In December 2014, nivolumab was granted accelerated approval by the FDA under its new brand name, Opdivo, as a treatment for advanced melanoma. The drugs that I was a little lab rat for just a short time ago are now within reach of patients outside of clinical trials, which means that for a lot of people getting some really bad news from the doctor—right now, today—the odds of surviving are a lot better.
The ipi/nivo combination, meanwhile, continues to be explored for other forms of cancers. In 2012 and 2013, the first trials for lung and kidney cancer patients began. At this writing, there are patient trials using my drug combo for various forms of cancer, including lung, breast, renal, colorectal, pancreatic—and ovarian. In 2015, Opdivo was approved by the Food and Drug Administration for advanced non-small cell lung cancer. By the fall of that year, television commercials thanking “the patients and physicians who participated in the Opdivo clinical trial” began airing on television. And in October, the FDA approved the Yervoy-Opdivo combination for certain kinds of metastatic melanoma, making it “the first and only FDA approval of a regimen of two immuno-oncology agents in cancer.” The Wall Street Journal reported at the time that the regimen “will cost more than $250,000 per patient for the first full year.”
I have a lot of thoughts about the high cost of treatment, and I am not alone. In a letter “In Support of a Patient-Driven Initiative and Petition to Lower the High Price of Cancer Drugs” in the journal Mayo Clinic Proceedings in July 2015, more than 100 leading cancer doctors declared that the rising cost of treatment is “causing harm to patients with cancer and their families” and called for “a cancer patient–based grassroots movement that advocates against the high price of cancer drugs.” Among the signers was James Allison. I agree with him wholeheartedly. Yet I also know that just to imagine a year of treatment is a luxury not everyone has. As Jedd Wolchok has noted, “When I joined the MSK faculty in 2000, the median survival for patients with advanced melanoma was seven months with the best treatment available at that time.”
Meanwhile, the research goes on. There are ongoing trials using my two drugs in combinations with other forms of treatment, and more still using other immunotherapies. There are ones involving monoclonal antibodies, like mine was. There are adoptive T cell trials and vaccine trials—and many of them are seeing similarly stunning results. The field of immunotherapy continues to gain unprecedented recognition and respect. In September 2015, James Allison won the Lasker Award, one of the highest honors in scientific achievement, for clinical medical research. In announcing the award, the Lasker Foundation praised him for his work with “advanced melanoma, a disease that typically used to kill people in less than a year,” saying, “His discoveries are transforming cancer treatment.”
Dr. Wolchok tells me, “I feel like all those years of frustration and advocating for the religion of immunotherapy really did pay off. None of us could do this alone. I think that’s really important. We needed Jim Allison and Jeff Bluestone, and we needed Lieping Chen and Gordon Freeman and Arlene Sharpe and Tasuku Honjo, who discovered PD-1. We needed all of those people to deliver the very elegant details of how the immune system turns itself on and off. And then we needed our colleagues in the pharmaceutical industry to develop medicines that could do that. And then we needed courageous investigators who believed in the science to bring it to patients. And then, most of all, we needed courageous patients.”
“Courageous?” I ask him. “Or desperate?”
I know that fate will take different turns for all of us, even those of us going through very similar cancers and treatments. On a bleak, chilly morning, I am visiting Dr. Wolchok’s lab to peer behind the final curtain: to see where my team has labored for years behind the scenes, unlocking mysteries inside of cells and peering into ultrasensitive microscopes. As Dr. Wolchok leads me around, I even get to meet some lab mice—the real ones—working on my trial and others. “Hey, guys,” I say as I lean down toward a cage of furry creatures. “Thank you.” They’re giving so much, and it’s not every day someone who has directly benefited from their efforts gets to meet them. I appreciate the effort, little fellas.
But though I will see some of the newest, most innovative medical equipment in the world today—and though I will meet some of the brightest and most dedicated scientists a patient could wish for—none of what I see this morning comes close to what I hear. Because today, Dr. Wolchok has had some unique business to take care of, and he wants to tell me about it. A patient of his has died.
When you work with people with advanced cancer that is often unresponsive to treatment, and you do it over years and years and years, I imagine you get pretty used to a sizable number of your patients not surviving their disease. But as Dr. Wolchok admits, “Sometimes, you have someone who’s very special. This man was one of those.”
Shortly before he’d died in his suburban hospital closer to his home the night before, the patient, who had been on a single immunotherapy drug, had had a practical conversation with his wife and kids about what he wanted to happen when the end came. His adult son had given Dr. Wolchok the message. “I got a call from his family when he was very ill,” he says. “He wanted to give us his body.” His face is a mix of emotions—sadness, gratitude, and wonder chief among them. “I said there were logistical challenges doing it from an outside hospital,” he continues. “The son said, ‘Tell us what those challenges are and we’ll meet them.’ ”
So yesterday, a funeral home had brought Dr. Wolchok the shell that contained someone who had very recently been a collection of thoughts and feelings and memories. It made its way into the city in rush hour, until it arrived at Memorial Sloan Kettering Cancer Center. “He gave us everything,” Wolchok tells me in awe. “There’s so much we’re going to be able to learn from him.”
Wolchok has just lost a person who, although not a close friend or relation, was nonetheless a human being he respected and was invested in. His regard for him as a person is clear. His fascination with his body as a specimen is also evident. “The family was incredibly helpful,” he says. “And we were very grateful.”
