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Magazines serving the communities of Northern Westchester

pancreatic cancer

Families Working Together Against Pancreatic Cancer

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Zabeen Mirza as a young girl with her dad Dr. Zobair Ahmed

Efforts Geared Toward Goals of Earlier Detection and Better Survival Odds

Chappaqua resident Zabeen Mirza was in middle school when she first heard the words “pancreatic cancer”.  It was a dramatic discovery–her healthy, active father, an anesthesiologist at Memorial Sloan Kettering, had suddenly keeled over in pain and was found lying on the floor. Less than six months later, and only 40 years old, he had succumbed to the devastating disease. 

“It was awful–just incomprehensible to know that my father was literally surrounded by the best and the brightest minds in oncology–and they were all helpless, with no answers or treatment,” said Mirza. “We felt such powerlessness, despite all the brilliance and access we had. And there was nowhere to turn for support.”

Ironically, the same year her father passed away, 1999, was the year the Pancreatic Cancer Action Network (PanCAN) was established. With a vision to create a world in which all patients with pancreatic cancer will thrive, the organization focuses on improving the lives of everyone impacted by pancreatic cancer by advancing scientific research, building community, sharing knowledge, and advocating for patients.

“If PanCAN existed while we were going through this with my dad I can’t imagine how the trajectory of my life would be different,” said Mirza, who is now an Event Experience Chair for PanCAN’s annual Purple Stride event, which will be held virtually this April with a goal or raising $290,000. “This organization is truly a lifeline to those battling this unrelenting disease and their families, right from the point of diagnosis. Even if your loved one is no longer with you, PanCAN is there for support.”

A pancreatic cancer diagnosis is devastating, with limited treatment options and a five year survival rate of only 10 percent. There are no early detection tests, no effective long-term treatments and, unless the cancer is surgically removed in its earliest stages, no chance for cure. 

The American Cancer Society’s estimates that, in 2021 alone, over 60,000 people will be diagnosed with pancreatic cancer, and nearly 50,000 will die of the disease. Accounting for about 3% of all cancers in the US and 7% of all cancer deaths, the biggest obstacles continue to be early detection and treatment.

Often referred to as a silent killer, symptoms are rarely noticeable in its early stages if they are present at all. They are often vague and can be easy to ignore, making it a challenge to recognize and diagnose. The pancreas is located deep in the abdomen, so tumors are rarely felt or found during a physical exam. Doctors may use a barrage of generalized tests to make a diagnosis but there is STILL no standard test to specifically diagnose pancreatic cancer, complicating matters even more. It is often diagnosed at an advanced stage because its symptoms (back or stomach pain, bloating, gas, new-onset diabetes) mimic other conditions. Some people carry genetic mutations, including BRCA, that put them at higher risk of developing this disease. There are also some lifestyle risk factors, such as smoking and obesity. 

For Rye resident Tara Shanes-Knebel, it took many months, countless hospital stays, and a litany of frustrating tests to reach her mother’s diagnosis in 2008. 

Tara Shanes-Knebel with her mom Gigi Shanes-Hernandez

“While pancreatic cancer has some common risk factors, my mom did not have ANY–no family history of the disease, she did not smoke, she did not drink, and was a vegetarian- pancreatic cancer was a total shock to our family,” she says. 

 Like many, her mother’s symptoms were not obvious and developed over time–abdominal pain, loss of appetite, unexplained weight loss, change in stool, and jaundice. By the time she was diagnosed, and after a formidable battle, she died just 11 months later at age 51.

“I was only 25 years old when my mom was taken away from me by pancreatic cancer. She was an amazing mom, wife, friend, daughter, and dedicated her life to helping others. She was taken from us too soon,” she says. Fueled by her mother’s drive and devotion, she continues her fight. “The night before my mom died, she told me she was going to ‘bring a victory flag to Washington, D.C.’ by fighting and surviving this horrible disease. I am now dedicated, in her memory, to awareness and advocacy for pancreatic cancer, as well fundraising to advance research and patient support to help others.”

Tara holding a banner for the Westchester Pancreatic Research Walk she founded.

To honor her mother, Shanes-Knebel created and organized the Westchester Pancreatic Cancer Research Walk in 2010, and the annual walk continues today. She partnered with the Lustgarten Foundation, the world’s largest private funder of pancreatic cancer research. Since its inception, the event has raised over $4,000,000 in Westchester alone for pancreatic cancer research. 

Let’s Win! Pancreatic Cancer annual event from 2019.
(L-R) Mike Greenstein, Jackie Greenstein, Rob Greenstein

The Lustgarten Foundation is also affiliated with Let’s Win! Pancreatic Cancer which helps educate patients about treatment options and provides hope for patients and families. This particular organization is close to the heart of Rob Greenstein, a Chappaqua resident who lost his sister Jackie to Stage IV pancreatic cancer last year. She was only 56 years old.

