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Kicking Cancer’s Butt

Join Me in the Fight 

by Katherin Mueller

As I write this, I am about eight months into my “new normal” aka living with NETs. I have had time to absorb the fact that, despite only being in my late twenties, I have cancer, and probably will for the rest of my life.

I have also had time to come to the realization that I am strong. I have realized that I have a voice that people may want to hear. I have the opportunity to inspire, motivate, and make a difference.

With the help and support of my family, I decided on a fundraising event as my first step in making a difference. We chose the NET Research Foundation as our event beneficiary because they represent the opportunity to help fund the most promising research in neuroendocrine cancers to develop improved treatments and ultimately identify a cure. I knew from the moment Susan Payson (Chief Development Officer at NETRF) reached out to us, with enthusiasm, warmth, and the offer to help us in any way possible to make our event a success, that we had chosen the right place for our donations to go.

We decided the event would be called “Fight NET Cancer with Katherine” and would take place from 11 am to 8 pm on August 24th in my hometown of Severna Park, Maryland at the TapHouse Bar & Grill. To date, we have raised almost $28,000 through event ticket sales, sponsorships, and donations. With 2 weeks to go, and not even counting the funds we are going to raise on the 24th from t-shirt sales, raffles, and auction items, I am confident we are going to blow my original goal of raising $30,000 ($60,000 when matched) out of the water.

Purchase Tickets

I am absolutely filled with gratitude and love for my community members who have wrapped their arms around me and come together in a huge way to support me and my family in our mission to fight NETs. I look forward to the future knowing that I am just getting started.

Listen to Katherine tell her story on 1430 AM WNAV  during a radio interview.  

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Delivering chemotherapy directly to tumors using PET/CT

New grant explores precision drug delivery in NETs

The American Association of Cancer Researchers (AACR) has awarded a NETRF-funded research grant to a Texas researcher to explore image-guided drug delivery (IGDD). Ali Azhdarinia, PhD, University of  Texas will leverage strategies using Gallium- 68 dotatoc PET/CT scans to treat neuroendocrine tumors (NETs) in the gastrointestinal tract and pancreas.

In his innovative studies, the imaging agent used to “light up” neuroendocrine tumors will be paired with temozolomide, a chemotherapy drug already shown to have clinical efficacy. The imaging agent attaches to the somatostatin receptors of neuroendocrine tumor cells, thus targeting the drug specifically to the cancer cells but not to normal cells.

Azhdarinia and colleagues will explore the degree to which this image-guided delivery of chemotherapy increases damage to tumor cells and reduces damage to healthy cells using tumor models.

“Metastatic NETs often require systemic treatment whose efficacy may be offset by toxic side effects that adversely affect normal cells of the body,” said John Kanki, PhD, NETRF Director of Research. “The funded work by Dr. Azhdarinia explores tumor-specific drug delivery strategies that may avoid these side effects while allowing higher, more effective doses to overcome drug resistance.”

The approach, given its integration with PET/CT imaging, may also offer researchers insight into the uptake of chemotherapy in the tumor and help to monitor response to treatment.

As a preliminary investigation of IGDD, this study explores logistical aspects of pairing a chemotherapy drug with an imaging agent for early testing in laboratory models. If the concept shows promise, it would then undergo further laboratory testing to understand the benefits and harms of the approach before progressing into clinical trials in humans.

NETRF has collaborated with AACR on research grants since 2010. This collaboration helps improve awareness and exposure of NETs among the AACR’s membership of 25,000 cancer researchers and clinicians.

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Retrospective Art Show to Benefit NETRF

Oil paintings by artist who died of NET for sale 

The Heritage Inn, Sherborn, MA,  will host a Retrospective Art Show and final sale of works by late artist, Carl Schaad (1946 – 2011).  The three-month exhibit opens with a reception from 5:30 -7:30 pm on September 10, 2019. Approximately 30 oil paintings and 11 giclee limited edition prints created over three decades will be available for sale.

At 64, Schaad succumbed to neuroendocrine cancer. A portion of the proceeds from this retrospective show will benefit the Neuroendocrine Tumor Research Foundation (NETRF).

A well-known Massachusetts painter, Schaad captured landscapes and still life scenes in a subtle color palette. With a strong command of light as a means of conveying emotion, Schaad’s work pulls viewers into the canvas to experience Montalcino’s bell towers ringing, a young boy dipping his toy boat in the waters of Rhode Island’s shore, or a May wind swirling Tuscany’s red poppies. His lyrical craftsmanship creates a meditative mood  of ordinary scenes.

He was moved by Impressionists Berthe Morisot and Mary Cassatt. He favored realism and a classical approach leaning toward American Impressionism. Most weekends Schaad could be found painting “en plein air” in rural and coastal settings.

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A decade of mysterious symptoms caused by NETs

Schaad’s neuroendocrine tumor diagnosis was incidental. In 2007, Schaad was hit by an SUV while training for the Italian bike race Giro D’Italia.  He was airlifted to hospital with 33 breaks to his ribs, a collapsed lung, and  head hematoma. A diagnostic CT scan also found neuroendocrine tumors, which had spread to his liver.

The neuroendocrine tumor diagnosis explained ten years of mysterious symptoms: unexplained stomach cramping and diarrhea, flushing and shortness of breath. Following his diagnosis, he underwent 4 1/2 years of treatment.

A lifelong love of painting

Schaad had an unusual career for an artist. He began seriously painting in his 30s while also working in the corporate world, eventually rising to senior leadership levels at Heidrick & Struggles, a global executive search firm.  Throughout his business career, Schaad continued his art studies at The Museum School of Boston, The Art Guild of Boston, and the Ingbretson Atelier.  He studied with Robert Cormier, William Bartlett, mentor/friend William Ternes, Joseph McGurl, and Mary Minifie.

At age 55, he left the corporate world to paint full time. Finally able to follow his passion, he was sculpting beautiful images with paint. He was represented by The Wally Findlay Gallery, in NYC, Chicago and Palm Beach; J. Todd Gallery in Wellesley; and The Christina Gallery on Martha’s Vineyard.

