Lustgarten marks 25 years of gains in pancreatic cancer research

The phone call came with the two-word verdict Eric Egelman feared most: pancreatic cancer.

This was August 2023 — and all Egelman could think of were the two other words pounding in his brain: death sentence.

Four years before, his mother had been diagnosed with the disease.

She was dead within six weeks.

So, straight off the phone Egelman sat alone for hours in the bedroom of his Bay Shore home, contemplating how he’d break the news to his son, Matthew, to his brother, Glenn, and to his longtime girlfriend, Susan Sattler.

“I thought about my life insurance and about my will,” he said last week. “I just wanted to be alone to absorb it all.”

Two years later, Egelman, 63, is in remission, one of the ever-growing number of pancreatic cancer patients now defying the odds.

That’s due in great part to Long Island being Ground Zero in the battle against a cancer once thought rare and incurable. It’s due to the efforts of the leading fundraiser in the world in the fight against pancreatic cancer: the Uniondale-based Lustgarten Foundation.

Since 1998, the foundation has led what its website describes as “a unique, collaborative, science-focused strategy” geared to “high-risk, high-reward research” that has accelerated and expanded “life-saving treatment options” in a field once thought hopeless. It has invested more than $301 million to fund those efforts — becoming the driving force behind every major advancement in the field.

This weekend, the Lustgarten Foundation is to host its 25th Annual Long Island Walk at Jones Beach — one of 23 walks it will host this year across the United States to raise funding and awareness in the ongoing fight to transform pancreatic cancer into a curable disease.

As of last week, the Long Island Walk had registered more than 1,000 participants and raised more than $550,000 from 2,800 donors.

“Back when the foundation started, if somebody received a diagnosis of pancreatic cancer, usually the physician told the patient simply to get their affairs in order. Most patients didn’t make it one year,” said Dr. David Tuveson, director of the Cold Spring Harbor Laboratory Cancer Center and Lustgarten chief scientist. “As a young doctor I was told: ‘You’re going to be miserable, because all you’re going to do is watch your patients pass away. . . . Seek another field.’

“Now?” he said. “I’m hoping to put myself out of work.”

‘SUCH A FIGHTER’

Lustgarten Foundation board chairman Andrew Lustgarten was barely into his 20s and his sister and fellow board member Jessica Lustgarten Courtemanche still in her teens when their father, Marc Lustgarten, got the devastating diagnosis that he had pancreatic cancer in 1998.

The five-year survival rate for the disease was 5%.

“My father was such a fighter,” Andrew Lustgarten, 47, said in an interview last month. “Rather than focus on statistics, he went to war.”

Marc Lustgarten, then chairman of Cablevision Systems Corp. and Madison Square Garden, had one ace going for him: the respect and admiration of the late Cablevision founder Charles F. Dolan, father of Madison Square Garden executive chairman and CEO James L. Dolan and Newsday owner Patrick Dolan. The elder Dolan donated $10 million to establish the Lustgarten Foundation for Pancreatic Cancer Research in an effort to help save his friend and find a cure.

"“Dad was passionate about the lifesaving work of the Lustgarten Foundation,” Patrick Dolan said in a statement. “He rarely missed a fund raising walk and was proud to help with a cause that honored his cherished friend Marc, who helped him create a visionary company that gave jobs to thousands of Long Islanders.”

The problem was that pancreatic cancer was pretty much an orphan disease — considered rare and unbeatable.

“When Lustgarten was founded, it was hard to give away the money because no one was doing the work,” said Linda Tantawi, the foundation’s CEO. The federal government was barely funding research, she said, and few medical professionals were in the field. “We had to start at the very beginning,” she said. “There was almost no one with even a basic understanding of the disease. . . . It was like figuring out how to put a man on the moon.”

The year Marc Lustgarten was diagnosed, the National Institutes of Health allocated $1.61 billion for AIDS research and $17 million for pancreatic cancer research. That translated to about $39,000 annually per patient killed by AIDS and, just $304 per patient lost to pancreatic cancer.

The Lustgarten Foundation vowed to change that — and, it did.

None of it was enough to save Marc Lustgarten. He died in 1999, about 16 months after being diagnosed. He was 52.

“He started the war, and he fought it to the last minute,” Andrew Lustgarten said. “But, just because he wasn’t able to win that war doesn’t mean we’re not able to.”

DIFFICULT TO DETECT

One of the most daunting problems faced by pancreatic cancer patients is the difficulty detecting the disease.

Symptoms vary greatly by patient; most doctors lack familiarity and screening tests have traditionally been unreliable.

Making matters worse, the pancreas is located deep in the abdomen, behind the spleen, liver and stomach, and diagnosis often comes too late.

Suffolk County Sheriff Errol D. Toulon Jr., a longterm pancreatic cancer survivor and Lustgarten advocate, said he was diagnosed by accident.

Toulon was in remission with Hodgkin’s lymphoma when his oncologist saw a troubling sign on his annual PET — Positron Emission Tomography — scan. She ordered him to the hospital that night and further testing confirmed the worst: pancreatic cancer.

