A deadly cancer you probably haven’t heard of is on the rise. Now a pioneering HIV activist hopes to change that.

The 66-year-old health consultant has Merkel cell carcinoma, a rare skin cancer that is becoming more common in the United States and is about five times more lethal than the best-known skin cancer, melanoma.

Landers hopes to publicly document her illness, from the discovery of a harmless quarter-inch pink spot, smaller than a pinky fingernail, on her right cheek in the summer of 2020 to stage cancer late, can help others to recognize and act. quickly against aggressive disease.

“I was scared,” Landers confessed, as he recently told how he learned in early 2021 that his pink dot was Merkel and that it had already spread to his lymph nodes. Her dermatologist initially removed the small patch months earlier, but didn’t check for cancer until the spot reappeared in the fall of 2020.

This is a “classic” Merkel cell carcinoma—a bright pink, red, and purple smooth papule—on an unidentified patient. Manisha Thakuria, MD, Co-Director, Merkel Cell Carcinoma Center of Excellence/Dana-Farber, Brigham & Women’s Cancer Center

“When I discussed the diagnosis with various medical providers, most of them had never heard of Merkel,” said Landers, associate editor of the American Journal of Public Health and member of the state. Public Health Council.

Hall of Fame quarterback Terry Bradshaw The public disclosure last year that he was treated for cancer may have been the first time many had heard of Merkel cell carcinoma.

Yet a common virus, called Merkel cell polyomavirus, is thought to be involved in about 80 percent of cancer cases.

“If we took a cotton swab from your forehead right now, we’d probably find it on your skin … and yet we don’t know of any problems from the virus, except that one in 3,000 people during their lifetime will get this cancer from the virus,” said Dr. Paul Nghiem, Merkel’s specialist and clinical director of skin oncology at the Fred Hutchinson Cancer Center in Seattle.

The remaining 20 percent of cases are caused by long-term sun exposure. Scientists can distinguish tumors induced by sunlight from those fueled by the virus by scrutinizing DNA mutations in tumor cells.

About 3,200 new cases of Merkel are diagnosed each year in the United States, and the biggest risk factor is older age, Nghiem said. Most patients are over 65 years old.

Another one A major risk factor is a weak immune system, which affects patients like Landers with HIV, or those who have had an organ transplant. Patients with an autoimmune disease that require medication that suppresses their immune system, and people with chronic lymphocytic leukemia are also at greater risk.

Yet another puzzling part of the disease: more than 90 percent of all people who develop Merkel have no known immune deficiency.

This isn’t Landers’ first brush with cancer. His father, who was also fair-skinned, died at 55 of multiple myeloma, a cancer of the bone marrow. And Landers himself had several common basal cell carcinomas removed over the years, as well as early-stage melanoma, and a Burkitt lymphoma tumor on his vocal cords.

Stewart Landers practices yoga at home. A certified instructor, Landers says yoga, which she’s practiced since she was 17, has helped her health. Jessica Rinaldi/Globe Staff

But it was Merkel’s diagnosis, and the discovery that few people had ever heard of this type of cancer, that prompted her to send a candid e-mail about her experience to a small circle of friends and colleagues, including Boston’s health commissioner, Dr. Bisola Ojikutu, an infectious disease physician who calls Landers an early mentor.

“I wanted to look for the Merkel cell next and do my own research,” Ojikutu said. “He was extremely open and helpful.”

Landers helped shepherd Ojikutu through the HIV landscape, people, policy and programs, earlier in his career when he first worked at JSI, a global public health consulting organization in Boston. Ojikutu was a senior HIV clinical advisor in domestic and international projects.

They have been in touch. And when Mayor Kim Janey offered him the job of Boston public health commissioner in 2021, he again sought Landers’ advice. “He was one of the first people I had to get a sense of if I thought I’d be a good commissioner,” he said.

Landers, whose undergraduate degree was in urban planning, had planned to become an environmental lawyer. But the AIDS epidemic, which was on the rise when he graduated from law school in 1982, seemed more urgent. He brought back a core principle of city planning at the time – “nothing about us without us” – and introduced the concept to HIV/AIDS planning and services.

He started at Fenway Health, fresh out of law school, coordinating the staff, then moved to what would become the Boston Public Health Commission and took a position helping to assess the cost of treating HIV.

From there came a new role in the state health department in 1988 in the Office of HIV / AIDS, evaluating and then leading a behavioral health program for people newly diagnosed with HIV.

In 1991, he was director of policy and planning in the state’s HIV/AIDS office.

Former Massachusetts Public Health Commissioner John Auerbach, who has known Landers since they first worked at the state health department in the late 1980s, said Landers’ pioneering work to HIV/AIDS translates well into Merkel’s nascent awareness-raising mission.

“Before HIV, there was this elitist approach to research, where a small number of researchers would have a restrictive set of rules about enrolling people. [in clinical trials] and who could get in and who couldn’t, and it wasn’t always clear,” Auerbach said.

“Stewart has done an incredible job of developing a movement that would say there is a need for consumer-oriented clinical trials, where people have ready access to what’s happening across the country and in their communities,” he said.

Since 1994, Landers has continued to work on HIV/AIDS at the federal, state and local levels at JSI in Boston.

But the last two years have been challenging.

It was through surgery and radiation that kept Merkel’s progression at bay, with no evidence of cancer in a May 2021 scan. But then, a year later, another scan revealed tumors growing in his liver. She was prescribed Pembrolizumab (known as Keytruda) for her stage 4 disease and that seemed to work. But by the end of last November, the tumors had returned.

That’s when Landers hoped to enroll in a clinical trial testing two different drugs, but he said his HIV status disqualified him.

“When I asked if the drugs that are being studied in this clinical trial could be available on a compassionate use basis. I was told ‘no, there is no existing program for compassionate use,'” said Landers. ‘and an old HIV activist, I had to ask ‘Well, can we start one?’

It is that attitude that Dr. Ann Silk, Landers’ doctor and co-director of the Merkel Cell Carcinoma Center of Excellence at Dana-Farber Cancer Institute, finds remarkable.

“Being in a room with Stewart, I feel like I’m talking to an ally,” Silk said. “He is … interested in where the field is and what we are doing, not only to get the best result for himself, he is also interested in what the field is doing for Merkel cell carcinoma and how he can contribute.”

Landers now plans to bring his decades of experience in HIV/AIDS organizing to his public awareness campaign for Merkel. At Fenway Health, 38 years ago, he oversaw the organization’s first fundraiser to help with patient treatment. Perhaps a similar approach could help with Merkel?

Landers (right) posed for a portrait with her husband of 22 years, Jack Boyce. Jessica Rinaldi/Globe Staff

“More money needs to be raised to support research,” he said. “A lot more could be done with more money; it would move things faster.”

And it would give Merkel patients more treatment options.

Landers recently started two drugs, known as immunomodulators, which try to stimulate his body’s immune system to fight cancer. Recommended by Silk, the drugs are expensive: about $28,000 for one that must be taken 26 times in a year, and $64,000 for the other, given four times.

It’s unclear if their insurance company will cover them. For now, it’s paying for itself.

His most recent blood test and body scan suggest the medication is working. The test showed a dramatic reduction in the amount of tumor cells detected, while the scan indicated that two of the tumors on his liver had disappeared, but a large one remained. His doctors are considering radiation to deal with this tumor.

He was at this junction hopeful, but cautious first.

“The word retake now seems right,” Landers said. “I will learn not to be too high or too low. We just need to be able to find the things that help.”

Kay Lazar can be reached at kay.lazar@globe.com Follow her on Twitter @GlobeKayLazar.

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