Or one from the Annals of Surgical Oncology in 1994:
Induction of lymphokine-activated killing with reduced secretion of interleukin-1β, tumor necrosis factor-α, and interferon-γ by interleukin-2 analogs
What do these mean? What can I learn from them? My head spins. Making it even more confusing, almost all the papers have studied the most common version of kidney cancer—clear cell cancer. There are almost no references anywhere to the rare and mysterious collecting duct cancer, so we really have no reason to know one way or another if anything will work on Terence.
Still, some of the papers I download seem encouraging. They talk about “response rates” and they seem to be saying the same thing that Dr. Pierce and the drug’s maker are saying. Some studies say the “response rate” for IL-2 in kidney cancer is 8 percent. Some say 15 percent. Some go as high as 23 percent. There are weird abbreviations. CR. OR. PR. DR.
After a bit I tease out the code: Complete response. Objective response. Partial response. Durable response. All good. These various categories are measuring whether the tumor reacts to the therapy. Does the tumor shrink? Vanish? If so, for how long?
The more I read, though, the more puzzled I become. I understand that having the tumor shrink is a good thing. Perhaps a very good thing. But what I care about is not Terence’s tumor. It is Terence. I want to know if anything is going to make him live longer.
And so I scour the papers one more time for answers to the question I have most on my mind: So how long do these people live? If they take the IL-2 and the tumor shrinks, do they live longer? If so, how much longer?
The papers are mysteriously vague.
I find one paper from 1993 that suggests evidence, but not proof, of longer survival. (“How long? HOW LONG?” Frustrated, I begin shouting at the papers themselves.) I am not a skilled scientific researcher. The terms confuse me.
Instinctively, I understand that it is easier and faster to measure the way the tumor responds—a scan every three months can provide a comparison, while survival is so much more complicated to figure out. Yet I am sure I must be missing something. Isn’t survival the point? Why will none of these papers tell me how much longer this treatment will make my husband live?
It isn’t until I go looking again nine years after our meeting in Dr. Pierce’s office that I find references to studies sharing my frustration. I find a Canadian group that tabulates fifty-three studies totaling 6,114 patients and concludes that tumor response doesn’t correlate very well with survival at all in kidney cancer patients. Did we suspect that even back then? I have no idea.
Now, in the fall of 2009, I sit across the desk from Dr. Pierce. I want to know: Why IL-2? Why did you and Terence make the choices you did?
Dr. Pierce’s simple answer: That’s all we had.
There are two kinds of patients who come to him, he explains. One kind wants to be left alone, to know as little as possible, to be confronted by as little as possible, to do as little as possible. This might be someone who is old, who is already at the end of a long life. Someone fearful. Or, very likely, someone in tremendous pain from an advanced case.
Terence is none of these people. He is only three-quarters through the life he expected. He is still relatively healthy otherwise. He is not in pain. He has a young family. He wants Dr. Pierce to fix him. In this, Dr. Pierce says, he is like most people.
“I know that he wanted to get better. Who wouldn’t?” Dr. Pierce says. “He would have been willing to do anything. I think most of us would be that way. He may have been a unique human, but he shared the emotions of most. It’s strange the hell people will go through to keep living,” he says. If not for themselves, they “maybe live for their wife, or children or grandchildren.”
Before interleukin-2 was approved in 1992 to treat kidney cancer, Dr. Pierce had nothing to offer. With interleukin there was at least a chance. Dr. Pierce, and Terence, both know it was a slim chance. It was a chance nonetheless.
In fact, for Dr. Pierce, the pain of the job comes from just how empty his hands often are.
People like Terence—and me—“want you to come up with anything possible. I will run out of ideas and they’ll still be standing there looking at me, saying, ‘What can you do for me?’ ”
As for money, Dr. Pierce is more aware than most of the strange conflicts that insurance and Medicare impose on doctors like him. The reason he is in a smaller office now is because of a 2005 change in the way Medicare reimburses doctors for chemotherapy drugs. Oncologists make much of their income essentially “selling” chemotherapy drugs to patients, with Medicare paying the doctors higher prices than what it costs the doctors to buy the drugs they are administering. Back in 2005, Medicare cut the amount it reimbursed. Many doctors switched to prescribing drugs that would earn them more money.