“It was very surreal,” recalled Toulon, a father of two. “With lymphoma I thought I wasn’t going to see my boys graduate grammar school — and pancreatic, it was a million times worse. . . . The night before my surgery I went through my life insurance policies and picked out what clothes I wanted to be buried in. I didn’t think I’d even survive the surgery.”

Toulon, a Democrat first elected in 2017, had Whipple surgery. The complicated, multifaceted operation took more than 10 hours to remove the head of his pancreas, as well as his gall bladder, part of his stomach and part of his small intestine.

The complications, including inflammation of the membrane lining the belly known as peritonitis, staph infections and a post-operative lung collapse, almost killed him.

That was 2002. Toulon is now 63, his sons are 38 and 36. He has two grandchildren and last week played ice hockey.

“Back when I was diagnosed, when people heard pancreatic cancer, friends didn’t know how to deal with it — and they really didn’t know how to help,” he said. “A lot of people don’t understand the impact of what the Lustgarten Foundation does for patients and for their families. I didn’t have that support when I was diagnosed.”

The foundation helps patients and families facing high out-of-pocket medical costs and features a copay assistance program. It also provides travel and housing services, patient airlift services and connects patients and their families to more than 200 nonprofit organizations providing lodging, support services and more.

“That’s why,” Toulon said, “I’m an active supporter of the Foundation.”

TRAILBLAZING RESEARCH

It might sound strange, but experts agree the biggest contribution the Lustgarten Foundation has made in the fight against pancreatic cancer is providing researchers the ability to fail — and to do so quickly.

What that means, Tuveson and Tantawi said, is it allows researchers to pursue trailblazing treatments, test them in a wide range of clinical trials and quickly move through the protocols.

“This is a super exciting time in the fight against pancreatic cancer,” said Dr. Matthew Weiss, Northwell Cancer Institute deputy physician in chief and director of surgical oncology. “We have significant developments in the works — and, Lustgarten has been the biggest part of this.”

There’s a pipeline of new drugs targeting pancreatic cancer. There’s been amazing progress, Tuveson and Weiss said, in detecting the KRAS — Kirsten Rat Sarcoma — mutations that play a crucial role in the development and progression of the cancer. Identifying the mutation is now allowing scientists to develop specific KRAS inhibitors that target mutations in tumors on a patient-specific basis. Add to that developments in AI robotic surgeries and MRNA (messenger RNA) vaccines and, Weiss said, “I truly believe we’re on the cusp of what’s possible.”

The American Cancer Society estimates about 67,440 patients in the United States — 34,950 men, 32,490 women — will be diagnosed with pancreatic cancer in 2025. Worldwide, the estimate is more than 450,000. And, while the five-year survival rate for pancreatic cancer is still just about 12%-13%, it’s those developments that give researchers hope.

After all, Tantawi said, when Lustgarten was founded the five-year survival rate for metastatic breast cancer was about 50%. Now, for all stages it’s 91% — and for early-stage detection it’s 99%.

“Why can’t that be pancreatic cancer?” Weiss said.

COLD SPRING HARBOR LAB

Lustgarten Foundation funding has led to a coordinated effort in developing world-leading research programs on Long Island.

Cold Spring Harbor Lab is a think tank where Tuveson has five investigators from a staff of 55 working on pancreatic cancer research. That has benefited specialized care at Northwell Health and Stony Brook University Hospital, he said — and led to trend-setting treatments in the metro area, as well.

“I’d offer that any young person entering medicine who wants a great problem to base their career on should think about working on pancreatic cancer,” Tuveson said. “This is a chess game nobody has solved yet — but it once was considered a rare cancer, now it’s considered a common one, and once it seemed unsolvable and now we’re getting close.”

Tuveson was one of five co-chairs at the annual American Association for Cancer Research conference, Sept. 28 through Oct. 1 at the Westin Copley Place in Boston. More than 500 attendees discussed topics ranging from tumor evolution and therapeutic resistance to emerging immunotherapy strategies — that is, strategies aimed at improved outcomes for patients with pancreatic cancer.

TARGETED TREATMENT

Two years after being diagnosed, Eric Egelman just returned from a three-week European vacation with his girlfriend.

The two spent three days in Paris, with a stop in Luxembourg en route to a seven-day river cruise through Germany before visiting Prague, Krakow, Warsaw and Amsterdam.

That Egelman is now in remission is thanks, he said, to a number of groundbreaking treatments he has received in his care through Northwell — among them having chemotherapy and robotic surgery, followed by participation in a KRAS trial where doctors created a vaccine specifically targeting the genetic mutation causing his tumor.

Prior to being diagnosed, Egelman suddenly lost 30 pounds. During his battle with pancreatic cancer he’s been able to maintain weight — and has had few long-term side effects.

Better still, Egelman said, following his latest CT scan he received a verdict reduced to an acronym based on what he now calls “the best three letters in the alphabet.” NED: no evidence of disease. He is planning to participate in the Lustgarten walk on Sunday.

“I’m the beneficiary now of all that’s been done — treatments that weren’t available before, weren’t available for my mom,” he said. “It’s the reason it’s critical we continue that research and the reason I think, ‘Don’t just dismiss what can happen, don’t think there’s no hope’ — because, there is.”