In Carl’s memory, the Schaad family will be donating a portion of the proceeds of this retrospective show and sale to the Neuroendocrine Tumor Research Foundation.  They hope to help others by funding much-needed research for a cure and raising awareness about confusing symptoms that are often misdiagnosed.

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Coping with the uncertainty of cancer

Jeff Danuloff and his wife Jasmine, who offered positive, encouraging, loving support during his lengthy illness.

How one family navigated NETs

There are so many unknowns when you live with neuroendocrine tumor (NETs).  You can’t predict how you will respond to treatment, and it can be hard to know how neuroendocrine cancer will change the life you imagined for yourself.  See how one family learned about coping with the uncertainty of neuroendocrinr cancer. 

(Left to right) Youngest daughter (Aubrey Danuloff), Jeff Danuloff, and Wilma Fellman.

During her son’s six-year journey with pancreatic neuroendocrine tumor (pNET), Wilma Fellman, a career counselor and life coach, got to practice what she preached about living in the present. Jeff Danuloff was a muscular married professional with two young daughters. He taught martial arts and made a hobby into a career with cars.

“When he was diagnosed at 37, we were 100% sure they had the wrong medical file,” Wilma said. “He was the healthiest person I knew.”

In that instant, their lives changed forever. “Everyone lives with uncertainty,” said Wilma. “We were just much more aware of it.”

Focus on the present

Jeff realized that cancer tests and treatment were a new way of life. But it didn’t overtake his life; it was integrated. He scheduled embolization and chemotherapy to minimize interference with work and family.

He took it one day at a time. “He’d say, ‘Today, I’m OK. Today I am going to work, then to pick up my kids.’ And if he had to take a handful of pills to be able to do that, then he did that,” said Wilma. Jeff’s commute to work was sometimes interrupted with bouts of nausea and vomiting, but he didn’t turn around for home; he went to work.

Find joy

Jeff Danuloff with wife Jasmine and daughters Jaelyn and Aubrey.

Coping with the uncertainty of a cancer diagnosis means finding ways

to take your mind off cancer, to do what you enjoy most, finding meaning and purpose. “People [with cancer] sometimes drop things they feel passionate about at the time they need it most,” said Wilma, who has coached clients on how to find meaningful interests following retirement. “Do something where you can lose yourself for a few hours.”

Jeff poured himself into his hobbies of teaching martial arts, target practice, and cars, even when it meant heading to the gym at 8 pm after working a full day…or going to work out at 5 am.

For Jeff’s family, joy also came in the form of laughter. They learned to laugh, even cry-laugh. “We would seek out standup comedians on YouTube and HBO,” said Wilma. Staying positive was key for them. If Jeff was having a bad day, he’d reach out to a friend or family member to watch a funny movie with him.

Learn as much as you can

Being informed helps reduce uncertainty. It can also help you feel more in control. Early on, Jeff and his family focused on learning as much as they could about neuroendocrine cancer and its treatment options. As a person who grew up with Attention-Deficit Hyperactivity Disorder (ADHD), Jeff knew he wasn’t the best person to do all the research. So, he divided it up. His family served as his researchers, gathering data, finding reliable sources for accurate information, and then sharing that information.

Establish good communication with your care team

Doctor’s visits can be a challenge. There is never enough time to learn all you need to know. And there can be a lot of unfamiliar terms. That’s why Jeff always took someone with him (or many people…commonly referred to as his “tribe,” for every test and treatment. He came prepared with a list of questions, tough questions, so he knew what to expect. In addition to taking notes on the answers, Jeff and his family members used their cell phones to make audio recordings of the doctors’ answers so they could go back and listen again and again.

Friends and family supported Jeff during his cancer journey. Left to right: step brother (Michael Stallsmith), brother (Rick Danuloff), Jeff Danuloff, good friend Jimmy Elowe.

Find support

To cope with the emotional challenges of living with neuroendocrine tumors, people need someone to talk to, someone they trust, someone that will listen without judging.

That can take many different forms. Some people rely on support groups, mental health counselors, or faith leaders.

Jeff turned to his devoted wife Jasmine, friends, and family for support.  He was particularly adept at knowing who to call when, whether he needed someone to listen to him vent or someone to tell him to snap out of it.  

Stay positive

It is common to have days when you’re down. Let yourself grieve in whatever way feels natural. But find tools to bring you back from that place.

“Jeff sometimes needed a couple of hours of wallowing and feeling sorry for himself because of all of the needles, poking, and jumping into bushes to throw up. He’d ask the normal question… ‘Why is this happening to me?’” said Wilma.

The Danuloff/Fellman family, however, doesn’t believe in good days and bad days. Instead, Jeff’s aunt coined the phrase “good minutes and bad minutes.”

“You don’t write off the whole day because you feel crappy for a few minutes. That’s an overgeneralization,” said Wilma. 

This philosophical perspective helped Jeff reframe and move beyond the moments when cancer seemed too much to bear. He used problem-solving to get beyond “bad minutes.”

“Whatever the problem was in that minute, we would try to solve it to ease the situation,” said Wilma.  Jeff’s care team helped ease pain, symptoms, and side effects. His doctors helped him find what he needed to get through it.

Celebrate life

Jeff’s family celebrated his cancerversary (anniversary of his cancer diagnosis) every year.  This allowed them to celebrate what was good and be thankful for another year together.

When Jeff passed in May of 2019, 600 people celebrated the life he led… a life filled with intention, passion, and purpose, despite illness and obstacles that tried to slow him down.  His energy and positivity were universally inspirational.  

To honor Jeff, Jeff’s family has established a tribute fund in his memory to raise $10,000 for neuroendocrine tumor research.

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Travel Tips for Cancer Patients

Neuroendocrine cancer patients traveling for pleasure, business, or cancer treatment, may need to consider a few extra details to ensure travel goes smoothly. These travel tips for NET cancer patients can help you plan a happy, healthy, and safe trip.

Planning for travel with cancer 

Medical documentation to bring

Insurance cards.

Copy of prescriptions. Bring an extra copy of your prescriptions in case your medication is lost, stolen, or damaged.

Physician letter. Get a letter (on letterhead) from your doctor about the medical necessity of  any carry-on NET treatments (especially important for controlled substances, medical devices/implants, oxygen, injection needles, or medical equipment). You may need to show this letter to airport security, border, or customs officials.