I’ve had doctors who possess the detachment of auto mechanics—ones who, like the guy who viewed me as “the tumor,” see patients solely as their individual parts. Some of them are capable and efficient healers, the kind with a robust track record of success. But when I am with Dr. Wolchok, I am aware that I have found a physician who somehow can see both the patient and the parts. That’s how we’ve been able to collaborate on my care, and why I’ve been able to trust him so completely with it. Now, in this lab—his lab—seeing how seriously he takes that trust, even from a patient who has died, I have a newfound admiration for him. And I know beyond all doubt that cremation versus burial isn’t a top consideration anymore. I’ve already given my blood and urine and mucus and flesh to science—but God willing, I’m not nearly done. I want to be as generous in my final act as Dr. Wolchok’s newly departed patient was. I want to be able to give that gift, too: to die knowing that I can still be useful to scientists—and, I hope, ultimately, to other patients.
I am not brave. But I am proud. I’m proud to know so many of the men and women who are making medical breakthroughs possible. I’m proud to know that the cancer cells that tried to kill me are part of the research that is now being used to try to save other people. Because for the rest of my life I am going to have to comb my hair against the natural part to cover up five centimeters of bare flesh. The place where I got sick. The place where I was changed. The place where the story of Patient 1626 began. And every time I look at that ravaged head of mine, I am going to try not to just see Götterdämmerung; I am going to try to see the beginning of my little part of medical history.
February 9, 2015
I am sitting at the Indian Road Café on a winter afternoon near what would have been Debbie’s birthday, listening to Lou Reed offering advice on which side to take a walk and writing these words. I am sitting with a perfect view of Leo’s old perch by th
e door. I am sitting on the same stool I sat on when I came here the day I found out I had another malignant tumor. And I am raising a glass to all of us. I am raising a glass to something Jeff said to me recently that best sums up the last few years. “Healing isn’t the same as curing, but healing is good stuff,” he’d said. “Healing is fine. Let’s go with that.” So here’s to healing. And not just with regard to the cancer.
I know people who’ve been through near-fatal disease are expected to become rousing exemplars of kicking ass. But cancer did a very good job of kicking mine. I’m not some TV movie, singing P!nk songs into my hairbrush and getting all wise and inspirational. Instead, a once carefree wedge of my personality is now permanently removed, replaced by a very real and often horrible sense of the fragility of life. There are days when I think I’ve had this monumental experience. I’m a different person. So how can I have lived through all of this and still get so pissed somebody’s clipping his nails on the A train?
I fail all the time. I snap at the kids. I stay up too late. I forget to bring a cloth bag to the supermarket. I struggle with my guilt for getting sick, and my guilt for getting better. I am reminded daily that there’s nothing about getting a disease that’s inherently ennobling, and in real life, there’s a whole lot of physical pain and emotional trauma in the mix as well. But if enduring illness and death and facing your mortality and losing people you love doesn’t teach you something, you’re probably a dope. So here’s what it taught me. It’s taught me that kale and prayer are terrific and necessary; and also that if you get cancer, you can’t kale your way out of it and you can’t pray your way out of it. But if you are very, very lucky, you may be able to science your way out of it. It’s taught me that heartbreak and gratitude can coexist. It’s taught me that the dramatic and the banal can too. It’s taught me that you must accept that life isn’t fair, and that randomness can work in your favor as often as it screws you. It’s taught me that the gift of cancer is a terrible gift. The best you can do with it is try to make it count for something. That, as I figure it, is the work of the rest of my life. And that work will never be a battle. It will instead be what it’s always been. A love story.
Want to help?
The world does not lack for organizations that help people with cancer—and their loved ones—in a variety of meaningful ways. My own experience has been most directly aided by the following. They all do incredible work.
Gilda’s Club New York City: Gilda’s provides free support groups, as well as classes, lectures, events, and Camp Sparkle, a free day camp for children with family members living with cancer. It would be impossible for me to overstate the impact that Gilda’s community has on its members or how miraculous my family’s experience with this tremendous organization has been. Along with my endless gratitude, I am giving 5 percent of the money I receive for this book to Gilda’s. If you’d like to give a tax-deductible gift too, it’s as easy as going to their Web site:
https://donatenow.networkforgood.org/GildasClubNYC
Or just send a check to:
Gilda’s Club New York City
Development Office
195 West Houston Street
New York, NY 10014
The folks at the Cancer Research Institute have been carrying the torch longer than anybody. They believed in the impossible, and they have supported some of the most innovative science in the history of cancer treatment. They’re also an absurdly nice group of people. You can find out more about them by going to www.cancerresearch.org.
I am extremely awed by and indebted to the good people at Stand Up to Cancer, whom you can help out at www.standup2cancer.org, and the Melanoma Research Alliance, www.curemelanoma.org.
Memorial Sloan Kettering, in addition to being on the cutting edge of research and treatment, is also the warmest, most patient-centric facility to which I have ever been. I wish every person facing cancer could have the kind of experience I’ve had there, of support and kindness and generosity. You can learn more about Sloan Kettering, including ways to get involved in the work that goes on there, at www.mskcc.org.
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Chapter 2: Best Summer Ever
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Interlude: Cancer for Beginners
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Chapter 3: Welcome to Cancer Town
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Chapter 5: Don’t Call Me a Survivor
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Interlude: Immunotherapy 101
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A Series of Catastrophes and Miracles Page 26