Note: Among other things, this longish post addresses the anxiety of knowing something’s very wrong with a key part of your body after you thought it had been fixed; the state of kidney cancer treatment now and in the future, the cost conundrum; and the psychological toll that having advanced stage cancer takes on us and our families.
The setting is the 2016 Kidney Cancer Symposium, co-sponsored by Beth Israel Deaconess Medical Center, Dana-Farber Cancer Research Institute, and Harvard Medical School. Think of this as a bonus chapter to Immunopatient. Who knows, there may be more. Thanks for reading. As always, I welcome your comments.
I walked slowly to mask my slight hobble into the lobby of the Marriott Hotel in Newton, a suburb of Boston. I found my event – The 9th Annual Kidney Cancer Symposium – listed on a flat panel television screen next to the reception counter. The medium-sized room turned out to be in a far corner of the hotel’s sprawling first floor. Down one long carpeted hallway after another, I tried to focus on maintaining a stride with good form.
It wasn’t easy. My right knee and thigh were shooting pain signals to my brain. I was slowly transitioning from delusional denial to acceptance that I had done some sort of internal damage. The site of the pain was hard to pinpoint. It darted around, from my thigh, to my knee, to my hamstring, to my knee ligaments.
Still there was this: eight weeks after she had screwed a small plate onto my right femur just above the knee, and four weeks after 10 radiation treatment sessions to target a recurring tumor there, Dr. Megan Anderson had cleared me to resume full activities.
I decided to take her at her word. That weekend I had easily hiked a scenic, flat trail around Goose Pond in Keene, and went out for two exhilarating sails on a windy Spofford Lake, once with Katharina and once by myself. Endorphins masked any pain I should have been feeling, as I leaned out of my boat to counter the wind that was filling the main sail and the smaller jib sail of my old Javelin.
The wind would have pushed both sails into the wavy water were it not for my counterweight, but I wasn’t worried about that. After eight weeks of taking it easy, I was having a blast. It wasn’t until I was back on shore, clambering on top of the boat to bring in the sails, that I really noticed the pain. A week later it hadn’t really subsided. I was going to give it a few more days to get better before I called the doctor.
I entered and scoped out the ballroom, threaded my way through a number of round tables and picked a table toward the front and to the side. I sat down and introduced myself. There were still a few minutes before the program began, and a few of us shared our backgrounds over coffee. Across from me, attending with his wife, was a physician in his 70s who had been advised to give up his practice after his recent Stage 4 diagnosis.
“I don’t know what to do,” he said as his wife looked at him. “I’m not ready to retire yet, but I know this is going to be one hell of a fight.”
To my right was a librarian from Cambridge whose husband had died a few years earlier, at age 50, just one year after receiving his diagnosis of advanced stage kidney cancer. She told the table she attends the symposium, and donates to Dr. David McDermott’s research, because she appreciates what he was able to do for her husband Jeff and other kidney cancer patients.
“I see Dr. McDermott too,” I said. “He’s the real deal.”
Dressed casually in a blue fleece sweater and slacks, McDermott at that moment was at the front of the large conference room, removing some notes from a scuffed leather satchel while chatting with Dr. Toni Choueiri. Choueiri was dressed in a crisp blue and white checkered shirt, with a salmon colored tie and a blue blazer. Though McDermott worked at Beth Israel and Choueiri at Dana Farber, the two worked together closely.
McDermott, along with William Kaelin of Dana Farber, was co-director of a multi-center kidney cancer research initiative funded by the National Cancer Institute. Called SPORE, for Specialized Programs of Research Excellence, SPORE grants promote interdisciplinary collaborations among basic scientists and clinical investigators. SPORE’s mission is move the needle on early detection, diagnosis and treatment of diseases affecting 18 different organs. The kidney cancer SPORE is the only one in the nation, and has been Boston-based since 2004. Its grant was recently renewed through 2020, to the tune of $11.2 million.
I was a good example of how SPORE’s goal of collaboration across clinics, centers and hospitals benefited patients when put into practice. I had started my care under Choueiri at Dana-Farber until he passed me along like a baton to McDermott so that I could undergo High Dosage Interleukin-2 treatment at Beth Israel, the only site in New England to offer this intense form of immune therapy that required an initial hospital stay of two weeks.
McDermott kicked off the symposium by welcoming the patients and caregivers in attendance, introducing himself and his fellow panel members, and giving an overview of what he hoped the day would bring.
“The beginning part of today will be talking about research and science and new treatments,” he said. “Then towards the end of the morning we’ll transition and talk a little bit about how do we live better with this condition? How do we make the most of a difficult situation?”
The afternoon would bring caregivers and patients together in separate sessions to meet each other and talk about what they’re going through, McDermott said. A final session would feature a Q & A session and an overview of trends in kidney cancer research. The ultimate goal for the once-per-year gathering was to create a network of patients and caregivers who that stayed in touch with each other much more frequently than that.