Medical history. Print out a copy of your medical records including diagnosis, recent treatment, and medication schedule. Some Medical ID bracelets (e.g., Medic Alert or Road iD) allow you to upload medical history and insurance information online so it can be accessed by emergency responders. 

Contact info. Take along contact info for your treatment team and know who to contact for routine questions and for emergencies.

Packing essentials for travel during cancer treatment

Make sure you’ve packed these items.

Enough medication for your travel days, plus a few extra days in case you experience any delays. Keep your medication in its original packaging. Pack medication and medical supplies in a carry-on bag. Use cooling packs to comply with medication storage instructions.

Extra medical supplies. Bring extra batteries, spare parts, and electrical adapters for any medical equipment you use.

Hand sanitizer for use before eating or drinking.

Insect repellant with DEET to prevent mosquito- and tick-borne illnesses.

Sunscreen (UVA/UVB 30 SPF or higher), a wide-brimmed hat, and sunglasses.

Find more packing tips here:  https://wwwnc.cdc.gov/travel/page/pack-smart#travelhealthkit

Look for comfort, assistance

Select airplane, bus, or train seating with ample legroom. Aisle seats may make it easier to move around every few hours when you must sit for extended periods.

Look for reclining seats for increased comfort.

Take advantage of passenger support and convenience services to minimize walking and lifting. Use a wheelchair to get around airports. Board aircraft early with assistance. If you think you will need access to handicap seating, parking, or other supports during your travel, ask your doctor how to apply for a placard.

Notify airport security of your medical condition and inform screeners if you have  injectable medication supplies and storage tools, implants, devices, or  radioactive medications. You may qualify for special assistance during the security screening.

International travel 

International travelers should learn about accessing health care abroad, travel health insurance issues,  traveling with medicine, be informed about their destination, know how to locate a US Embassy, and learn about common travel issues. 

Prevent travel-related diarrhea

Diarrhea is the most common travel-related illness, which in an unwelcome risk for those living with neuroendocrine cancer. The Centers for Disease Control reports it can occur anywhere, but the highest-risk destinations are Asia (except for Japan), Middle East, Africa, Mexico, and Central and South America.

To protect yourself, keep your hands clean. Wash your hands frequently and thoroughly. Carry hand sanitizer with you when you are out and about.  Keep your hands away from your mouth.

Exercise caution with food and water when you visit places where water quality can vary.

Use sealed bottled water for drinking, taking medication, and brushing teeth.

Don’t use ice in your beverages.

Avoid food that has been exposed to flies.

Tips to avoid food-borne illness while traveling

Eat

Food that is freshly and thoroughly cooked and served hot. Food from sealed packages. Hard-cooked eggs. Fruits and vegetables you have washed in safe water or peeled yourself. Pasteurized dairy products.

Don’t Eat

Food on salad bars or buffets. Food from street vendors. Raw or soft-cooked (runny) eggs. Raw or undercooked (rare) meat or fish. Unwashed or unpeeled raw fruits and vegetables. Condiments (such as salsa) made with fresh ingredients. Salads. Flavored ice or popsicles. Unpasteurized dairy products. Bushmeat (monkeys, bats, or other wild game).

Drink 

Water, sodas, or sports drinks that are bottled and sealed (carbonated is safer). Water that has been disinfected (boiled, filtered, treated). Ice made with bottled or disinfected water. Hot coffee or tea. Pasteurized milk.

Don’t Drink

Tap or well water. Fountain soda drinks. Drinks made with tap or well water (such as reconstituted juice). Unpasteurized milk. Open dairy products left out for use with coffee or tea.

Enjoy yourself

Getting all these details worked out ahead of time, can free you up to focus on enjoying your travels.  Here are a few tips for making the most of your trip.

Find simple, small pleasures as often as you can.

Try new experiences.

Plan a balanced mix of activities that are quiet and relaxing activities  (i.e., reading, resting) and ones that are stimulating and social (i.e., meals, entertainment).

Avoid day-to-day chores, like cooking, cleaning, laundry.  Figure out how someone else can provide those services. 

End with a bang. Splurge on a luxury item or activity toward the end of your stay to create a long-lasting, positive memory.  

Limit work calls and email while vacationing.

Slowly ease back into work and household responsibilities by giving yourself some transition time upon your return.

Remember the good times. Post the photos of the good times on social media and tell your friends and families about your favorite memories. Leave the less-than-fun experiences, like airport delays, in the past to be forgotten.  

References

Centers for Disease Control. Travelers health: food and water safety. https://wwwnc.cdc.gov/travel/page/food-water-safety. Accessed June 28, 2019.

Perdue C, Noble S. Foreign travel for advanced cancer patients: a guide for healthcare professionals. Postgrad Med J. 2007;83(981):437–444. doi:10.1136/pgmj.2006.054593.

Vanderkam, L. The scientifically proven way to have the best vacation ever. Fast Company. July 24, 2015. Accessed July 12, 2019.

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NETRF-Funded Finding May Help Predict Pancreatic NET (pNET) Recurrence

 A group of NETRF-funded researchers has discovered molecular information that may help predict recurrence of non-functional pancreatic neuroendocrine tumors (pNETs), which do not release excess hormones into the bloodstream. In a paper published today in Nature Medicine, the researchers describe new subtypes of pNETs with vastly different risks of recurrence.

Lead investigator Ramesh Shivdasani, MD, PhD, Dana-Farber Cancer Institute, Harvard Medical School, said the finding moves us closer to being able to identify patients with a high risk for metastasis at diagnosis and initial treatment. “These patients can be monitored vigilantly for recurrent cancers, which may be treatable if detected early, while patients with the less aggressive kind of pNET can be advised that the prognosis is excellent.”

“This significant research is a result of the collaborative spirit NETRF fosters among our funded researchers. Drs. Ramesh Shivdasani and Bradley Bernstein assembled a top team of scientists who shared knowledge and resources, to advance our understanding of NETs that can help us improve care for those facing the highest risks,” said Elyse Gellerman, NETRF Chief Executive Officer.

Predicting pNET recurrence

Currently, physicians predict a patient’s risk of pNET recurrence using tumor size. Non-functional pNETs larger than 2 centimeters are considered the most likely to metastasize following surgery.

