Dr. Robert Gotlin

When the Doctor Becomes the Patient

By Joe Barone

Dr. Robert GotlinFor 29 years, Robert Gotlin operated a practice in New York City specializing in musculoskeletal medicine, sports injuries, and orthopedic rehabilitation. Treating two generations of families, Dr. Gotlin was considered their personal ‘family guy,’ not just the sports doc.

That’s what made closing up shop much more difficult.

Dr. Gotlin battled pancreatitis three years ago and had been diagnosed with a small cyst on his pancreas that doctors monitored closely. Then, at 61 years old, the doctor suffered from increased abdominal pain and knew something wasn’t right. That’s when he decided to get a CT scan. His greatest fear came to fruition in March 2020; a tumor was found on his pancreas.

“My first thoughts were: how can this be?” 

This wasn’t part of the plan he laid out.

“My plans were to slow down and retire at around 62,” the born and bred New Yorker said. “[I wanted to] travel, be involved in the community and in philanthropy, and volunteer.”

On most days, Gotlin worked between the hours of 5:30 a.m. and 10 p.m., treating patients ranging from the average New Yorker to the professional athlete.

Now, Gotlin scans his Memorial Sloan Kettering Cancer Center treatment portal to find out when his next chemotherapy cocktail will be. He admits to feeling like a pin cushion, getting poked and prodded with needles. But he knows this is part of the process. Although challenging, Gotlin has come to terms with the disease and is ready for the fight of his life.

“Once I got diagnosed with pancreatitis, I was subconsciously preparing myself for what might be,” Gotlin said, referring to his cancer diagnosis. “But when it finally came to be, it was life-altering.”

He knew the statistics. Pancreatitis is a risk factor for pancreatic cancer, increasing the risk of the disease by two to three times that of the general population. But even that came out of left field. There was no family history of the disease, and his genetic testing didn’t reveal any specific mutation. As an occasional social drinker with an average diet, doctors simply could not pinpoint how this came to be.

Battered but not beaten, Gotlin is approaching this the only way he knows how.

“You have two choices: to either fight it or not,” he said. “Even something as gloomy as pancreatic cancer has come such a long way, and with all the research going on, the hope is this will become a chronic disease. When you wake up every morning, if you want to have a down moment, take it. If you want to cry, cry. Realize there is always hope and optimism.”

As a patient, he knows it is easy to fall into a funk. The normally gung-ho Gotlin faced depression for the first time in his life after he went in for a Whipple procedure, a complicated surgery offering patients the best chance for long-term survival. Following a laparoscopy of his abdomen, doctors noticed his cancer had spread to a couple of lymph nodes—an indication of Stage IV disease.

“It was like a movie,” Gotlin remembered. “I was in the recovery bay and there was a window to the outside. My surgery was scheduled for 2:30 p.m. and I thought I’d be getting out late at night.”

“I opened my eyes and saw sunlight out of the window,” he added. “My immediate response was to quickly look at my stomach. It had the purple markings where the [incision] was going to be, but it wasn’t done. I knew right then—something was wrong.”

They regrouped together as a family after this devastating news. Gotlin is blessed to have the support from remarkable caregivers like his wife of 37 years, Marcia, his sons Matthew and Adam, daughter Samantha, and their loving significant others Briana, Lindsey, and David. Their support helps to keep him alive every day.

“Caretakers do bear the brunt of what’s going on more than the patient sometimes. My family has been so supportive,” he said. “My wife has been absolutely above and beyond as a caretaker. Her whole focus is me. It’s her personal quest. [I give her] all the credit in the world. Without her, there’s no way I would be here today,” he added.

These situations have the tendency of uprooting an entire family, in particular children, which Gotlin says “eats his heart out.” But his kids defy his requests to just live their lives and instead are constantly with him.