“Those networks exist with other cancer types, but not so much with kidney cancer,” he said. “There’s a lot more patient support for conditions like breast cancer. We’re trying to build something like that here in Boston and in New England for our patients in hopes of having more meetings like this and more opportunities to support each other.”
Competing at times with a noise coming from the ceiling that sounded like a jackhammer crew tearing into a block of concrete, McDermott gave an overview of kidney cancer’s quirks before describing treatment options of the past present and future.
“It’s not the most common type of cancer in the U.S. – it’s probably 7th or 8th on the list, which is part of the reason why it’s underfunded when it comes to research dollars,” he said. “Like many forms of cancer, it tends to affect people as they get older. And unfortunately about a third, maybe, 40 percent of the people who present with kidney cancer have it diagnosed after it’s already spread.”
A few of us at the table shot knowing glances at each other.
“That’s a major weakness in our field,” McDermott said. “It’s something that we’re trying to address head on. We’re trying to come up with a better screening test, a better way of detecting it early because, as you know, with most forms of cancer, and kidney cancer is no different, if it’s detected early it’s very treatable. It’s very curable.”
The jackhammering stopped and McDermott gave a thankful glance skyward as he tapped his laptop and an image of a tumor inside a kidney appeared on a screen. The tumor and the kidney had been injected with contrast dye to show a dense web of countless blood vessels inside the kidney.
“This is a very vascular tumor, meaning lots of blood vessels,” he said. “A lot more blood vessels than the average cancer, which makes it hard to kill with chemotherapy, for example.”
Over the past ten years, McDermott recounted, treatments have been developed to target the tumors’ ability to make blood vessels. These so-called targeted drugs, which include sunitinib or Sutent, extend survival for many patients, but also come with significant side effects. The bigger challenge, McDermott said, is that “the tumors figure out a way to go around this effective block all too quickly. “
McDermott said that Cabozantinib, a new treatment in this category, seems to do better at blocking tumor growth for longer than other existing treatments, and looks promising for kidney cancer as well.
But the drug treatment causing the most buzz and holding the most hope for patients was immunotherapy, McDermott said, even as he cautioned that the hype still exceeded reality for far too many patients.
“One thing you hear about a lot, both in the medical literature but also in the lay press, is immunotherapy,” he said. “In our leading journals like Science and Nature it’s probably the biggest story in oncology over the last five years. But it’s also in Time magazine and on CNN. The bottom line is it’s, in some ways, made a huge impact.”
McDermott paused and gave a sober look at the assembled patients and caregivers.
“But at this point, in some ways, the hype of what we can offer, benefit‑wise, has exceeded the real true potential,” he said. “The questions for us are: How we can improve on the advances we’ve made so far? And: How we can do better for more patients? It does work well, but for too few patients at this point.”
The fact that cancer treatments, even the most recent and seemingly full of promise, do not work for everyone was not a surprise to me and many others who attended the conference. I can’t speak for others there, but I know in my case that immunotherapy represents another option and another reason for hope. And hope is important. It provides the reason find the courage and spirit of acceptance you will need in the face of cancer’s savage, frightening, unrelenting, and too often fatal assault.
The courage and wisdom of cancer survivors was made clear during a session for patients titled “Beyond the Medical Diagnosis: A Look at Psychological Adjustment for Patients and Their Caregivers.”
The patient session (there was a separate gathering for caregivers) took place in a small, windowless conference room. Stackable hotel chairs were arranged in a circle that eventually held about 30 patients of different ages and perspectives on coping with cancer.
“We don’t sweat the small stuff,” said a woman who had been quiet when seated at my table, but who found her voice among this group of fellow patients. “I’ve had cancer three times in my life. I come from a large Greek family. We fight a lot, but we help each other too. If we have a problem come up, we work together to fix it.”
Another patient seated to my right with slicked hair and dark clothes looked brooding and sullen, until he described how cancer had changed him.
“I’ve become more spiritual and by that I don’t mean praying all the time,” he said, gesturing into a praying hands stance. “What that means to me is helping others, and going to my treatments with a smile on my face, and joking with everyone around me so I can make their lives easier.”
When a man to my left talked about lingering too long in the “Why Me?” phase following his advanced stage cancer diagnosis, a woman across from me, dressed like an executive in muted, tasteful, and expensive-looking tones, lamented that she wasn’t allowed to experience a period in which she felt sorry for herself.
“No one let me get away with self-pity,” she chuckled ruefully. “Everyone was saying things like ‘You’re so strong,’ or ‘You’re the strongest person I know – you’re such an inspiration.’ Inside I was thinking, ‘Why do I have to be the strong one?’”
It was a good question. It prompted me to speak up.