“Let’s Win! was co-founded by Jackie’s oncologist Dr. Allyson Ocean with a goal to get the latest science to doctors and patients in real time,” says Greenstein. “Pancreatic cancer that is diagnosed earlier is more treatable, so there is research focused on earlier detection, through blood tests, or monitoring of people that carry the genetic mutations or have a family history of the disease. There are clinical trials becoming more and more available–patients should not be afraid to get second opinions and look for trials that may help them.”

Currently, radiation and chemotherapy are used to prolong life, but low quality of life and high morbidity rates show that there is so much more to do. Research has made small but important  gains in recent years, drawing more attention, and subsequently more funding with high profile cases such as Alex Trebek and Ruth Bader Ginsburg. 

Advances such as immunotherapy, blood tests for early detection, genetic testing and molecular profiling of tumors and a slightly increased survival rate give families, patients, doctors and researchers hope. Funding alone has increased by over 900% in the past 10 years.

“Things are getting better, but the statistics are still grim,” says Mirza. “At PanCAN we often say we ‘wage hope’. This hope needs to be continuously kindled until we have beaten this deadly disease.”

UNDERSTAND YOUR DIAGNOSIS. ASK YOUR DOCTOR:

  • What type of pancreatic cancer do I have?
  • What tests and scans will you use to confirm a pancreatic cancer diagnosis?
  • Where in the pancreas is it located?
  • What is the stage?
  • Has it spread to other organs?
  • What treatments do you recommend? What choices do I have?
  • How many people with pancreatic cancer do you diagnose each year?
  • Can my tumor be removed through surgery? Why or why not?
  • Should my family and I be tested for hereditary pancreatic cancer?

GET A SECOND OPINION:

Always ask for a copy of your medical records and lab results, including:

  • CT scan
  • CA 19-9
  • MRI
  • EUS
  • ERCP
  • Biopsy results

RESOURCES:

Let’s Win! Pancreatic Cancer: letswinpc.org

Lustgarten Foundation: lustgarten.org

PanCAN: pancan.org

American Cancer Society: cancer.org

A Community Engaged

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April 15th marks 15 years since my mom passed of pancreatic cancer, that notorious Silent Killer, just a few days shy of her 70th birthday, also in April. I remember this difficult period well, from her diagnosis and hospitalization at Sloan Kettering to hospice care at Calvary Hospital where the palliative care at least helped fend off terrible pain. Over a brutal four-month period span, many family members and I stayed constantly at her bedside. I was also acutely aware of and had met others in my own community experiencing similar journeys–grappling with and reconciling the limited options for afflicted loved ones. Over the years, I have often wondered about the progress for earlier detection and more treatment options. Zabeen Mirza, whose father succumbed to the disease at age 40, had approached me about producing a story recognizing area families actively fundraising for key organizations like PanCan and the Lustgarten Foundation. I jumped on board and assigned the story to Robin Chwatko, and a cover story for Inside Chappaqua was born. Please know how grateful I am to the many in our community engaged in the battle.

In a similar vein, we also shine a light on efforts to fundraise to battle blood cancers by including a Greeley student’s most promising efforts via his personal campaign. In so doing, Spencer Katz honors his mom, Lisa Katz, a New Castle Town Board Member and a lymphoma survivor.

I’m continuously amazed and touched by our engaged and caring communities. With that in mind, I can point to several ‘engaged people’ profiles (and cover subjects!) we included such as one on Ronni Diamondstein, and of course, her beloved Maggie Mae. Megan Klein captures the essence of this ‘dynamic duo’ and their contributions, so enjoy. 

In this same edition, Megan’s work is featured in a story by Stacey Pfeffer about under the radar bloggers. Time to discover ‘Operation Happiness’ if you haven’t yet! Keira O’Sullivan’s delightful Pizza Ratings also made the cut, and in the next edition, we have more bloggers to introduce, too!

A first-time book author, Zach Schonfeld, offers a behind the scenes account of 24 Carat Black, an under the radar ‘70s era funk group.

Our schools have been meeting their greatest challenges in their very histories in managing this pandemic. In Inside Armonk, and as our cover story, Ella Ilan finds out how one district in particular persevered! 

Please don’t miss Jennifer Drubin Clark’s fun profile about Armonk’s favorite outdoors proponent and much beloved town figure. That would be Skip Beitzel, 2014 Armonk Citizen of the Year, and the owner of Hickory and Tweed for the past 36 years.

