Marc Mutz sits comfortably in the patient lounge of Seattle Cancer Care Alliance’s (SCCA) Clinical Trials Unit (CTU), receiving his 75th dose of nivolumab. One of the newest immunotherapy drugs available, it has helped keep his metastatic renal cell cancer in check for three years.
During this time, Marc has gotten to know the CTU staff on a first-name basis. They chat familiarly while the nurses and techs carefully document all of the key details about his infusion. Marc is in good spirits and totally healthy. Yet the cancer is still in his body — though reduced by 60 percent, thanks to the treatment. As Marc observes, “This is quite an adventure and it certainly takes over your life. But it’s interesting to be part of such a fascinating process.”
The spirit of adventure has always been the driving force in Marc’s life. At the age of 70, he is still a professional ski bum, having worked as an instructor in Sun Valley, Idaho, for the past 30 years. In the off-season, he’s held as many as seven part-time jobs simultaneously to make ends meet. These include intensely physical occupations such as owning a fishing boat in Alaska, working on oil pipelines in the U.S. and Saudi Arabia and maintaining Formula One racecars.
In April 2015, Marc was finishing his biggest winter as a ski instructor — 100 days on the hill. He recalls, “My right arm had been sore since December, but I’d had a total reconstruction of my shoulder, so I just thought it was something going wrong with the prosthesis.” A visit to an orthopedist resulted in X-rays that happened to include parts of his right lung. Suddenly, Marc had a cancer diagnosis. After full chest X-rays, the news got even worse: The tumors were metastatic and he needed a CAT scan to identify the origin of his cancer. Marc’s internist told him: “It’s renal cell cancer, and you’re going to SCCA on Monday.”
Marc’s SCCA team moved quickly to begin his treatment. He received radiation for the first month under the care of radiation oncologist Christine Fang, MD. He also checked in with SCCA’s Sarcoma Unit to see if they could help address the severe damage the cancer had done to the bone in his upper arm.
Now Marc moved on to the main event. Medical oncologist Scott Tykodi, MD, advised him to enter a clinical trial called Checkmate 214. The trial compared the efficacy of two of the newest immunotherapy drugs, nivolumab and ipilimumab, against sunitinib. This is significant because, over the last 10 years, sunitinib has been the most widely used FDA-approved treatment for metastatic renal cell carcinoma. The study enrolled about 1,000 patients in 184 cancer centers across 28 countries.
Marc was randomly selected for the investigational arm of the Phase 1 clinical trial. First, Marc received four doses intravenously of nivolumab and ipilimumab combined, at three-week intervals. Then he received nivolumab alone every two weeks — 75 doses in total.
Marc’s first treatment was in June 2015. At the beginning, he recalls experiencing fatigue that was so intense, he couldn’t stay awake for several days. But that wore off, and he hasn’t been bothered by any side effects since then. Remarkably, as of May 2018, Marc has never had to spend a single night in a hospital throughout his cancer treatment.
In the initial stage of the treatment, Marc got scans every six weeks, so Dr. Tykodi’s team could measure the size of the primary and the secondary tumors. “We just watched the tumors shrink over a three-month period,” says Marc.
The size of his tumors has remained fairly consistent since then, with the exception of minor fluctuations, both up and down, starting around September 2017. The Checkmate 214 trial officially closed that same month, a year earlier than expected, because the data showed better survival for the ipilimumab plus nivolumab combination compared to sunitinib. The study also collected patient-reported outcomes showing better quality-of-life scores and fewer overall side effects for the immunotherapy treatment versus sunitinib.
Dr. Tykodi puts this in context. “Marc’s experience highlights a very noteworthy trial,” he says. “It’s going to change clinical practice. This was the first time these immunotherapy drugs had been tested as initial therapy — frontline therapy for kidney cancer. The trial was strongly positive in favor of the immunotherapy drugs versus sunitinib. It demonstrated better success at managing the cancer, and it’s also better tolerated by patients with less overall side effects.”
He adds, “Marc is the perfect example. For the past two years, he’s basically had no side effects of any kind; his biggest problem was having to drive from Idaho to Seattle to get the therapy.”
Marc’s success was shared by many other patients: On April 16, 2018, the FDA approved the combination of ipilimumab and nivolumab as first-line treatment for patients with intermediate- and poor-risk advanced renal cell carcinoma.
Marc is understandably pleased with his own success and that of the trial. But he’s also a bit wistful, knowing that some of the patients in Checkmate 214 experienced a complete response. He brought up the topic with Dr. Tykodi, who told him that his case was “difficult to treat because metastases in bone are a poor prognostic feature for kidney cancer.”
“What’s our next move?” asked Marc, knowing there is no guarantee he will stay at 60 percent indefinitely. “If the nivolumab doesn’t continue to work, what’s plan B?”
He recalls Dr. Tykodi telling him, “Our strategy is for you to stay alive until something better than this treatment comes along. The longer you last, the better the chances are that the magic bullet might be found. And at the very least, the longer you’re here, it’s certain that more and better alternatives will become available.”
Today, Marc’s adventure continues, thanks in large part to his inspiring attitude. “I keep teaching skiing,” he says, “because none of my students know that I’m sick. Out on the hill, I can show them tricks that they would never have figured out for themselves. I can see the lights come on, and I know I’ve changed their lives for the better in just a few hours. It takes me away from this — the cancer, the clinic visits. I get reinforcement from teaching on the slopes and that keeps me going here in the clinic.”