pushing his patients—and colleagues—to try something new. The more they
try, the more patients who decide to fight, the more David Baileys we’re likely to see.
M
ATT PFENNINGER’S STORY
is a little different. Pineal germinoma—Matt’s brain tumor—is not invariably fatal. Overall, the survival rate is around
60 percent, according to the American Cancer Society. Still, to beat cancer is almost always a long and winding path, and
that brings us back to the Pfenninger home in Midland.
You see, just six months after the deeply moving prayer service and Matthew’s miraculous recovery—well, that’s when the story
really begins. The tumors came back. In fact they recurred in two places on either side of his brain. The locations were so
delicate that surgery to remove either tumor was out of the question. “That was the beginning of the worst part,” Matt told
me.
At that point, the Pfenningers, like so many others before them, made their way to Durham, to the Preston Robert Tisch Brain
Tumor Center and Dr. Henry Friedman. Under the care of Friedman and a pediatric oncologist, Dr. Joanne Kurtzberg, Matt underwent
a series of bone marrow transplants. His condition improved enough for him to fulfill a lifelong dream by attending the University
of Michigan in Ann Arbor. But it wasn’t meant to be. A few weeks into his freshman year, he dropped out. Matt told me, “I
could barely eat anything. There was a hole starting to form in the roof of my mouth as a side effect of all the medications.
It was not fun. It’s supposed to be the best time of your life, and I couldn’t have been more miserable.”
What Matt went through the next two years is frankly too horrible to imagine for most people, but he recounted it for me with
astonishing detail. There was surgery to remove a tumor that had spread to his lung. An artery and a vein became fused, which
led to another surgery, taking out a third of the lung. Another day, sitting down to a meal of tacos at home with his father,
Matt felt liquid in the back of his throat. Standing over the sink, he coughed up two liters of blood. He made it to the hospital,
choking blood into a salad bowl while his father drove. He passed out in the waiting room. “I felt like I was going to die,”
he told me. “It was pretty peaceful. I was sad for the people I was leaving behind, but I wasn’t scared at all.” The nurses
desperately packed his nose full of cotton to stop the bleeding.
From there it was back to Duke, for another bone marrow transplant. On this go-round, Matt jokes that the only doctor he didn’t
see was the gynecologist. The family ran up $2 million in medical bills, as Matt got daily blood transfusions for three months.
He had a throat full of tumors, with constant blood clots that threatened to cut off his breathing. One day he passed out
from loss of blood and had an emergency tracheotomy. He ended up on a respirator. He couldn’t eat; five months into his hospital
stay, he had a tube in his gallbladder and a feeding tube in his stomach. The first time medical staff put in the feeding
tube, it wasn’t tightened properly and it leaked, so he ended up with a severe infection inside his abdomen. He could no longer
go to the restroom on his own.
Throughout the seven-month hospital stay, Matt’s mother, grandmother, and sisters took turns by his bedside, while his father
kept up the home in Midland. More than once, Jack Pfenninger got a call from Duke, telling him to get down there, that his
son might not make it through the night. At that point, says Matt, “I was just waiting to die. I was ready to go. The doctors
kept telling me it was going to be okay, but I was pretty convinced it was over.”
One especially painful day, Pfenninger leaned across his son’s bedrail and whispered the most difficult words he’d ever spoken:
“If you want to let go, just let go. I won’t hold you. I’m not going to make you suffer.” After hugging his son, Jack had
his hand on the door to leave, when Matt managed to speak, saying, “Dad, I love you. And I want to come home.” Jack took it
as a stubborn promise.
No one knows what makes for a turning point in a long illness like the one that almost killed Matt Pfenninger. But right around
the day of that promise, his condition took a turn for the better. Maybe that’s as much of a miracle as the time his tumors
went away after the round of group prayer. In any case, the next MRI showed the tumors in his brain were stable. The next
thing he knew, they were shrinking. Less than two months after his dad’s visit, Matt staggered off a plane in Midland, looking
up at a skywriter’s message: “Welcome Home, Matt.” It was Father’s Day 1997.
The scars are still there, figuratively and literally. To remove one of the tumors, doctors had to cut out part of Matt’s
vocal cords. His voice is raspy and so high it almost squeaks. But somehow, after three years doing battle with cancer, Matt
picked up at almost the same place he left off. He returned to college, graduating from Saginaw Valley State University, near
his home, with close to a 4.0 grade point average. Then he made it back to Ann Arbor, where he picked up a degree in electrical
engineering. Today he designs software for General Electric and marvels at what was almost his fate.
Whether or not you believe in divine intervention, even some hard-core scientists and cancer specialists see real value in
positive thinking, which Matthew almost always maintained. On the most basic level, research tells us that a positive attitude
goes along with a stronger immune system; one study even found that people who meditated or prayed were more resistant to
a flu virus that was blown into their noses. Beyond that, I believe strongly that the will to live is real. This may just
be that a person who decides to fight his disease is more aggressive in seeking care. Any doctor will tell you that the most
difficult, complaining patients are usually the ones who do best. Think of Mark Ragucci. Or it may be that someone healthy
enough to fight is just more physically resilient.