Woodbury pediatrician bakes her way into Lustgarten Foundation's fight against pancreatic cancer

The sweet treats Lynn Cetin routinely bakes in her Woodbury home and puts on sale in her office come "from a box," but are part of a Long Island foundation's broader effort aimed at raising money and promoting vigilance in the battle against pancreatic cancer.

Cetin’s father, Avedis Cetin, died of pancreatic cancer in 1986, just four months after his diagnosis. He was 56, and she was 16. Lynn Cetin would eventually become a pediatrician, following both her father and mother, both physicians, into medicine.

Selling cupcakes and brownies is Cetin's unique way to support the Lustgarten Foundation in Uniondale in its global fight against the disease that claimed her father. The nonprofit’s signage is plastered throughout her Lake Success office, where, she added, many colleagues and even patients have been impacted by pancreatic cancer, a type of the disease historically referred to as a potential death sentence.

Giving what they can

"It makes people happy when they eat something sweet, and it makes people happy when they realize that they're not in this battle alone," Cetin, 57, told Newsday. "It’s purely a donation, and whatever they want to give, they give. And then we start the conversation."

On Sunday, Cetin and about 25 colleagues who comprise the fundraising team of ProHEALTH Pediatrics plan to gather at Jones Beach State Park for the Lustgarten Foundation’s 26th Annual Long Island Walk. The organization’s flagship event, where most attendees are clad in purple — the awareness color for pancreatic cancer — funds research into early detection methods and treatment options.

Dire numbers

The American Cancer Society projects more than 67,000 new cases of cancer of the pancreas will be diagnosed, and more than 52,000 patients will die nationwide by year’s end. The five-year survival rate for the disease that rarely reveals symptoms before it's too late to operate is 13%, the lowest of all types the national cancer society tracks.

Last year’s Long Island walk drew 3,000 participants who raised around $1 million combined, Lustgarten CEO Linda Tantawi told Newsday. She expects a similar turnout and impact this year.

"People fundraise because they’ve lost someone in their family, and they don't want any other family to have to go through this themselves," Tantawi said. "They want the patients to have better options than their family members had."

Among those options is daraxonrasib, a drug the U.S. Food and Drug Administration approved in August. While older chemotherapy drugs try "to kill the cells," daraxonrasib "specifically goes after the mechanism that caused the cells to become cancerous in the first place," Andrew Rakeman, Lustgarten’s vice president of research, told Newsday. That mechanism is the KRAS mutation of the RAS family of genes. Those mutations promote cellular growth in more than 90% of pancreatic cancer cases and have long been considered "undruggable."

A study funded by Revolution Medicines, the pharmaceutical research firm that developed daraxonrasib, found that patients using it nearly doubled their survival after diagnosis — to just 13.2 months — compared to patients receiving chemotherapy, The Associated Press has reported.

A transformational drug

Years before this summer’s milestone FDA approval, Lustgarten funded the research of Harvard chemical biologist Gregory Verdine, "who was developing the chemistry" that would make it possible to target KRAS mutations, Rakeman said. That work, he added, "led to the discovery of a unique chemical approach that became the basis for daraxonrasib."

"This drug or other drugs that target RAS will be part of cures for pancreas cancer or will be part of treatment regimens that allow patients to live longer and ultimately transform this to a curable or chronic disease," Rakeman said.

Lustgarten must now help scientists understand why patients develop a resistance to daraxonrasib after only a few months, Tantawi and Rakeman said. The nonprofit will fund research into whether the drug will remain effective longer when provided in concert with other treatments.

"Finally there is something that we know will work, but we also know that the drug eventually stops working," Tantawi said. "So it’s not a cure, but it’s still exciting because we’re extending life for patients."

Lustgarten funds an "ecosystem" that fosters "high risk, high reward" research through facilities including the Cold Spring Harbor Laboratory Cancer Center, Johns Hopkins Medicine and the Dana-Farber Cancer Institute, Tantawi said. They are currently funding 15 active clinical trials nationwide.

Regardless of whether those trials lead to breakthroughs, Lustgarten’s work has made a tangible difference. Cetin had only four months with her father after his diagnosis. She said her best friend, with whom she chairs Lustgarten Foundation’s annual San Antonio Walk, got to spend nine months with her father after his diagnosis. That was in 2017, and she said Lustgarten’s bolstering of awareness, community and research was to thank for the extra time and support.

"My friends' experience was that there was more medication, there was a lot more information out there, and she had heard about Lustgarten from me all these years," Cetin said. "There was nothing like that back in the day. ... That's why we fundraise."