With the COVID-19 pandemic still in full throttle, Gotlin is taking the extra time at home to put life into a different perspective. He is doing things he normally never would’ve imagined—cooking with family, painting, and deciphering puzzles. His favorite part—getting ordained to marry his son and new daughter-in-law in a beautiful outdoor ceremony when their wedding plans changed due to the pandemic. Gotlin says it was the first time since his diagnosis where he smiled the entire day.

“It was well worth the time.”

His family keeps him busy and coaches him towards positivity. After coaching his children through the years, the shoe is now on the other foot.

“You have to realize what’s important—your family, close friends, and your health. Period,” he said. “Nothing else matters. Whether you make one dollar a week or one thousand a week, it doesn’t matter. Your family and health are what guides you the rest of your life.”

As for advice from one determined doctor to his fellow fighters, Gotlin left with this:

“Realize there’s always that next day that will get you to where you want to be. Be occupied. Be busy. They say you’re going to be tired. Tell them you’re not going to be tired. Don’t sit around.”

“Get up. Get out. Do things.”

Gotlin’s goal is to keep on the new chemotherapy regimen as best as he can. He plans to deal with the side effects and hopes his scans show the treatment is shrinking his tumor, so doctors reconsider the Whipple procedure. He looks at the research—including the research the Lustgarten Foundation is supporting—and stays optimistic, because breakthroughs happen all the time. His plan has shifted but make no mistake, this sports doctor doesn’t plan on striking out.

To learn more about pancreatic cancer treatment options, visit https://lustgarten.org/patient-journey/treatment-options/.

David Tuveson, M.D., Ph.D.

Fund The Fight

Fund The Fight

When you Fund The Fight against pancreatic cancer, you help keep life-changing research moving forward at an accelerated pace. You let everyone in the pancreatic cancer community—including patients, survivors, loved ones, doctors and researchers—know you’re committed to ensuring many more patients become long-term survivors and supporting the research to make that goal possible. Thanks to our GivingTuesday Donor Circle, every GivingTuesday gift made by midnight on December 1 will be matched, dollar for dollar, up to $125,000!* That means every dollar you donate becomes two, going twice as far to help pancreatic cancer patients and their families and advance innovative research. DONATE NOW and invite your friends and family to help Fund The Fight against pancreatic cancer by tagging us at @LustgartenFDN on social media and using #FundTheFight to help us find your posts. Remember, the Lustgarten Foundation is the only nonprofit that invests 100 percent of your DOUBLED donation directly to pancreatic cancer research, funding the fight for better treatments and an eventual cure.
Alex Trebek


Farewell, Alex Trebek

Jeopardy! host Alex Trebek Dies of Pancreatic Cancer

Alex Trebek

Like fans around the world, we were saddened to learn of the death today of Alex Trebek, 80, from pancreatic cancer. By openly sharing his cancer battle, Alex became a powerful voice in raising awareness of pancreatic cancer and providing hope for people affected by pancreatic cancer around the world. Our thoughts are with has family, friends and millions of fans who welcomed the long-time Jeopardy! host into their homes for 35 years. His final Jeopardy! is scheduled to air on Christmas Day.

Last November, approximately six months after first publicly sharing his diagnosis, Alex filmed a public service announcement (PSA) for the World Pancreatic Cancer Day. November is Pancreatic Cancer Awareness Month, which coincided with the 2019 Jeopardy! Tournament of Champions.

Throughout the two-week tournament, Alex and players wore purple ribbons to honor Alex’s cancer battle and to memorialize Tournament of Champions qualifier and Teachers Tournament winner Larry Martin, who died of pancreatic cancer earlier in the year. But it was College Champ Dhruv Guar, who’s heartfelt Final Jeopardy! answer “We love you, Alex.” caused the beloved Jeopardy! host to choke up. The moment went viral and #WeLoveYouAlex became a viral fundraiser for the Foundation, bringing in more than $100,000. We caught up with Dhruv again back in July, when Alex’s memoir “The Answer Is…Reflections on My Life,” was released.