Building on molecular findings in about a dozen pNETs, Shivdasani and colleagues analyzed the molecular profiles of another 142 pNET tumor specimens using new laboratory tests for expression of specific proteins. Shivdasani notes that the findings divided pNETs, sharply and unexpectedly, into roughly equal fractions of those that resemble normal alpha cells and express the regulatory protein ARX and others that resemble beta cells and express the regulatory protein PDX1.

Non-functional pNET prognostic classification 

Type A

Type B

84% of 142 pNET cell specimens had cancer cells that shared features with normal pancreas alpha (α) or beta (β) cells 

High α

Low β

Low α

High β

The NET cells were different from normal cells when levels of these regulatory proteins were present (+) or absent (-)

ARX+

PDX1-

ARX-

PDX+

Fraction of patients (with known clinical follow-up) whose tumor progressed

38

4

Source: Cejas P, et al. Nature Medicine. 2019.

The researchers were able to analyze data on tumor relapse for most patients whose tumor specimens were included in the study. Tumors with exclusive ARX expression had more than 35% risk of recurrence following surgery, compared to less than 5% risk if the tumor lacked ARX. Among study participants whose tumors showed high ARX levels, cancer recurred in the liver within 1 to 4 years, compared to the rare recurrence of tumors that expressed PDX1.

ARX and PDX1 levels can be measured using immunohistochemistry (IHC), a test that stains tumor tissue and is routine in clinical laboratories. Current IHC assays do not test for these proteins, but the researchers note that they could easily be brought into routine diagnostic testing in a matter of months. Should the findings of this study be corroborated in future clinical research, the prognostic impact for patients with a new pNET diagnosis will be significant.

The next steps are to make the distinction of the new pNET subtypes possible in clinical laboratories and to confirm the findings in larger groups of patients.

This laboratory study is an early step in identifying prognostic markers for non-functioning pNETs. Medical research often starts in the laboratory and then takes years to move into clinical testing in humans. Because IHC assays for ARX and PDX1 can be developed readily, the new findings could be implemented into routine patient care considerably faster.

The finding is the result of NETRF grants given to Drs. Shivdasani and Matthew Kulke at Dana-Farber Cancer Institute and Drs. Bradley Bernstein and Daniel Chung at Massachusetts General Hospital. All the investigators are on the faculty of Harvard Medical School.

See published article for more information: Cejas P, et al. Enhancer signatures stratify and predict outcomes of non-functional pancreatic neuroendocrine tumors. Nature Medicine. Published online ahead of print. July 1, 2019. https://www.nature.com/articles/s41591-019-0493-4

Read about the NETRF grants given to Drs. Shivdasani and Bernstein  

Epigenomic analysis of intestinal neuroendocrine cells and the epigenetic basis of NETs

General Description Dr. Shivdasani’s laboratory studies how gastrointestinal stem cells make the decision to stop

Identifying altered epigenetic states and drivers in intestinal carcinoid and pancreatic NETs

General Description Bernstein and colleagues will work to identify altered epigenetic states and drivers in

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RFA Response 2019

Researchers from 20 different states across the U.S and 19 countries worldwide, responded to the Neuroendocrine Tumor Research Foundation’s 2019 call for grant applications.

“We had a wonderful global response to the call for applications this year and we are looking forward to identifying the best proposals to recommend for funding. We know that these studies provide our best chances to advance our understanding of NETs in pursuit of improved treatments ” said John Kanki, PhD, NETRF Director of Research.

The Foundation offers four different grant programs offering research funding up to $1.2 million for up to four years. The 2019 grant cycle includes a new grant for early career researchers, called the Mentored Award, which aims to recruit more young researchers to the neuroendocrine cancer field.

As a next step, the short preliminary applications will be evaluated by NETRF’s Board of Scientific Advisors and external reviewers. A portion of the respondents will then be invited to submit full, comprehensive proposals for funding consideration. Following scientific review, the NETRF Board of Directors will confirm and approve the final funding recommendations.

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Podcast Coming Soon

Listen and Learn

Being diagnosed with neuroendocrine cancer can make you feel like you are alone, like you’ve been blindsided with the unknown. The NET Research Foundation is here to remind you that we are here for you. From free in-person conferences to online resources to accessible video content to now… PODCASTS!

The NETRF is pleased to announce our newest education medium. More intimate and portable than a series of videos and more in-depth and narratively engaging than brochures or booklets, podcasts can present information directly from the voices of leading experts in a way that is compelling, accessible, and portable, can be shared easily, widely, and for free, and can be listened to privately in just about any situation: at home, in the car, on public transportation, in bed, in a living room, or in a waiting room.

Covering all the basics and the intricacies of NETs, NETRF interviewed more than twenty NET experts and patients from around the world to bring you our podcast series: NET Wise.

Subscribe today so that you can be notified when we release our episodes.

Subscribe to NETRF Podcast

Browse our Youtube Channel Video Library

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NETRF Welcomes John Kanki, PhD, as New Research Director

John Kanki, PhD, has joined Neuroendocrine Tumor Research Foundation (NETRF) as Director of Research. In this position, Dr. Kanki will oversee the strategic, scientific, and operational goals of the NETRF research programs.

“John brings both scientific and granting expertise to the Foundation that will help us continue to expand and innovate,” said Elyse Gellerman, NETRF Chief Executive Officer.

Before joining NETRF, Dr. Kanki served as Managing Director at The Medical Foundation for eight years where he developed ten new grant programs, conducted over twenty life sciences consulting projects, and supervised the management of sixteen concurrent award programs across a broad range of scientific disciplines and program missions.

“At NETRF, I will be working to widen and deepen the Foundation’s research portfolio across the spectrum of basic and translational research to move the field forward towards improved NET diagnostic and treatment options, said John Kanki, PhD, NETRF Director of Research.

Dr. Kanki is an accomplished research scientist with an extensive publication record. He received a PhD in Biology and conducted postdoctoral research in neurobiology, developmental biology, and pancreas organogenesis/diabetes. As a Senior Research Scientist at the Dana‐Farber Cancer Institute for twelve years, he received the Partners in Excellence Award and supervised research in myelodysplastic syndromes, leukemia, and neuroblastoma.