Did that affect the drugs he prescribed?
“The physician’s cash cow is chemotherapy,” he says. “You really have to be ethical.” It cut into his income and he downsized his office.
Dr. Pierce is also more aware than most of what insurance coverage—or the lack of it—means to patients.
His practice is in the relatively well-off university town of Lexington. Yet like all doctors and hospitals in Lexington and Louisville, his office is a magnet for patients from all over the region, including the desperately poor Appalachian eastern part of the state. He muses about a recent patient, a woman recovering from breast cancer surgery. There are two drugs she can take to reduce the risk of her cancer returning. One is an aromatase inhibitor, a relatively new kind of enzyme blocker that will cost three hundred dollars a month. The other is tamoxifen, an older drug that Dr. Pierce says she can get at Wal-Mart for three dollars. The more expensive drug is, in Dr. Pierce’s estimation, about 20 percent more effective. Four thousand dollars a year. Twenty percent greater chance of keeping a cancer at bay. She doesn’t—can’t?—do it.
12
What makes me think curing Terence’s cancer is my responsibility?
What makes me think I can find things the doctors can’t? It’s not just hubris, I tell myself. I’m not completely crazy. I have seen other people—one a dear friend, the other a longtime colleague—both thread the needle of despair and almost certain death and emerge on the other side with a cure. My friend was snatched from dying of AIDS by a chance introduction to a doctor who prescribed an experimental antiviral cocktail. The colleague beat leukemia with a cutting-edge bone marrow transplant. Both were told they were at the end of their lives. Both arrived at their cures only through mighty research, bravery, and luck.
I’m smart, I’m strong, I’m brave, I tell myself. If I try hard enough, I can save Terence too.
But how?
In search of the answer, I become part of a cancer community.
Terence always maintained that Americans are joiners. For every imaginable human activity—and for some that defy imagination, he said—you will find a group with a president and a board of directors. They will have meetings and newsletters and agendas and jealousies and a certain amount of huffing that not all members are equally pulling their weight. Whatever these organizations are, they will have T-shirts that say “WHATEVER—and proud of it!” And bumper stickers that say “I ♥ WHATEVER.”
One day in New York Terence set out to prove his theory. During the early 1990s, when Terry was a baby, and before Georgia entered our lives, we planned surprise excursions for each other—a day at a sculpture garden, a nighttime picnic at the Cloisters, chocolates and a bottle of champagne on the ice at Rockefeller Center.
“Dress up!” Terence commanded one Saturday morning. “Terry too.” He was already in a nice business suit. We were heading for the day’s surprise.
I put on a dress. Stockings. Heels. Even a little makeup. I shoe-horned three-year-old Terry into a nice polo shirt and slacks. We piled into the car. We headed east across Manhattan, over the Tri-borough Bridge, past LaGuardia Airport and off into Long Island. We drove for a long time. We c
an’t be heading for a theater, I thought. We wouldn’t be taking Terry to a theater. It must be some wonderful new restaurant Terence has discovered. Something ethnic. In a quaint neighborhood. We both like that. We exited the Long Island Expressway and began twisting through environs that had seen better days. We pulled into a parking lot behind a dingy VFW hall. Terence headed to a desk just inside the door and bought three ten-dollar tickets.
Inside the hall was a massive, three-state show of canaries.
Birds.
The hall was filled with rows of caged canaries. Bright yellow domestics. Fluffy white ones. Birds with amazing pointed crowns of feathers. Canaries that sat silent in their cages and ones that sang out across the room. There were Lancashires, Yorkshires, Spanish Timbrados. There were birds in onyx and brown, Venezuelan Black-Hooded Red Siskins, German Rollers, Persian Singers, Russian Singers. We roamed the hall, amazed at the variety.