Each year, more than 45,000 Americans and 5,300 Canadians die of pancreatic cancer, including Alex Trebek, SCOTUS Justice Ruth Bader Ginsburg and Rep. John Lewis. World Pancreatic Cancer Day is Thursday, Nov. 19. We invite you to honor Alex, Ruth Bader Ginsburg, John Lewis and all of the other women and men we have lost to pancreatic cancer by wearing purple, sharing your story and telling us what this year’s theme: #ItsAboutTime means to you.

We invite you to honor Alex, Ruth Bader Ginsburg, John Lewis and all of the other women and men we have lost to pancreatic cancer by wearing purple, sharing your story and telling us what this year’s theme: #ItsAboutTime means to you, or donating in memory of Trebek.

Lustgarten Foundation Chief Scientist on death of Alex Trebek

Nerves keep pancreatic cancer cells from starving

Pancreatic cancer cells avert starvation by signaling to nerves, which grow into dense tumors and secrete nutrients. This is the finding of a study with experiments in cancer cells, mice, and human tissue samples published online November 2 in Cell. The study addresses pancreatic ductal adenocarcinoma (PDAC), the deadliest cancer of the pancreas with a five-year survival rate below 10 percent. Such tumors encourage the growth of dense tissue that presses on blood vessels, reducing the supply of blood-borne nutrients like serine. This amino acid is used as a building block for proteins, and is required for cancer cells to multiply. Led by researchers from NYU Grossman School of Medicine, the Department of Radiation Oncology at NYU Langone Health, and Perlmutter Cancer Center, the new study found that starving pancreatic cancer cells secrete a protein called nerve growth factor, which sends signals to extensions of nerve cells, instructing them to grow deeply into tumors. The researchers found further that such extensions, called axons, secrete serine, which rescues pancreatic cancer cells from starvation and restores their growth.

Pancreatic Cancer Awareness Month

Join us all month long as we share information and awareness activities across our social media platforms and work together to increase awareness of pancreatic cancerGenerating awareness is critical to raising vital funds for research – research that will lead to more treatment options for patients. The Lustgarten Foundation is working tirelessly to improve patients’ outcomes by funding the most promising research on early detection, new treatments and personalized medicine. We have made great strides, but with your support this month, we can accomplish even more!

State Capitol goes purple Sunday to raise awareness about pancreatic cancer

South Dakota’s State Capitol turns purple Sunday (Nov. 1) to honor those who have died from, as well as those who have survived, pancreatic cancer. The seventh annual Light the Capitol Purple for Pancreatic Cancer Awareness ceremony starts at 3pm CT in the Capitol Rotunda in Pierre. Organizer John Moisan of Fort Pierre is a 6 year survivor of pancreatic cancer. November is Pancreatic Cancer Awareness Month and Moisan’s goal is to be sure as many people as possible are award of the symptoms. Dr. Jonathan Bleeker of the Sanford Cancer Center is the keynote speaker. Pierre physician Dr. Tom Huber is the master of ceremonies. Music is provided by Jim Szana and Moriah Gross.

Testing drugs within a tumor may combat pancreatic cancer drug resistance, ‘time machine’ suggests

Many patients with pancreatic cancer have only about a 10% chance of survival within five years of their diagnosis because they tend to become resistant to chemotherapy, past studies have indicated. A “time machine” that Purdue University engineers designed to observe pancreatic cancer behavior over time suggests a new drug testing approach that could help scientists better catch resistance. The researchers found that testing potential drugs on multiple tumor cell subtypes – rather than on just one cell subtype – can reveal drug resistance that may occur due to how different cancer subtypes interact with each other.
Purdue engineers built a “time machine,” or microfluidic pancreatic tumor device, that simulates tumor growth over time. (Purdue University photo/Jared Pike)
The study was recently published in the Royal Society of Chemistry journal Lab on a Chip. “The drug discovery and screening process has been using one cancer cell subtype and studying how it interacts with neighboring non-cancer cells, but this may overestimate the efficacy of the drug,” said Bumsoo Han, a Purdue professor of mechanical engineering and program leader of the Purdue Center for Cancer Research. Han has a courtesy appointment in biomedical engineering.

