In spring of 2014, Peter Fortenbaugh noticed what appeared to be a tick that had bitten his lower calf. “It turned out not to be a tick, but it didn’t really go away,” he says.

The spot began to grow and bulge, and in October, Peter showed it to his primary care doctor, who referred him to a dermatologist to remove it. At the time, Peter recalls, it did not occur to him that the growth could be serious.

“I was actually very concerned about skin cancer because I spent a lot of time out in the sun sailing,” Peter says. “I put on a tremendous amount of sunscreen and protection, but never on my legs…I never connected the dots.”

However, a biopsy of the growth came back positive for melanoma. Peter, who lives in Palo Alto, California, with his wife and three children, immediately reached out to several doctors in the San Francisco Bay Area, and all had the same advice: “Take it out, take a biopsy.”

Peter had his primary tumor removed, but the cancer had spread to groin lymph nodes in the same leg, so those were removed, too. A PET scan showed no signs of cancer anywhere else in Peter’s body, so his diagnosis was stage IIIA melanoma. “Then the challenge became what to do next,” he says.

A drug known as interferon was the standard treatment option to stave off recurrence. But after careful research, Peter decided that interferon was no more likely to help him than a newer experimental treatment could. So he enrolled in a clinical trial testing whether a certain drug would improve patients’ responses to two cancer vaccines.

Peter participated in the trial from January to May of 2015, flying to Portland, Oregon, every week for treatment and testing. “I had gone in NED [with no evidence of disease], and I was still NED after,” he says. “I had no idea if the trial helped or not. I’ll never know.”

The confusion of cutting-edge treatment

In March of 2016, doctors found multiple tumors in the thigh of the same leg where the initial tumor had grown, raising Peter’s stage to IIIC. “Then I reached out to everybody and anybody I knew to figure out what I should do,” he says.

Peter spoke with leading melanoma experts all over the country in order to learn all he could about his treatment options. He wanted to understand the data so he could make a scientifically informed decision, but he ran into challenge after challenge, beginning with the redundant vocabulary of drug names.

“The craziest thing is that all these drugs have three names,” he says. “I would go talk to these doctors and they would throw out these three words interchangeably, and I’m sitting there in my chair completely dumbfounded.”

Peter began to keep track of drug names and organize all his notes in a Google doc, which helped, but he soon faced another obstacle: the data itself. It was impossible to compare some drugs with others because they had been tested differently in clinical trials. “Some of this is recurrent data, some of it is survival data. They’re measuring different things, so it’s totally apples and oranges.”

Instead, Peter found that many oncologists were making recommendations based on anecdotes or simply suggesting whatever treatment they had learned about most recently. Or, they would recommend that Peter enroll in clinical trials they ran themselves.

“They’re not going to do anything they know is bad for me,” Peter says, “but in the face of uncertainty, they’re going to lean towards their agenda.”

The perils of treatment without monitoring

After weighing the available data, and considering that he was relatively young and healthy, Peter decided he wanted to take a somewhat aggressive combination of three types of drugs: a BRAF inhibitor, a MEK inhibitor, and a PD-1 inhibitor. He also considered a combination of ipilimumab (Yervoy) and nivolumab (Opdivo), but this duo is considered to be more toxic and not necessarily more effective.

Local doctors were only willing to prescribe either a BRAF and MEK inhibitor combo or a PD-1 inhibitor on its own, so Peter searched elsewhere. No clinical trials offered the exact treatment he wanted, but he found one trial site in Los Angeles that was testing a similar combination: BRAF and MEK inhibitors plus a PD-L1 inhibitor. He decided to give it a try and launched into the frustrating, inefficient process of enrollment.

“I had to keep flying down, and I’m trying to get back to get to my kid’s sporting event or back to work, and they just make you bounce around,” Peter says. “You’ve got to drive 20 minutes to get your x-ray done here and 30 minutes to get your eyes checked there, and it was just a super, super stressful situation.”

At one point, Peter asked the lead doctor of the trial to discuss the existing data on PD-L1 inhibitors versus PD-1 inhibitors. “He just looked at me like I had four heads,” Peter says. “The idea of a patient asking for data was completely foreign to him.”

On Peter’s fourth trip to LA, his doctor told him he’d forgotten that Peter would need a tuberculosis test before starting treatment, which would result in a three-day delay and another flight there and back. Instead, the doctor offered to side step the trial and simply give Peter the three drugs. “I was thrilled to not have to jump through all the trial hoops,” Peter says.

Peter flew back to Palo Alto and began taking vemurafenib (Zelboraf) and cobimetinib (Cotellic) in May of 2016, with plans to add the PD-L1 inhibitor after two months. However, after just two weeks, “things got squirrely.” He began experiencing a variety of severe side effects, including chills, shortness of breath, headaches, joint pain, fatigue, and sunburn.

After being hospitalized for severe swelling in his legs, Peter spoke with a local Bay Area doctor, a family friend, who was shocked to hear that he had been instructed to take the two drugs without any monitoring. “It turns out the reactions I had are all—I wouldn’t say normal—but they’re not unexpected; they happen with around 25 percent of patients.”

Peter stopped taking Zelboraf and Cotellic, and his body recovered. Doctors advised him not to be such a “cowboy” who goes off to do things on his own, but to find someone local who could treat and monitor him carefully. As for the doctor in LA, “he still has never called to follow up. I never talked to him since.”

What comes next?

Peter’s local doctor had previously refused to prescribe the three-drug treatment, but now he agreed to do so. To avoid the severe reactions he experienced with Zelboraf and Cotellic, Peter switched to the more-or-less clinically equivalent duo of dabrafenib (Tafinlar) and trametinib (Mekinist).

In June of 2016, he started the drugs at 50 percent of the standard dosage and worked his way up to 70 percent, and then 80. However, the higher dosage caused severe chills so he settled back down to 70 percent. In August, he added a third drug, the PD-1 inhibitor pembrolizumab (Keytruda). He remains on this three-drug combination today.

“Now I’ve had two PET scans and I’ve come back clean again,” Peter says. “The question then is what do I do? And no one knows.”

Peter wonders how long he should keep taking each of the three drugs and what to do next, besides continued monitoring via PET scans and regular skin check ups.

He is still in touch with melanoma experts, but in the absence of clear data, they are giving him conflicting advice. While everyone agrees he should stay on Keytruda for at least a year or two, one doctor recommends that he stop taking Tafinlar and Mekinist, while another advises that he take them as long as possible.

“For now, I’ll keep taking all three, but I don’t know if that’s the right decision because these drugs must be doing bad things to my body,” Peter says. “I can handle the compromised lifestyle. I don’t like it, but I’ll do what I have to do.”

Meanwhile, he has reached out to Cancer Commons to share his story and data in the hopes that they might prove helpful to other patients in similar situations.

“I’m very fortunate in my job where I can help people who are really struggling,” says Peter, who heads up the Boys and Girls Clubs of the Peninsula. His organization provides after-school and summer programs for children from low-income households. “That helps me keep perspective all the time. Helping others is the best way to help yourself.”