Terence was smug. There, on the table just outside the main hall, was living proof of his theory: T-shirts. A newsletter. Bumper stickers. Canary Breeders Make Better Lovers.
Canary breeders. Kidney cancer. For everything there is a community. And, by the time Terence is diagnosed, there are not only bumper stickers and T-shirts. I find on my computer that there are listservs.
Kidney-Onc, the online gathering place for all things kidney cancer, was a pretty dreary place when I first briefly peeked into it back in Oregon in January 2001. Like all such forums, it is a kind of online conversation among dozens, sometimes hundreds, sometimes thousands of people. Yet even though people have been regularly gathering here to chat for nearly five years, few seem to have any more ideas, or options, than I do.
As I look back over the postings from the first two months of 2001, I see people asking questions about a German vaccine, about antiretroviral treatment, Shaklee vitamins, stem cell transplants, antioxidants, mushroom compounds, a tantalizing reference to “anti-VEGF” compounds, a man whose wife is about to be treated using the anti-AIDS drugs Viramune and Epivir, and one query about the acne drug Accutane as a possible cause of, or cure for, kidney cancer.
Fourteen months later, just after the dark lonely night when I pondered the cancer’s return, I am searching for what to do now. I log back into the community and find that something is different.
The group is still behaving as Terence said that any group will: There are leaders—RobinJoker, a knowledgeable and opinionated contributor, has posted information on the site 1,700 times since Terence’s operation. There are followers—“I’m new here” reads a common subject line. There is a group language: “Uncle NED!” reads one post, which turns out to be excitement that the last scan has found “No Evidence of Disease.” There are hurt feelings. “Take me off this List NOW!” commands one person, upset that someone in the group has questioned her choice of treatment. There are even the T-shirts Terence predicts. They read “SCAN THIS” and are offered by one of the group’s members.
What is different about the Internet group in May 2002, from January 2001, is the range of treatments people are discussing—and subjecting themselves to. There are still lots of references to things that—even to my hopeful eyes—seem improbable. A post on the usefulness of cruciferous vegetables and a vegan diet. One on vitamin B12. The report from someone whose disease has stabilized after a laetrile treatment at a clinic in Mexico.
Now, however, there is also chatter about clinical trials of a whole variety of oddly named compounds.
Some of these trials must have been going on all along. Suddenly the conversation is getting louder.
With the benefit of hindsight, it is easy to pick out the proper pathway from the clutter. Several patients talk about a trial of CCI-779 that they are beginning; that drug later will become Pfizer’s Torisel, used against difficult kidney cancers that respond to nothing else. There is chatter about bevacizumab, which will become Genentech’s Avastin, which Terence will eventually use on trial.
Yet in 2002 they are just part of the stew. They don’t stand out. Avastin bumps up against cryoablation—freezing the kidney cancer in place using radiation. Torisel is discussed right next to stem cell transplants. Patients on the listserv are being treated with radiation. Thalidomide. Interferon. Alone. In combination. In high doses, in low doses. In trials. In offices. In hospitals. People are taking drugs that work against one cancer—Iressa, Tarceva—and trying it against kidney cancer too. Patients swap doctors’ names like trading cards. We compare hospitals. Where should we go? Whom can we trust? We all pore over the list. Is this doctor for me? Does this drug show promise? Should I try it? Should I switch what I am doing? Can I thread the needle? Can I push the bell curve?
How much money are people spending on this chase? It’s hard to tell, although the topic is never far from people’s minds. There are endless online discussions of insurance coverage and Medicare rules. One man asks the group for help: Should he spend $350,000 to enroll his sister in a trial of stem cell transplants in Seattle? One talks about trying to talk his insurance company into covering $2,500 a week for the same kind of IL-2 treatments Terence is getting. One asks the list for help figuring out how to import Anzemet that his aunt is taking for nausea now that her insurance company has stopped covering the hundred-dollar-per-tablet cost.