We also offer a forum to a much beloved figure at Breezemont Day Camp, Marnie Levy, whose transition to “Life Coach” could inspire many grappling with career choices to find their own path. If you are pushing yourself just a bit too hard, a must read are Marni’s self care tips too.

Per usual, there’s ‘much more’ to enjoy, a gorgeous poem by Tanvi Prasad that I’ll forever think of as a gift to Mother Earth, and our ‘Etcetera’ column by Dan Levitz on how the pandemic has changed things up dramatically but how we still as a community retain so much that’s meaningful.

Anna Young takes us into Briarcliff Manor for a glimpse of newly revitalized parks and trails. Fewer excuses not to hit the great outdoors!

If you are among the many thousands who miss planned and unplanned jaunts to the Burns, here’s a chance to catch up with Christine Pasqueralle on what they are up to and how they have made community comfort and safety a priority too with their virtual offerings.

Our advertisers share some exciting spring promises, too, as Shauna Levy relates.

And here’s my final Springtime promise: In our next set of editions, I plan to tip my hat to an array of some truly darling and community-minded moms and dads residing among us. We are planning just one more set of editions for this spring, doubling up on our Mother’s Day/Father’s Day coverage efforts, and already so much that’s wonderful is in the works. Happy Spring to you and yours.

A Tribute to My Aunt Jane

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I’M EIGHT, and standing by my bed is an actual grownup in iguana-themed pajamas: Aunt Jane.

“Wakey-wakey, ‘Lil Wingman!’” my weekend guardian commands. “What’re we doing today?”

“Ummmm…pajamas, TV and Häagen-Dazs all day long…and NO TELLING Mom!»

“You’re on, kid.”

We spend the next 48 hours sugar-high and stoked on back-to-back “Star Wars” flicks.

Jane’s officially the Pied Piper of my childhood.

TEN. It’s my birthday, and Jane brings a record–old to her, new to me.

Bruuuuce.

She and my dad start singing, dancing, playing air guitar, pulling me in. The music swells like an ocean, its hypnotic waves–love, loss, freedom–all new to me.

And time feels…infinite.

“Wait’ll you see Springsteen!” exults Jane (a Jersey girl). But I already know: I’m Born to Run.

THIRTEEN. My Bar Mitzvah is eclipsed by shocking news: Jane has pancreatic cancer. I can’t even fathom what I’m Googling: a 7% survival rate??

Jane starts chemo; I start high school. Immersed in chemistry, biology, statistics, I find no antidote to fear. I do find PanCan (Pancreatic Cancer Action Network). Inspired by its motto—“Wage Hope!”—I launch a website that’ll tell Jane’s story while raising funds and awareness, team-jane.com. A bashful kid, I’m starting to…Run. Because maybe time’s not infinite after all.

FOURTEEN. Team Jane flourishes online and off as I coordinate supporters for a 5K. Jane walks nervously alongside me, wearing a brilliant smile. We raise $3K, far exceeding our goal. Afterwards I phone her, bursting with plans for our next event. She’s weirdly subdued. “Wingman,” she confides, “it was the worst day of my life.” First I’m stunned, wounded. Then I realize I’ve been given a trust. My Pied Piper’s yanked me past childhood and into the abyss where only she and her tumor live.

“Heyyy…c’mon,” I stammer, helpless for words of my own, “y-y-know what Bruce says, ‘No retreat/no-ohhh sur-ren-derrr…’”

“Of course!” she responds, playful again. “And we’re a team now, thanks to…my captain!”

Her new nickname for me–“The Captain”–fuels my shaky-but-growing belief in myself.

SIXTEEN. Brooklyn, Delaware, Chicago–at PanCan Walks nationwide, Dad and I represent Team Jane. Jane, despite cancer’s spread, keeps fighting. I keep coordinating, blogging, fundraising. I’ve raised nearly $150K, and with it, my confidence.

I summer-intern at PanCan. It’s intimidating–lobbying on Capitol Hill, being interviewed on TV, addressing hundreds at 5Ks. Most rewarding is creating “Voices of Hope,” a platform for teens to connect with survivors. Hope: it’s the only thing that quells the fear in kids like me, racing against time. Except…it’s not enough.

On 9/24/16, I cling to the last remaining beeps of Jane’s monitor. The only other sound in her crowded-but-hushed hospital room: Bruce, serenading from somebody’s phone. She can’t speak anymore but recognizes me, still tries flashing that smile that launched a thousand crazy adventures.

I can’t speak either, because there are no more words. Together we’d fought for life/love/family/all-day PJs/nonstop ice cream/Springsteen/a freaking CURE.

Anything but this statistic.

