We’d hardly got home before I said: ‘Well, I suppose I’m going to write a cancer diary.’ The only other thing I might have said was: ‘Well, I’m not going to write a cancer diary.’ Right there: a choice? I’m a writer, have been since I was small, and have earned my living at it for thirty years. I write fiction and non-fiction, but it’s almost always personal. I start with me, and often enough end with me. I’ve never been apologetic about that, or had a sense that my writing is ‘confessional’. What else am I going to write about but how I know and don’t know the world? I may not make things up in fiction, or tell the truth in non-fiction, but documentary or invented, it’s always been me at the centre of the will to put descriptions out into the world. I lie like all writers but I use my truths as I know them in order to do so.
— Jenny Diski in The London Review of Books on discovering that she has inoperable cancer and publicly writing about it.
“His name was Ross Cagan. He did not work for Schadt; he worked as a professor at Sinai. But they met every week, and after Schadt called on October 1 to tell Cagan about Stephanie Lee, he listened to Cagan’s idea for her. A month earlier, Cagan had started doing something that he said ‘had never been done before.’ He started creating ‘personalized flies’ for cancer patients. He took the mutations that scientists like Schadt had revealed and loaded them into flies, essentially giving the flies the same cancer that the patient had. Then he treated them. ‘Why a fly? You can do this in a fly. You can capture the complexities of the tumor.’
“A day after Cagan spoke with Schadt, Stephanie became the fifth person in the world to have a fly built in her image—or, rather, in the image of her cancer. In an ideal world, Cagan would have created as complex a creature as possible, burdening the fly with at least ten mutations. He gave Stephanie’s fly three, because ‘Stephanie is on the shorter course. We’re making the fly as complex as possible given her time.’ By October 11, however, Cagan already had ‘one possible drug suggestion for her’—or one possible combination of drugs, since he always tests at least two at a time. ‘In this center, the FDA will not allow us to put a novel drug in patient. To get a novel drug into a patient, we have to do a novel combination of [known] drugs. We have to use novel drug combinations that people have never seen before'”
Stephanie Lee, a 36-year-old Iraq War widow with two children is diagnosed with terminal colon cancer and told she has just a few years to live. A group of pioneering cancer specialists at the Icahn Institute at Mount Sinai use genetic data to figure out alternative treatments to “the standard of care” that could give her her life back:
His name was Ross Cagan. He did not work for Schadt; he worked as a professor at Sinai. But they met every week, and after Schadt called on October 1 to tell Cagan about Stephanie Lee, he listened to Cagan’s idea for her. A month earlier, Cagan had started doing something that he said “had never been done before.” He started creating “personalized flies” for cancer patients. He took the mutations that scientists like Schadt had revealed and loaded them into flies, essentially giving the flies the same cancer that the patient had. Then he treated them. “Why a fly? You can do this in a fly. You can capture the complexities of the tumor.”
A day after Cagan spoke with Schadt, Stephanie became the fifth person in the world to have a fly built in her image—or, rather, in the image of her cancer. In an ideal world, Cagan would have created as complex a creature as possible, burdening the fly with at least ten mutations. He gave Stephanie’s fly three, because “Stephanie is on the shorter course. We’re making the fly as complex as possible given her time.” By October 11, however, Cagan already had “one possible drug suggestion for her”—or one possible combination of drugs, since he always tests at least two at a time. “In this center, the FDA will not allow us to put a novel drug in patient. To get a novel drug into a patient, we have to do a novel combination of [known] drugs. We have to use novel drug combinations that people have never seen before.”
They once struggled for funding. Now, Carl June and researchers at the University of Pennsylvania are drawing attention for a trial that uses gene therapy—engineered T cells—to fight cancer:
“In their natural state, T cells usually aren’t able to kill tumor cells, partly because they can’t latch on strongly enough. But June was fascinated by scientific papers showing it was possible to change this. A few researchers—first an Israeli named Zelig Eshhar in the ’80s, then other investigators around the world—had discovered that you could force a T cell to stick to a tumor cell and kill it. To pull this off, you built an ‘engineered T cell’—a T cell never before seen in nature. You altered the T cell’s genetic blueprint by injecting a new gene into the cell. The new gene would tell it to build a new molecular limb. The limb, called a ‘chimeric antigen receptor,’ would sit partly inside the cell and partly outside, and it could send signals either in or out. One signal it could send was: kill. Another was: replicate.