A man in Pakistan reports on his dad’s treatment using a Texas doctor’s protocol: “If this may be of any interest to you guys I just wanted to report and ‘accurately’ that the four drug combination cost of interferon, thalidomide, capecitabine and Coumadin is coming to Rupees 73000 total per month ie in Dollars 1200. And this is the total cost.” He goes on. “These meds are all being imported to Pakistan and it is very interesting to note that obviously these meds are not as expensive to manufacture as they are being sold in the United States.” He asks: “I wonder what’s the profit margin???”
The group on the Internet is in general very friendly. I email one man and he writes back immediately with detailed information. I ask a couple about a program in Texas. They respond offering me their guest room. Amid all the noise, though, one name stands out for me, because the woman who calls herself lmodrngrrl—who turns out to be a modern furniture dealer named Laura Lear—is writing about her boyfriend, who has collecting duct cancer! What’s more, as I scroll through the history of her postings I discover that they have settled on Gleevec as a treatment for him—the very Gleevec that I had been looking at back in Oregon. And it seems to be working! I find a message she posted in February 2002, after Robert had begun taking the drug:
The last week has been each day better than the one before. He has regained his appetite, is doing more each day, is less and less tired, looks better than he has looked in a year, and today I just couldn’t believe how “normal” he was at work. This is very unusual for us as Robert has been very sick.
Excited, I contact her, and on May 12, 2002, I post a message myself for the group.
Hello—
I’ve just finished cruising several years’ worth of archives, and notice that there are several of you who are diagnosed with collecting duct carcinoma. My husband had a radical nephrectomy in January, 2001, and the diagnosis was collecting duct. His first scan in August, 2001, was clear. His second scan, in February, 2002, showed numerous small nodules on his lungs. He’s now being treated with IL-2, low dose. We were given the standard “13-month mean survival time” speech, and that there isn’t much more than IL-2 that can be done. But after cruising the Web for two days, I’m up for trying a lot more than that. We’ve registered at MD Anderson, where I see there is an open RCC clinical trial of some antiangiogenesis agents. Also, based on Laura’s experience with Bob, I am requesting that his slides be retested. Also on the advice of Laura, I’m looking into Gleevec. I would like to be in touch with anyone else who is dealing with collecting duct cancer, as I can see that there is very little firm knowledge about it. I’d like to learn from your experience, and also share my own, as I am prepared to go into full research mode. Laura—I se
nt you a private email, but if you see this first, I’d love to be in touch.
Thank you!
Amanda Bennett
wife of Terence Foley
diagnosed 12/00
radical neph 1/01
mets to lung 2/02
currently on IL-2
Looking back at that post today, I am struck by two things. One is how quickly I adopt the coloration of the group, with the little abbreviation-studded biographical tag at the end. The second is how startling the date is in retrospect. The date of the posting—May 12, 2002—is only six days after our son’s frightened phone call to me. I’ve gone into hyperdrive.
Seven years later when I pore over Dr. Pierce’s medical records from those days, I can re-create my own frenetic path:
May 22—foley returns accompanied by wife. She has found about six different protocols. One involves c-kit, others chemo. One considers use of iressa and another with vascular growth factor inhibitor.
Over the next five months of notes, there are references to a request to look into angiogenesis inhibitors. Another request for a “battery of tests” at a specialized lab in Illinois, and then later the results of those tests. The tests show that Terence’s tumor is positive for the protein HER2/neu, which makes breast cancers more aggressive. That makes him a candidate for the breast cancer drug Herceptin. I seek, and get, approval from the insurance company to try that drug too.
• • •
Behind the scenes something is happening that I—and perhaps most of the people in the Internet group and even their doctors—won’t fully understand for years to come.
For decades all cancer was treated pretty much the same way: Cut it out. Bombard it with chemicals—chemotherapy—or try to burn it with radiation.
For kidney cancer, IL-2 was a new pathway, working off the idea that the body’s immune system could be harnessed to help fight the cancer. Now something new is happening, as a twenty-year-old concept begins to be tested in earnest. Tumors depend on angiogenesis, the process by which they build blood vessels to feed themselves and grow. Cut off their blood supply and the tumors will shrink and die.
The Cost of Hope Page 10