PC Research in the time of COVID-19

By Caitlin Kelly – October 22, 2020

Checking in With Our Dedicated Labs

As the COVID pandemic began to hit hard earlier this year, researchers working on pancreatic cancer research for the Lustgarten Foundation scrambled to make sense of how to continue their life-saving research. The four Lustgarten Foundation dedicated pancreatic cancer labsCold Spring Harbor Laboratory (CSHL), in Long Island, New York; Johns Hopkins, in Baltimore; MIT in Cambridge, Massachusetts and the Dana-Farber Cancer Institute in Boston—all suddenly shifted staff, resources and planning to stay safe and keep researching.

“We worked day and night to move into a new lab and have split our team into shifts,” said Dennis Plenker, a research investigator with CSHL. Today, the lab has found its new rhythm, he said. “We all come in on the same days, masked. In the new space, we can really spread out. Here we have a lot more space. We all feel safe.”

“What we’re trying to do is grow a patient’s cancer in a dish,” he explained. “Ten years ago, it was grown on plastic in dishes filled with red liquid, like you see in the movies. But today we’re working on an organoid, a 3D model of cells that have a structure. The beauty of this is that it’s very efficient so we hope to do this in real time for a patient, to tell a physician how to treat them, in a sort of personalized medicine. What we think, and what we’re seeing, much more closely resembles the tumor’s biology.”

These organoids—what he calls “a patient in a dish”—will allow physicians much quicker decision-making about which drugs are likely to be most effective, rather than immediately going to first-line treatment, he said.

Dr. Brian Wolpin, an oncologist who treats cancer patients, heads a staff of 14 at his clinic at Harvard, seven in the “wet lab” doing traditional lab work with cells, experimental models and patient samples  and seven in the “dry lab” working with data. “The lab had to close for a couple of months, and no one was allowed in, so we worked from home analyzing data,” he said. Like so many of us, the team also held a lot of Zoom meetings.

“We were doing more reading and writing since the wet lab had to be closed down. Today, we have a schedule and people can be quite productive,” he said. Because his lab is “really linked strongly to the clinic, all biopsies and blood draws were stopped, and clinical trials paused for three to four months.” But “in the long run, [the shutdown] will have had a pretty minor effect” he added.

His lab has two main areas of focus, creating personalized medicines and better understanding who’s at risk of developing pancreatic cancer. The ongoing challenge is that pancreatic cancer cells are initially so few and difficult to detect, so “how do you narrow down those patients who need scans and further evaluation?” Then, “how do you best use those scans for diagnosis rather than waiting for a large tumor?” Unlike other kinds of cancer, he added, “there’s no dominant risk factor, no one thing that’s a main risk. What we’re learning is that pancreatic cancer goes from a very small tumor we can’t even see but gets much larger very quickly. That gives us a narrow window” in which to start effective treatment.

So Dr. Wolpin’s work also means looking backward, when possible, at patient’s CT scans for the five years before a pancreatic cancer diagnosis. ”We’re looking for changes that predate the tumor.” In mouse models, some lose fat tissue and skeletal muscle a year or even 18 months before the disease fully presents, he said.

For Dr. Bert Vogelstein, the pandemic bore truly global implications. His lab at Johns Hopkins Cancer Center in Baltimore is working on CancerSEEK, a blood test able to detect the early presence of pancreatic and seven other types of cancer, which depends upon receiving blood samples safely, reliably and promptly from a team in Melbourne, Australia—a distance of 10,201 miles. Something of a logistical challenge! When his lab closed, those bright green plastic boxes filled with precious cargo had to be delivered to a staffer’s home address each week. Dr. Vogelstein is working with Dr. Peter Gibbs and Jeanne Tie of The Walter and Eliza Hall Institute of Medical Research.