“It’s hard to be strong all the time, but it seems that’s what people want from us,” I said. “And I think I should be strong so I’m not a burden to my wife and family. When I was diagnosed I let some people know through email. A few of them wrote ‘Be strong!’ or ‘Stay strong!’ It was like everyone was Googling ‘How to Interact with Cancer Patients’ and they were being told to say this.
“I didn’t know how to take that at first,” I continued. “Did they think I was weak? Then I realized that maybe they didn’t know exactly what to stay, or they wanted to be encouraging.”
I paused and looked at around.
“Now that I’ve been a survivor for more than five years, I do think of myself as strong,” I said. “It took a while. I’ve been through some stuff, and I know I’ll probably have to go through more. I want to do whatever I can to deal with cancer and to beat it if possible. And if I don’t beat it, I don’t want to be a burden to my wife or family.”
I shrugged. “I don’t see that as strength. More like survival instinct. But at the same time I’m only willing to go so far. If my quality of life goes down and the cancer gets too aggressive I’m not going to fight it forever. At some point I’ll throw in the towel. And that will take strength too.”
I got no disagreement. Instead, there was a change of subject.
“I’d like to remind everyone, because I remind myself the same thing, that it’s important not to get too self-centered,” said a man with graying hair and piercing brown eyes. “Cancer sucks, but not just for us, but our whole family. I think of my kids and my wife and how it’s affecting them. I try not to make it always about me. It’s hard because there are times when I need help and I feel like such a burden on others. But talking about other’s people’s lives and challenges instead of about mine is really important. It’s not just about me, and I want my family to know that, and I want my caregivers, doctors and nurses to know how much I appreciate them.”
The hour spent seated at the circle passed quickly. Soon it was time for another session, a Q and A with a panel of experts from Dana-Farber, Beth Israel and Harvard Medical School. There were questions about treatment, and side effects and research. But there was a question that had been nagging at me for a while and it had nothing to do with the science behind the latest and greatest cancer treatments. It had to do with the cost.
I raised my hand. Choueiri nodded at me.
“My question is about what you think should be done about the cost of these treatments in the health care system,” I said. “You showed a slide earlier that asked ‘How much immunotherapy is enough?’ That’s a very good question considering how expensive these treatments are. Another question related to cost is ‘How often?’ Some of the protocols call for treatment every two weeks, others every three weeks. On my bill, one injection of Nivo is about $26,000 — if I had to pay for it. That’s a huge cost that the health care system is absorbing, somehow. Any thoughts on that?”
Dr. Dror Michaelson, a tall, dark-haired oncologist at Dana-Farber, reached for the microphone.
“Can we we split cost into two things?” he asked. “One, is the country, the budget, the gross national product, the percentage of GNP that healthcare takes up, and the public policies that people above my pay grade have to deal with.
“The other is the individuals in this room paying for their medications. Honestly, where that’s most often a problem is with Medicare patients getting oral therapies. Nivo is easy for me. It’s always covered, because it’s an infusion. I don’t have to worry about it. Sunitinib? Poor Tara spends half of her time filling out paperwork because of patients’ doughnut hole.”
Michaelson was referring to the gap in Medicare coverage for oral medications, i.e. pills. And cancer treatments in pill form, such as sunitinib or Sutent are expensive, costing about $14,000 per month. At that point, Dr. Choueiri asked for the microphone.
“Dror and I agree on most things except on three things,” he said with a smile, in his distinctive Lebanese accent. “This topic, the Yankees and the Red Sox.”
There were chuckles and smiles in the audience.
“I think this is a big, big, big issue,” he said. “At the end of the day, on a personal level, it’s how much you pay. But on a country level, this is a huge problem. This is at the core of our country, capitalism versus other innovation versus other…where do you draw the line? Why a drug should cost, for infusion, $20,000, $25,000? But, you have other people saying ‘Look, you cannot put a value like some countries try to do.’”
It seemed like Dr. Choueiri was thinking through the issues as he answered the question.
“You cannot put value on a human life,” he said. “I see patients that say, ‘I want to make it to my grandson’s birth in six months, in three months, I don’t care.’ But, it is expensive; we do have pharmaceutical companies and they actually employ their people and have to pay them. Still, putting everything together and addressing it from every angle — scientific angle, innovation angle, capitalism angle, nationalism angle – the price is probably too high. There are some countries that want these drugs, that are able, sometimes, to get these drugs at a cheaper rate.”
Choueiri didn’t offer any great solutions, but predicted that taxes in the United States would have to go up, unless there was movement on bringing drug prices down. And he reminded the audience of the human element.
“At the end of the day, people are living longer with these drugs,” he said. “We’re here for human beings, more than anything else.”
Panel member Dr. Kathleen Mahoney circled back to a point I had referred to when asking my question – at what point should patients stop taking these expensive immunotherapy treatments? That’s a question that can only be answered through research, Mahoney said, and those clinical trials are not easy to set up ethically – who wants to be in the study arm that gets taken off a drug to see whether it stops or keeps working? Mahoney said the duration of some cancer treatments is restricted by severe side effects.
