Andrew Combes was early for his first appointment at Dana-Farber. He had traveled all the way from Tiny, Ontario, in Canada, and was eager to be seen to get a second opinion on his diagnosis of Merkel cell carcinoma, a rare and aggressive cancer.
To pass the time on this beautiful mid-October day, he meandered into the PMC Plaza, an outdoor area dedicated to the thousands of participants in the Pan Mass Challenge, an annual two-day bike ride across Massachusetts that raises funds to support cancer care and research at Dana-Farber, and has become both the Institute’s largest single donor and the most successful athletic fundraising event in the world.
The sight brought him to tears.
Combes had ridden the PMC in support of Dana-Farber for six years in a row two decades ago, and now, here he was, receiving care here.
“The Kleenex had to come out,” says Combes, a 72-year-old writer and cancer advocate. “It just brought me back to the great experiences I’ve had riding the PMC and seeing, oh, this is how important it is. That really got me.”
Combes was concerned that the care he was receiving in Canada wasn’t moving quickly enough for such an aggressive disease. When he discovered that Dana-Farber had a Merkel Cell Carcinoma Center of Excellence, he knew where he needed to go. He was the first patient to come to Dana-Farber through the International Patient Center, which had opened at the Institute a month earlier with the aim to provide highly coordinated care for international patients like Combes.
As part of the intake process, he sent the team at Dana-Farber photos of the tumor on his arm. He was so excited about Dana-Farber that he wore his 1999 PMC cycling shirt.
“I’ve still got most of them” he says. “They still fit!”
The long journey to diagnosis
Combes moved to Canada 20 years ago but is originally from the UK. While in the UK, in the late 1980s, his mother-in-law died suddenly of cancer at the age of 55. It rocked the family. It also set Combes on a lifelong path of cancer advocacy work.
Between 1998 and 2003, Combes lived in Vermont. During that time, he became an avid mountain biker. As a cyclist and cancer advocate in New England, he naturally got wind of the PMC.
“This was my first big fundraiser ride, and it was a blast,” says Combes. “It’s just such a family feel.”
Years later, living in Tiny – which is named for a dog, not for its size – he developed a lump on his arm. He spent the spring and summer of 2023 working to get a biopsy, diagnosis, and an appointment to discuss treatment.
“In the meantime, I’d already reached out to Dana-Farber,” he says.
When Combes came to Dana-Farber for his first visit, his first stop was the International Patient Center. The center had helped arrange his appointments with the treatment team, including Ann Silk, MD, Danielle Margalit, MD, Manisha Thakuria, MD, and Charles Yoon, MD, PhD. The center had also helped arranged appointments for a diagnostic PET/CT scan and facilitated other intake steps. When he arrived, they provided him with a tour of the campus and, importantly, a home-base full of friendly faces.
“It’s all so new, so having the center was very helpful,” says Combes. “You’ve got somewhere to go, a place to put your coat, to get a coffee, and to steal cookies.”
Merkel cell cancer (MCC) is an aggressive, fast-growing cancer. His team determined that his cancer was stage IIIB, an advanced stage. According to Silk, MCC comes back 60% of the time for patients at this stage.
“Doing everything you can to cure it the first time is a worthy investment,” says Silk.
Her team planned a combination of immunotherapy, surgery, and radiation therapy. While immunotherapy isn’t standard of care, there is a small study that showed a low risk of relapse when patients received two doses of nivolumab prior to surgery.
Progress advancing therapy takes years, says Silk, because the cancer is so rare that most studies include small numbers of patients. Silk’s team enrolls all patients who agree into their MCC Data Bank, which will enable them to accelerate progress in determining the best treatments for patients.
“Only places like Dana-Farber can do this kind of work because we have the volume of patients with this rare disease,” says Silk.
Combes opted in both for treatment and to participate in the MCC Data Bank at Dana-Farber. He returned home for a short visit to ready his house and life for a several-month stay in Boston.
“I knew halfway through my visit with Dr. Silk that Dana-Farber was where I wanted to be treated,” says Combes. “And it’s a good thing that I did.”
A novel approach to monitoring
Combes began treatment on Nov. 2 with his first infusion of nivolumab, an immune checkpoint inhibitor that clears the way for immune cells to recognize and attack cancer cells. He had a second infusion two weeks later. The tumor had shrunk substantially by the time he went into surgery two weeks after that. The area that was removed by surgery showed dramatic treatment effect from the immunotherapy, with only a few millimeters of residual cancer cells. Once the incision was healed, he received five weeks of radiation therapy.
By Dec. 15, he was “molecularly cleared,” says Silk, meaning that there were no signs of tumor DNA circulating in his blood (called ctDNA). “Achieving zero, like Andrew did, is associated with a good long-term prognosis,” she says.
Combes returned to Canada with a plan to have his ctDNA tested in three months, followed by a PET/CT scan three months later. Traditionally, patients are expected to come to a cancer center for a diagnostic PET scan every three months to determine if the cancer has come back. The blood test can be used to replace one of those PET scans, according to research recently published by Silk and colleagues.
“A negative ctDNA test today gives us confidence the cancer is not coming back in the next three months,” says Silk, who notes that this novel approach reduces the burden on the patient and reduces health care costs, though it does require additional coordination at the cancer center.
The blood test is currently available in the U.S., and Combes has secured the ability to receive it in Canada. The convenience is notable and he, ever the advocate, is working to make its use more accessible across Canada, especially in more remote regions.
The final hurdle
By February, Combes was back to riding his bike – in Canada, in late winter – and having a ball. Until mid-March, when he developed a cough. Within weeks, he was struggling to climb the stairs.
Local doctors in Toronto diagnosed a progressive condition called idiopathic pulmonary fibrosis, which has no cure. Combes was devastated.
“I’d beaten MCC, and now this?” Combes recalls thinking.
Prior to his first follow-up appointment at Dana-Farber in late May 2024, the International Patient Center convened a Zoom call for Combes’ care team. The call enables the team to review the case before the patient returns to Dana-Farber from their home country so that there isn’t wasted time or missed steps.
During the call, the team learned about his newly diagnosed lung condition. Later, the center’s coordinator told Combes that the news brought several people on the call to tears.
At the follow-up visit, Silk and the care team had good news. Combes was still clear of cancer, and they also believed his lung condition was caused by more than one factor. After a joint consultation with his care team in Toronto, he began a course of an anti-inflammatory drug. It helped immediately.
Combes still has a slight cough, but he’s riding again and getting better every day.
“I’m living again,” he says. “I’m busy as heck.”
Combes couldn’t ride the PMC in 2024, but you can bet he’ll be there next year.