SEVENTEEN. Heavy-hearted and lead-footed, I summon Jane’s mantra: “You must do the thing you think you cannot do.” I intern at another pancreatic cancer organization, CodePurple, where massive amounts of data are the chief weapons against this monster. Travelling the Northeast, entrusted with a self-designed project, I interview leading clinicians and researchers.

It’s illuminating. Progress, I’m learning, is fueled by passion and data, like life encompassing both sugar-highs and heartbreak. I grapple with paradoxes: Jane’s eternal childlike persona and her adult hell. And I resume Running–not “away” from anything, but towards everything.

My momentum is now for the 65,000 Americans battling this cancer and the 50,000 who’ll be diagnosed next year. For Jane and all the others whose races have ended. And for my own self; for the ability to marry fear with hope, hardship with joy–to fill finite hours with infinite fun. Blessed with this rare gift, my aunt took on the world. Today, armed with a Häagen-Dazs pint and a playlist, I plan on doing the same.

Armonk Resident Joins fifth Annual Lustgarten Foundation NYC Pancreatic Cancer Research Walk

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Armonk resident Debbie Heidecorn to join annual walk on Sunday April 26th to raise awareness and funds for the Lustgarten Foundation funding pancreatic cancer research.
Armonk resident Debbie Heidecorn to join annual walk on Sunday April 26th to raise awareness and funds for the Lustgarten Foundation funding pancreatic cancer research.

Armonk resident Debbie Heidecorn will join fellow New York and tri-state area residents in honor of her father by participating in The Lustgarten Foundation’s fifth annual New York City Pancreatic Cancer Research Walk. The walk will be held on Sunday, April 26, at Pier 84 in Manhattan’s Hudson River Park.

The Lustgarten Foundation is the nation’s largest private foundation dedicated to funding pancreatic cancer research. Due to Cablevision’s support of The Lustgarten Foundation, 100 percent of every dollar that Debbie and her fellow walkers raise will go directly to pancreatic cancer research.

In 2007, Debbie and her family were shocked to discover that her 84-year-old father Sidney had pancreatic cancer. A routine scan for his heart condition had revealed a shadow on his pancreas. Despite being caught at the earliest stages, they struggled to find a doctor willing to treat his condition due to his age, but eventually a successful pancreatectomy gave her father eight more years of life. To celebrate, Debbie wanted to find a way to give back, and once she found out about The Lustgarten Foundation’s New York City Walk in 2013, she immediately joined with her family as Team “Big Sid.” Sadly, her father passed away in October 2014. But Debbie and her family are passionate about returning to the walk this year to help advance research for an early detection test.

Debbie believes that participating in the walk is an uplifting way to honor her father’s memory. And for Debbie, it is also fulfilling to know that 100 percent of all money she raises goes directly to pancreatic cancer research.

“Debbie’s incredible determination is shared by the many participants who join with the Foundation to walk each year in support of raising awareness and funding for pancreatic cancer research,” said Lustgarten Foundation Executive Director and Chief Operating Officer Kerri Kaplan. “We’re all walking together in the spirit of unity and hope that with more research, we will find a cure.”

The Lustgarten Foundation’s New York City Pancreatic Cancer Research Walk at Pier 84 in Manhattan’s Hudson River Park (between 43th & 44th Street and the West Side Highway) will begin at 9:30 a.m. on Sunday, April 26, with registration starting at 8:00 a.m. For more information about the walk and to register, please visit www.curePC.org.

About Pancreatic Cancer

Pancreatic cancer is swift and silent, often undetected until it’s too late. The overall five-year survival rate for pancreatic cancer is seven percent and most with advanced cancer die within a year. There are no early detection tests, no effective long-term treatments and, unless the cancer is surgically removed in its earliest stages, no cure. It is the fourth-leading cause of cancer deaths in the United States. For more information about pancreatic cancer, please visit: www.curepc.org/infographic.

About The Lustgarten Foundation

The Lustgarten Foundation is America’s largest private foundation dedicated to funding pancreatic cancer research. Based in Bethpage, New York, the Foundation supports research to find a cure for pancreatic cancer, facilitates dialogue within the medical and scientific community, and educates the public about the disease through awareness campaigns and fundraising events. The Foundation has provided millions of research dollars and assembled the best scientific minds with the hope that one day, a cure can be found. Due to the support of Cablevision Systems Corporation, a leading media and telecommunications company, 100 percent of every dollar donated to the Foundation goes directly to pancreatic cancer research. The Lustgarten Foundation and Cablevision are also partners in the curePC public awareness campaign in support of the fight against pancreatic cancer.For additional information, please visit www.curePC.org.