“With high dose IL‑2 the reason that we only give it four weeks and then you don’t get it anymore, is because it’s too toxic,” she said. “It forces the issue of, ‘What’s the end point?’ The end point is that, for people who are healthy enough and want to try it, the goal is remission. The goal is, we hate to use the “cure” word in cancer, but whether you call it a cure, whether you call it remission, whether you call it time off of therapy, that’s an end point, that is, potentially, worthy of being its own end point in clinical trials.”
Michaelson had the last word on my question.
“One more thing, by the way,” he said. “I like to be positive about things. So, you don’t think it’s too big a problem, what percent of the healthcare budget is drug cost, in the US? Anybody know?”
The audience was silent as he looked to us for an answer.
“Under 10 percent,” he said. “Hospitalizations destroy the healthcare budget.
The cost ‑‑ if anybody spends a night in the ICU ‑‑ the real costs in this country are not, necessarily, drug costs, even though they’re very high, but relative to the whole healthcare budget, it’s just a very small piece. If you need Nivo, don’t worry about it. Go, get your Nivo, and the country will figure out another way to pay for it.”
I knew from interacting with other patients online and from my own reading that it wasn’t quite that simple. Cancer has an impact on many aspects of financial health, from employment to savings. The National Cancer Institute even has a name for the high cost of cancer care and its impact – financial toxicity. According to data collected by the NCI, a cancer patient’s risk of financial hardship becomes dangerously high. For example, working cancer patients, which I had been for more than three years, miss more than 22 more workdays each year than those without cancer, and many cancer patients report that cancer interfered with physical and mental tasks needed to perform a job well. Moving on to finances, the NCI noted that cancer patients were 2.7 times more likely to file for bankruptcy than those without cancer, and more than a third borrowed money from family and friends to help pay for treatment.
Later, in the Q and A session, there was a lull in the questions. I couldn’t help myself. I raised my hand – I am a former reporter. Dr. Choueiri nodded to me.
“Looking forward in the next year to five years, what are you most excited about?” I asked. “What holds the most promise?”
Dr. Choueiri said that despite a few recent negative findings, he continued to be excited about combining treatments – two immunotherapy agents for example, or one targeted therapy and one immunotherapy – to achieve better cancer-killing results.
He cautioned, though, that combination therapies could have dangerous and sometimes life threatening side effects.
“We have to proceed extremely, extremely carefully, because an immune response that goes completely unchecked can attack other organs,” he said. “I wouldn’t say it’s fatal, but it can stay and can delay the treatment for some time.”
Vaccines continue to hold great promise, Choueiri continued, though their successful application to cancer remains frustratingly elusive, for several reasons.
“There are new vaccines coming that seem very promising — the science is top notch,” he said. “The problems are in making the vaccine – that is a pain in the neck — and time. Can you wait a month, two, three, four months to infuse a sick patient? You need vaccine at this point. Also, you need fresh tissue, not frozen tissue. You need someone in the operating room to take the tissue, and that’s a problem too – you need to coordinate that. It’s not just the science, it’s getting everything together lined up.”
Despite those hurdles, Choueiri reminded the audience, as he does his patients, that fighting cancer is about keeping treatment options open and buying time. For decades there hadn’t been new approved treatments for kidney cancer other than HDIL-2, which only worked for a small percentage of patients. Then targeted therapies like Sutent came along. They shrunk tumors in many patients, but they hardly ever work forever. The immune therapy treatments approved and being tested over the past few years offered more options and for many patients bought more time.
And their development, Choueiri said, was thanks to Gordon Freeman, the unassuming immunologist I had met about a year earlier in his laboratory at Dana-Farber.
“I want to highlight here the effort of Gordon Freeman,” Choueiri said as he cued up a slide showing a T-cell. “There’s a lot of people talking about the immune checkpoint blocker, and which scientist did what. Hopefully at the end, if there is a Nobel Prize awarded for this, he’s on the list. Gordon showed that the interaction between PD‑1 and PD‑L1, where you see L1 it’s the ligand, so the ligand goes to the receptor and the whole pathway is activated or not. The result is a negative regulation of the immune system of lymphocyte activation.”
“We’re very proud of him,” Choueiri said. “It’s actually extremely humbling and I personally never imagined myself in this circle. It’s a lot of hard work but we can do it.”
Choueiri smiled, looked at the audience and turned serious.
“Part of why we can it we can do it is we have you as partners — every one of you and your families,” he said. “Let’s not forget that you are all partners in this. Thank you.”
The small but enthusiastic audience applauded and stood up to leave. After saying goodbye to my table comrades, I set out for the walk to my car, wincing slightly with each step.