Dr. Kanki serves on the Board of Directors for the Health Research Alliance, a group of over 80 private funders working together to optimize investment in health research and training, share best practices, and collectively provide over $1.5 billion annually in biomedical research.

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In memory of Carol Branaman

NETRF has lost a leader in its community to neuroendocrine cancer. Carol Branaman died in early June.  Carol joined the NETRF Board of Directors in 2011. She was Chair of the Board from 2014 through 2016 and Vice Chair in 2017 to the present. Carol’s involvement in NETRF was inspired by her own experience with NETs. She was captivated by what research was being conducted in neuroendocrine cancer, realizing that research was the first step to understand neuroendocrine tumors.

“Carol was an energetic and passionate advocate for neuroendocrine cancer research funding,” said Joe Li, MD, Chair, Board of Directors.  “She had an inquisitive mind and was not afraid to ask hard questions.  She represented the best in all of us and it was truly a pleasure to serve alongside her.  She will be missed.”

On the NETRF Board of Directors, Carol challenged the Foundation’s leadership to reach further, dream bigger, and extend our community of researchers. She led the Board during a period of unprecedented growth, both in NETRF’s ability to fund research and the development of organizational structure. Carol also advocated for the investigation of promising research that could lead to new treatment options. During Carol’s service on the Board, NETRF funded many innovative research projects, such as CAR T-cell therapy, immunotherapy, PRRT, and most recently, smart chemotherapy and a cancer vaccine.

“Carol cared deeply about NETRF, but even more deeply about our staff, fellow Board members, and supporters,” said Elyse Gellerman, NETRF CEO.  “We will greatly miss her friendship and guidance.”

Carol was a bold, brave leader, willing to explore opportunities. Her energy and positivity shone brightly, offering others strength and hope. Her presence will be missed, but her impact on the organization is profound and lasting. As a result, generations going forward will benefit from her passion, purpose, and courage.

Carol retired from a career as an air traffic controller and regional executive of the National Air Traffic Controllers Association (NATCA). She began as a controller at the Daytona Beach Tower, later transferring to the tower at Centennial ATCT in Colorado.

She is survived by her husband, Tim Branaman; sisters, Barbara Taylor and Nancy Miller; and her beloved dog, Mattie.

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Slamdunkin’ NETs

From a place of discouragement after being diagnosed with a NET in June 2018, Susan Garrett of Roxboro, NC, saw a news story on WRAL about Rocks for Hope – initiated by another NET patient, Ashley Linden. ‘Ashley’s story touched me, gave me my own hope and made me realize that I needed to join Rocks for Hope and do good for others who are also dealing with a cancer diagnosis.’ Ashley passed away in January 2019, Susan did not have the opportunity to meet her but has continued to paint inspirational rocks to spread hope to cancer patients at the Duke Cancer Center, where she is receiving her care. ‘It feels good to do something good for other people,’ shared Susan.

Susan’s efforts were expanded as she, her sister, Elizabeth St. John and other friends and family organized and hosted the The Slamdunkin’ NETs event just last month. The event was a success on so many levels ~ it was a beautiful, hot, sunny day; 300 people came out to our event at the Concord United Methodist Church; we sold-out our hotdog lunch and many Zebra games were played. ‘In fact, Pastor Karl was beaten by his wife in a game of Zebra,’ commented Elizabeth, who is an oncology nurse and Susan’s sister. The biggest success was gathering so much hope from the community through donations, painting rocks and supporting Susan.

As the Slamdunkin’ event closes its books, $3,100 will be donated to NETRF. ‘We are grateful that our efforts will be matched through the Spark Hope Campaign,’ shared Elizabeth.

‘I am grateful for the tiresome work NET Research Foundation toward funding NET research. I’m hoping and praying to just have better treatments to help us live a more comfortable life. Time goes so quickly. It’s been almost a year since my diagnosis. I’m looking forward to doing an event again next year. I would certainly love to partner once again,’ shared Susan.

Please enjoy reading the Slamdunkin’ NETs Blog written by Elizabeth St. John…

Slamdunkin’ the NETS Blog A Labor of Love

by Elizabeth St. John May 2019

Slamdunkin’ the NETS was nothing short of a labor of love! Really! From the start of planning to clean-up after the event there was no stopping anyone. We, as a family and surrounded by friends and loved ones, wanted to let the world know just how serious we are about making this place cancer free for our children and those who come after us. And we did just that! We kicked cancer’s butt on a Saturday from 10 am until 3 pm.

The day started early with everyone arriving to set-up and making sure of last minute details. Excitement began to build as fellowship hall at the church started buzzing with talk and laughter and kidding about which team would bring in the big prize! Would that be the UNC basketball or the autographed DUKE basketball team photo or the NCSU autographed basketball? The tables were filled with donations for our raffle and door prizes. The vendors were bringing character to the room with their wares. The kitchen was buzzing and the men took over to cook. Outside in the picnic shelter there were tables ready for people to sit and stand and create works of art on rocks to give hope to those who need it and to spread some cheer. Young people were painting faces to look like zebras and butterflies!

The bouncy house was set-up for those wishing to have fun and jump their cares away. As the day progressed we had many friends and community members join us for food, fun and the friendship as we discussed old times, new times, and the reason we joined together for the event. Some came from two minutes away while others ventured from four hours away to help the cause. It was beautiful to see the people enjoying one another’s company while having a hot dog lunch or discussing what they had purchased or whatever else came to mind. The hot dog luncheon sold 300 hot dogs and we had to get more slaw!

The free throw contest was an all out brawl! Young and old showed off their best shots and even the pastor and his wife participated! The trophy ultimately went to a 14 year-old, young man who made 17 baskets in a minute.

During the last hour we had the drawings for the silent auction prizes and the door prize raffles. You could hear folks buzzing with hope that they would walk away with a top prize. And some wheeling and dealing for the silent auction prizes for sure! Even by telephone there was last minute bid made! Door prizes and silent auction totals came to $725 for NET research.