“We’re the only ones who can analyze the blood,” Dr. Vogelstein explained. They’re part of a double-blinded controlled study involving 10 to 12 institutions around the Pacific basin, he said. “We hope in a year or two we can have patients treated on the basis of their blood tests.”

His research focuses on three mutations “that occur over a relatively long period of time” finally resulting in pancreatic cancer. “It takes years for that first mutation to occur and to grow abnormally, but even with one million cells, it can’t be detected and one of those will start a second mutation.” And even with 10 million cells, “it’s still not clinically detectable. The problem is the third mutation. So the challenge is to develop tests that get it early as we now can do with colon and breast cancer,” he said. (Dr. Vogelstein’s lab developed a widely used, non-invasive colon cancer detection method, Cologuard.)

“What we’re looking for is evidence of mutations of cancer in the bloodstream, a few molecules in a sea of blood.” The sooner pancreatic cancer is found, the better chance a patient has of being cured, he said. “We’re trying to convince pharmaceutical companies to support this research because it will make their drugs work better. Suppose you could try a drug because you could do a blood test and detect pancreatic cancer before it appears on CT scans and detects symptoms.”

And at MIT, the restrictions imposed suddenly by the pandemic actually produced a surprising and wholly unexpected benefit, said Dr. William A. Freed-Pastor. “We made some really exciting progress,” he said, by working with a computational biologist, someone well-versed in biology and also computer science. “We created a computational pipeline and studied different aspects of the disease that haven’t been studied before. We never had the time to do this pre-COVID.”

Since “we were all stuck at home, we could collaborate by Zoom because the normal limiting thing for us is time. Our bandwidth is normally so stretched that adding anything new like this would have been difficult. Now that model is built and is running data. We’ll be using it for an exploratory analysis for 58 patients in a potential upcoming trial.”

Dr. Freed-Pastor, heartened by the tremendous collaboration and urgency that COVID has added to everyone’s workload, said: “When the need is so pressing and so in front of you—as COVID has been this year—the goal is way bigger than any of us. That mindset? I hope we can keep it up!”

New Fellowships Honor Icons of Civil & Gender Rights

PROGRAM INFORMATION Each year, more than 45,000 Americans are lost to pancreatic cancer—parents, grandparents, siblings, children, friends and other beloved members of our communities. And because pancreatic cancer does not discriminate, it also claims the lives of national figures whose loss is felt not only by their immediate family members and friends but by the entire country and even around the world. Unfortunately, 2020 saw the loss of two such figures to pancreatic cancer: Civil Rights icon and 17-term Georgia Congressman John Lewis on Friday, July 17 and Equal Rights champion and longtime U.S. Supreme Court Justice Ruth Bader Ginsburg on Friday, Sept. 18.

Ongoing Studies Could Modify the Script in Metastatic Pancreatic Cancer

Clinical trials should not be viewed as a last resort for patients with metastatic pancreatic cancer, explained Allyson Ocean, MD, who added that even frontline standards of care should be considered after exhausting all available study options. “There are plenty of clinical trials available for your patients. Clinical trials should always be the first consideration for patients with metastatic pancreatic cancer because that’s the only way we’re going to really move the bar in this disease,” said Ocean. To that end, Ocean cited the phase 3 NAPOLI-3 trial (NCT04083235), in which patients with previously untreated metastatic pancreatic cancer will be randomized to liposomal irinotecan (Onivyde; nal-IRI) plus 5-fluorouracil (5-FU)/leucovorin and oxaliplatin (NALIRIFOX) versus the combination of gemcitabine and nab-paclitaxel (Abraxane).

Get Involved Today

Get inspired and connect with patients, survivors and loved ones who are all on the same journey.

Back to Top