“June loved this approach. So elegant. Put the immune system on steroids. What if you could train the body to fight cancer on its own? What if, instead of replacing a patient’s immune system (as in a bone-marrow transplant) or pumping him full of poison (chemo), you could just borrow some cells, tweak them, and infuse them back into the patient? In theory, the engineered cells would stay alive in the blood, replenishing themselves, killing any tumors that recurred. It occurred to June that one infusion could last a lifetime.”
A teenager with cancer is fighting to make it to her high school graduation:
“At the end of her junior year, the doctors said there was nothing more they could do for Lyndsey. ‘Six months to a year,’ they told her. She might not even be alive for her family to break the no-applause rule.
“But the principal, Dan Evans, just told her, ‘Okay.’ They’d get her to June 5 at Tropicana Field.
“And so began a much quieter race to graduation, one that has not announced itself by shrieking in the hallways or picnicking on the campus lawn, but with all of that urgency and more.”
[Part Three of “Genetic Gamble: New Approaches to Fighting Cancer.”] A genetic test for people with eye melanomas reveals whether patients are likely to live or die with “uncanny precision”:
“The test identifies one of two gene patterns in eye melanomas. Almost everyone in Class 1 — roughly half of patients — is cured when the tumor is removed. As for those in Class 2, 70 to 80 percent will die within five years. Their cancers will re-emerge as growths in the liver. For them, there is no cure and no way to slow the disease.”
“No test has ever been so accurate in predicting cancer outcomes, researchers said.”
“The data from studies of the test are “unbelievably impressive,” said Dr. Michael Birrer, an ovarian cancer specialist at Massachusetts General Hospital. ‘I would die to have something like that in ovarian cancer.'”
Tracing a years-long Internet hoax back to its creator, a 22-year-old woman in Ohio:
“On the evening of May 13, Mother’s Day, a Canadian woman named Dana Dirr was hit head-on while driving to the Saskatchewan hospital where she worked as a trauma surgeon. She was 35 weeks pregnant, but determined to work until the moment she gave birth. The morning after the crash, her husband John (‘J.S.’) Dirr posted a note on Warrior Eli, a Facebook page the Dirrs had created to document their 5-year-old son Eli’s battle with cancer: ‘Last night at 12:02am I lost the love of my life,” J.S. wrote. “I lost my wife, the mother of my children, and my best friend.’ Miraculously, Dana had held on in the hospital just long enough to have her baby—a daughter, and the Dirr’s eleventh child.
“If any of it had been true, it would have made for a very sad story—the kind of story that would have taken over the news cycle on Mother’s Day, even. But there was none of that, because the Dirrs are not real. They are, in some ways, just the latest example of the countless hoaxes perpetrated by bored, lonely people the world wide web over.”
A group of Marines discover they have breast cancer—a diagnosis that is rare in men, and even more startling given they all had previously lived in the same area, Camp Lejeune in North Carolina:
“It all started with Mike Partain, a.k.a. Number One. A barrel-chested father of four with a goatee and a predilection for aviator sunglasses, Partain was born at Camp Lejeune, the North Carolina base where his father, a first lieutenant in the US Marine Corps, was stationed in the late 1960s. Now he lives in Tallahassee, Florida, where he makes his living as an insurance claims adjuster.
“Five years ago Partain’s wife noticed a grape-size bump next to his right nipple. ‘I thought it was from an ingrown hair or something. I blew it off,’ he recalls. But a couple of weeks later he decided to get it checked out. When his doctor ordered a mammogram, he remembers, ‘a chill went down my spine.’ Then came a sonogram: Partain watched in amazement as an image emerged on the screen looking like one of the globular star clusters he knew as an astronomy hobbyist. ‘I never even knew men could get breast cancer!’ he says.”
On Jan. 21, 1993, the television talk-show host Larry King featured an unexpected guest on his program. It was the evening after Inauguration Day in Washington, and the television audience tuned in expecting political commentary. But King turned, instead, to a young man from Florida, David Reynard, who had filed a tort claim against the cellphone manufacturer NEC and the carrier GTE Mobilnet, claiming that radiation from their phones caused or accelerated the growth of a brain tumor in his wife.
One fine June day, the author is launching his best-selling memoir, Hitch-22. The next, he’s throwing up backstage at The Daily Show, in a brief bout of denial, before entering the unfamiliar country—with its egalitarian spirit, martial metaphors, and hard bargains of people who have cancer.
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