At the end of the day we came together to say “thank you” to everyone for their support and that we are committed to making this world free of NETS cancer and bringing about awareness of the disease. More Rocks of Hope have been subsequently distributed across our area at the Duke Cancer Center Gardens or local cancer centers or by individuals where they live. The zebra t-shirts continue to be worn to bring awareness of NETS cancer to others. But we haven’t stopped praying for or fighting for a cure! Yes, we raised approximately $3,100 in five hours on a Saturday afternoon for NET research.

This is just the start. We have come together as a family for a cause. We had a blast during the event! We laughed and cried! We wanted to bring the awareness to the community and we are proud to be a part of this area. We cannot thank everyone enough for the support we were given. From start to finish we didn’t stop. And neither did anyone else. And that is nothing short of the definition of a labor of love.

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Targeted Therapy Under Investigation

UCSF Reports on Clinical Trial

At the 2019  meeting of the American Cancer Society of Clinical Oncologists (ASCO), Emily Bergsland, MD, University of California, San Francisco, reported on the results of a phase II clinical trial of pazopanib (PZ).  The study evaluated how well PZ treats patients with advancing gastrointestinal neuroendocrine tumor (NETs), which were in the gut rather than the pancreas.

PZ is a drug taken orally that may stop or slow tumor growth by blocking cell processes required for the growth and expansion of the tumor cells. This clinical trial tested the efficacy of treating 171 study participants with either PZ or a placebo (inactive agent). Neither the patient nor the physician knew which treatment they received (PZ vs. placebo).  

Tumor image analyses determined whether cancers had continued to grow following the treatments. Results showed that patients taking PZ went an average of 11.6 months with no cancer progression, compared to 8.5 months for those taking the placebo.  This promising difference in tumor progression-free survival with PZ is “statistically significant” and not the result of chance.

“This is the first randomized study suggesting VEGF pathway is a valid target for therapy in carcinoid. Additional work is needed, and predictive biomarker analyses are already pending,” said Emily Bergsland, MD.

Study data undergoes secondary analysis

Importantly, understanding how PZ is having its positive effects on the tumors may lead to ways to further improve its efficacy and its therapeutic potential.

NETRF recently awarded a grant to Dr. Bergsland and colleagues to conduct detailed analyses of patient blood samples and CAT scans of tumor images collected throughout this trial to better understand the tumor responses to treatment.  This very novel work could contribute to the identification of biomarkers that could help identify those most likely to benefit from PZ.

What this trial means

Larger clinical studies of PZ are still needed to further understand whether the PZ treatment is beneficial and safe.  Clinical trials are designed to be performed in three phases spread out over many years to establish safe and optimal treatment regimens before a drug may be included in routine patient treatment. This study represents a successful second phase of work assessing the clinical effectiveness of PZ. Learn more about the phases of clinical trials.  

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FAQs Neuroendocrine Tumor Tissue Donation

The need for tumor tissue in NETs

The Neuroendocrine Tumor Research Foundation is on a mission to fill the urgent need for more neuroendocrine tumor tissue specimens for use in laboratory research. 

The tumor tissue is needed to support the NETRF Cell Line Project underway with Pattern.org and the Broad Institute.  

The Cell Line Project aims to expedite our molecular understanding of NETs and accelerate drug testing by increasing the tools and resources available to researchers.

Why do we need tumor tissue specimens?

Scientists use leftover pieces of tumor tissue extracted during surgical or biopsy procedures to build tumor models. 

What is a tumor model? 

Researchers study cancer in the laboratory using tumor models. A model may be in the form of cells, tissues, or organoids; they serve as a substitute for human beings in preclinical testing.  Models allow researchers to study the development and progression of neuroendocrine cancer, and to test new treatments before they are given to humans.

Why do we need a tumor model in NETs?

Models are a fundamental element of cancer research: the way lumber and cement are to a house. Models support the foundation upon which all other research rests. If ideas, concepts, or drugs can’t be studied in the laboratory, they cannot progress into clinical or human studies. Medical research starts in the laboratory. 

How do you donate tumor tissue?

Patients can donate tumor tissue through Pattern.org.  Pattern.org links to an electronic consent form where patients can learn more about contributing. Should a patient decide to provide consent, Pattern.org arranges for excess tissue to be shipped from the hospital to the cell line research laboratory. 

What happens to donated tumor tissue? 

Samples donated via Pattern.org are sent to the research laboratories at the Broad Institute where they will be used to develop tumor models as part of the Cell Line Project. Learn more. 

If you or a patient you know has an upcoming surgery, you can visit Pattern.org to learn more about donating tumor tissue to advance neuroendocrine tumor research. 

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NETRF Research Symposium

Latest in NET Cancer Research 

Neuroendocrine Tumor Research Foundation (NETRF) held its 11th Annual Research Symposium on May 2-3, 2019, in Cambridge, MA. More than 100 neuroendocrine tumor researchers and clinicians from 25 states and eight countries came together for two days to share progress and plans to advance the knowledge and treatment of NETs.

Physicians and scientists who have been involved with NETRF for more than a decade spoke inspirationally about NETRF’s progress in NETs, indicating that some of the early objectives of those who started the Foundation in 2005 were coming to fruition.

Early NETRF-funded researcher Matthew Meyerson, MD, said it was rewarding to be part of the evolution of NET research. “Remarkable progress has been made in the last ten-plus years. It is truly extraordinary. It has gone from a question of whether it can be done to seeing it and being amazed at how well it can be done.”

A long-standing member of NETRF’s Board of Scientific Advisors, Evan Vosburgh, MD, said we are at a tipping point, moving from follower to leader, “When you look at the quality of the work being presented, I think we will now be informing other tumor types. It’s almost flipped.”

Presenters at the conference shared unpublished research in many areas. Presentations on laboratory models, immuno-oncology, and nuclear medicine sparked the most discussion.

Building laboratory models of NETs

A lack of laboratory models has impeded progress in NETs for decades. NETRF has invested heavily in models since its inception.

���I think we have a lot of reasons to feel quite optimistic that there are positive developments coming through,” said Dan Chung, MD, Co-Chair, NETRF Board of Scientific Advisors.

Presenters shared promising results in organoids, 2-D cell lines, and patient-derived xenograft models.

Dr. Meyerson applauded the progress in creating cellular models to understand how and why NETs develop and to test new treatments. “It is going to make a huge difference in in terms of doing mechanistic and pharmacological studies.”

Next generation nuclear medicine

Four active NETRF grantees presented progress in making peptide receptor radionuclide therapy (PRRT) more effective for more people, with reduced side effects. Discussion surrounded the promising role of alpha particle radiopharmaceuticals in increasing the precision of PRRT to minimize damage to healthy tissue, for example, in the lungs, and to help to eliminate the smallest traces of NET cells to prevent metastasis. NETRF Board of Scientific Advisors Co-Chair George Fisher, MD, said he saw great potential in alpha therapy. “I think that that technology someday could represent, when combined with surgery to remove cancer, a potential cure, which is not a word that rolls off our tongue as often as we’d like. So, I’m proud that NETRF is investing in that research.”

The nuclear medicine session included a presentation from Profession Richard Baum, MD, PhD, Zentralklinik Bad Berka, Germany, a world renown expert in PRRT. Baum spoke of a future of precision oncology, where nuclear medicine is tailored to an individual’s molecular profile [based on molecular imaging] and not bound by a specific dosing regimen. “You can look at the patient’s molecular features before you start the treatment. Therefore, we can select the right patients, for the right treatment, with the right radio isotope.”

Clinical research of new treatments

New grantees presented plans for innovative pilot projects that will explore a vaccine and smart chemotherapy. Ramesh Shivdasani, MD, PhD, member NETRF Board of Scientific Advisors, pointed out that explorations of uncharted territory like this are considered too risky to be funded by other entities. “Many of the projects we remarked on for their progress would be impossible to achieve under conventional NIH/RO1 funding mechanisms. The Foundation is to be congratulated for taking a lot of risks.”

University of California, San Francisco researcher Chester Chamberlin, PhD, presented an update on NETRF-funded research that he said was a “gamble” when proposed, but in the end contributed enormously to the field. “We really started with very little or nothing. If you tried to go to the NIH, for example, with an ‘idea,’ you’ll get turned away. They like to see a lot of very preliminary evidence that what you’re proposing to do is going to work. But NETRF had that faith in us we were able to do it.”

Chamberlin and colleagues succeeded in creating a patient-derived xenograft model. While testing drugs on the new model, they identified a new treatment in everolimus-resistant pancreatic NETs, sapanisertib. Sapanisertib is in phase II clinical trials in 406 locations, supported by NIH funding. 

“We are proud that we have supported researchers to explore new approaches to understand NETs and their work is showing early results,” says Elyse Gellerman, NETRF chief executive officer. “NETRF’s ultimate goal is a future where every NET patient has effective treatment options.”

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2019 NET Research Grants

NETRF Announces 2019 Neuroendocrine Cancer Research Funding Opportunities

New award to fund early career investigators

The Neuroendocrine Tumor Research Foundation (NETRF) has announced a new round of research grant opportunities. Its 2019 Request for Applications (RFA) invites innovative research applications in neuroendocrine tumors (NETs) to increase our basic understanding of these uncommon tumors and lead to the development of more effective therapies. The grants range from $100,000 to $1.2 million to support projects ranging from one year to four years for basic, translational, or clinical research.

This year, NETRF will offer a new Mentored Award, a two-year grant for early career researchers, who are completing post-doctoral, residency, or fellowship positions. This grant is designed to recruit young talented scientists to the NET field at a pivotal point in their careers. The Mentored Award is supported through a grant from IPSEN.

George Fisher, MD, PhD

“If you are just finishing up graduate school or your post-doctoral fellowship, you don’t have a lab unless you get funding, you don’t have a career unless you get funding to do research,” said George Fisher, MD, PhD, co-chair, NETRF Board of Scientific Advisors. “The Mentored Award will enable junior investigators to get a foothold by starting and finishing a project in order to build a career in neuroendocrine tumor research.”

NETRF welcomes proposals addressing GI and pancreatic NETs and continues to have a special interest in lung NETs. Grants are open to researchers anywhere in the world.

Elyse Gellerman, NETF CEO

“Our understanding of the cause and growth of neuroendocrine tumors lags behind other types of cancers,” said Elyse Gellerman, NETRF chief executive officer. “NETRF is looking for transformative projects that accelerate discovery and have the potential to improve treatments.”

Interested applicants must submit a letter of intent online by June 17, 2019. From that pool, investigators with the most promising and transformative ideas will be invited to submit full proposals. Proposals are selected using a rigorous peer review process, which includes external expert reviewers and NETRF’s Board of Scientific Advisors. Grant awardees are notified in late 2019.

In 2018, NETRF funded 15 research studies with a combined value of $4.4 million. Awards were granted to investigators in the United States, Canada, Netherlands, Australia, and Switzerland.

NETRF is the largest private funder of NET research. Since 2005, NETRF has funded $22 million in scientific research grants to expand the molecular understanding of NETs and help drive personalized treatment options for patients. Learn how to apply. 

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Developing a NET Cell Line

NETRF & Broad Institute Work to Fill Research Void

The lack of publicly available, reliable NET cell lines is a barrier in neuroendocrine tumor research, and a new collaborative program between the Neuroendocrine Tumor Research Foundation and Broad Institute of MIT and Harvard University aims to change that.

Cell lines are used as a laboratory model to understand the genomics of tumors, test drugs for effectiveness, and identify vulnerabilities to kill cancer cells. They are fundamental research tools used in every type of cancer research. The lack of reliable NET cell lines holds back meaningful research in this rare tumor type.

The NETRF/Broad Institute Cell Line Project aims to create publicly available tumor cell lines to be shared with any researcher, in any laboratory, anywhere in the world. This project is a new approach to a problem NETRF has been trying to solve. Having a reliable NET cell line could expedite our molecular understanding of NETs and accelerate drug testing.

Innovative solution for longstanding problem

The Broad Institute has developed a Cancer Cell Line Factory over the past five years, using the latest technology to grow patient tumor samples into cancer cell lines, including some rare cancers. Researchers at the Broad will apply what they have learned to the task of developing neuroendocrine cell lines.

“This new collaboration with the Broad is an ongoing partnership to provide the sustained resources needed to make the project a success,” said Elyse Gellerman, NETRF Chief Executive Officer. “To create a viable, verifiable NET cell line, a laboratory needs sustained financial support and ongoing tumor tissue donations.

“We’re thrilled about this new partnership,” said Jesse Boehm, Scientific Director of the Broad’s Dependency Map Initiative. “For years the absence of NET cell models has hampered translational research. With this new effort, we’re empowering patients anywhere to donate living pieces of their tumors to help us crack this historically challenging problem.”

NET tissue samples needed

For more than a year, NETRF and pattern.org have been working to collect initial neuroendocrine tissue samples. Samples already submitted include lung NETs, pNETs, and intestinal NETs. The goal is to collect as many as 18 high quality tumor tissue samples to enable Broad researchers to work towards creating cell lines for six NET types. The first phase of the project partners with patients in the U.S. and Canada to obtain excess tumor tissue from surgeries and biopsies to create NET cell lines.

Why the Broad Institute?

Gellerman is confident that the Broad is up to the task as an interdisciplinary research institute that focuses on cancer genomic analysis, interpretation, and mapping. Broad Institute has successfully created more than 300 cancer cell lines, including over 40 for rare cancers. “A project of this scale not only needs advanced DNA and RNA sequencing but vast screening libraries and sophisticated data processing to analyze and interpret the almost limitless data generated during sequencing,” said Gellerman.

How do you create a NET cell line?

Researchers at the Broad will use a structured, scientific approach to develop and grow the cell lines. They will be analyzed and validated in the laboratory for integrity, accuracy, and purity before replication. Once a NET cell line’s success is validated using standardized criteria for authentication, a portion of the samples will be preserved (by freezing), and others will be circulated as molecularly characterized cell models for study in laboratories around the world.

What can be done with a successful NET cell line?

If one or more validated NET cell line can be created, the Broad Institute will be able to test NET treatments. The Broad team will screen a comprehensive library of 6,125 drug compounds on any NET cell lines. To overcome the time-consuming task of individually testing drugs on samples, the Broad uses bar-code systems to test pools of 25-500 cell lines at the same time. This expedited approach can determine whether any existing drugs not currently used to treat NETs can kill the NET cells. Using the massive amounts of data collected from comprehensive DNA and RNA sequencing of tumors, scientists will try to isolate genomic alterations responsible for promoting and maintaining tumor growth. NETs are highly diverse. Genomic alterations have been discovered, such as MEN1, DAXX, ATRX, CDKN1B, and others. But scientists don’t yet understand the role these alterations play in the development or advancement of disease.

Broad Institute scientists will map the cellular changes that occur when NET tumors form and grow. This “NET Dependency Map” will use information from the sequencing of NET cell lines, existing data sets, and predictive modeling software to identify a list of likely targets that, upon therapeutic intervention, could lead to NET cell death.

How to donate tumor tissue for the project

If you or a NET patient you know has an upcoming surgery, you can visit pattern.org to learn more about the project. Pattern.org links to an electronic consent form where patients can provide consent if they wish to contribute tissue. Should a patient decide to provide consent, pattern.org arranges for excess tumor tissue to be collected at the hospital and shipped to Broad’s Cancer Cell Line Project Research Lab. There is no cost to the patient or the healthcare institution.

If you wish to learn more, contact Barbara Van Hare at barbara@rcrf.org, coordinator for the pattern.org tissue sample collection program.

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New Mentored Award to Help Launch NET Careers

The Neuroendocrine Tumor Research Foundation (NETRF) announces a new NETRF Mentored Award for early career researchers, supported by Ipsen. The two-year grant for those in post-doctoral, fellowship, residency, or equivalent positions supports basic, translational, or clinical research intended to advance our understanding of neuroendocrine neoplasms to develop more effective treatments.

“Recruiting new investigators to study NETs is essential to growing our knowledge base,” said Elyse Gellerman, NETRF Chief Executive Officer. “The Mentored Award fills an important role in our research portfolio by helping to recruit and nurture early career investigators. We are proud to have Ipsen’s support for this program.”

“Ipsen is committed to the advancement of science and medical research to deliver better outcomes for patients living with NETs. We are excited to support early career investigators and the new thinking that could lead to breakthroughs in disease areas with high unmet needs,” said Sotirios Stergiopoulos, Chief Medical Officer at Ipsen.

Researchers will be able to apply for the first NETRF Mentored Award when the Neuroendocrine Tumor Research Foundation announces its 2019 Request for Applications later this spring. Applications will be peer-reviewed through NETRF’s grantmaking process.

“Research is more competitive than ever, and early career scientists need funding,” said Daniel Chung, MD, co-chair, NETRF Board of Scientific Advisors. “This award puts us at the right place, at the right time, to attract qualified, promising scientists and clinicians to the study of NETs.”

Early career researchers are about to transition out of training and into independent positions as investigators, faculty members, or clinical researchers. It is at this point that early career researchers focus on establishing themselves as experts in a chosen area.

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About NETRF

The Neuroendocrine Tumor Research Foundation (NETRF) is dedicated to funding research to discover cures and more effective treatments for neuroendocrine cancers. Since its inception in 2005, NETRF has awarded over $22 million in large-scale, multi-year grants to leading scientists at renowned research institutions around the world. Grants are made possible by the generous support of individuals, families, and foundations dedicated to advancing NET research. 

About Ipsen

Ipsen is a global specialty-driven biopharmaceutical group focused on innovation and Specialty Care. The group develops and commercializes innovative medicines in three key therapeutic areas – Oncology, Neuroscience and Rare Diseases. Its commitment to Oncology is exemplified through its growing portfolio of key therapies for prostate cancer, neuroendocrine tumors, renal cell carcinoma and pancreatic cancer. Ipsen also has a well-established Consumer Healthcare business. Ipsen’s R&D is focused on its innovative and differentiated technological platforms located in the heart of the leading biotechnological and life sciences hubs (Paris-Saclay, France; Oxford, UK; Cambridge, US). The Group has about 5,700 employees worldwide. Ipsen is listed in Paris (Euronext: IPN) and in the United States through a Sponsored Level I American Depositary Receipt program (ADR: IPSEY). For more information on Ipsen, visit http://www.ipsen.com.

NETRF’s Funded Research

Board of Scientific Advisors

NETRF’s Research Symposium

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