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When Dr. John Marshall first started treating patients with pancreatic cancer nearly 30 years ago, the goal of treatment was to extend a patient’s life; the quality of the patient’s life was a secondary consideration. Despite some gains in survival for pancreatic cancer, the survival rate is still in the single digits; currently 8.5 percent of patients are alive five years after diagnosis. While research to improve treatment options continues, quality of life has become increasingly important.

“Patients want to be tough and compliant with their treatment because they want their cancer to go away,” said Marshall, Director, The Ruesch Center for the Cure of Gastrointestinal Cancers, at Lombardi Comprehensive Cancer Center, Georgetown University Medical Center. “But if their treatments are preventing them from enjoying life, they may need to reconsider their options.”

DR. JOHN MARSHALL

DR. JOHN MARSHALL, DIRECTOR OF THE RUESCH CENTER FOR THE CURE OF GI CANCERS, HAS SEEN QUALITY OF LIFE BECOME INCREASINGLY MORE IMPORTANT IN MAKING PANCREATIC CANCER TREATMENT DECISIONS.

The management of cancer is a continuum, and priorities can change between a focus mostly on treatment effectiveness to a greater emphasis on quality of life, according to Marshall. “Doctors aren’t good at documenting quality of life,” Marshall said. “We need to be better at focusing on the specific aspects that are most relevant to patients with pancreatic cancer.”

Doctors struggle for a couple of reasons. First, while survival can be objectively measured in months and years, quality of life is determined by subjective perceptions of physical, emotional, social and cognitive aspects of a patient’s life. Many doctors do not collect this sort of data because it is difficult to measure, especially in a busy medical practice.

Additionally, according to Dr. Marshall, each patient has a unique set of priorities. Some patients want to live longer, no matter what it takes; others may prioritize the quality of the remaining time they have.

Multiple factors affect quality of life, including symptoms and comorbidities associated with the disease. Sometimes it can be difficult to tell the difference, according to Dr. Michael Pishvaian, an assistant professor in the hematology/oncology division at MedStar Georgetown University Hospital and Lombardi Comprehensive Cancer Center.

“Pancreatic cancer is a miserable disease that causes a tremendous number of symptoms,”  Pishvaian said. Symptoms include loss of appetite, weight loss, back or belly pain, nausea, vomiting, diabetes and more.

Many patients expect pain or discomfort when being treated for cancer and sometimes suffer in silence. But when doctors know about their patients’ issues, they can often provide solutions. Doctors should be diligent about asking the right questions and encouraging their patients to respond honestly, reporting how they feel on both good and bad days throughout their treatment, according to Pishvaian.

Experts suggest there are a few ways patients and physicians can ensure that quality of life will be a consideration during treatment. First, communication is key to maintaining quality of life.

“As patients go through their diagnosis and treatment for pancreatic cancer, things continually change, making the need for information that much greater,” said Julie Fleshman, JD, MBA, president and chief executive officer of the Pancreatic Cancer Action Network. “Patients need to not only communicate their needs with the people who are supporting them, but also advocate for themselves by asking for the latest information on treatment options, clinical trials and support resources.”

Secondly, patients who feel that their doctors respect them and are treating them as “whole people” report a higher quality of life. Finally, doctors do not need to care for their patients alone; they can help their patients assemble a team that includes a nutritionist, a psychiatrist and others to provide comprehensive support for their patients.

Given the extent to which pancreatic cancer affects quality of life for patients, doctors need to be proactive in managing their disease, according to Marshall. “That might mean seeing them more often than you would see patients with other cancers. It might mean seeing them every other week or more, depending on how that patient is responding to treatment.”

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More people are being diagnosed with—and dying from—pancreatic cancer, due to an aging population and rising rates of risk factors such as obesity. As a result, costs for treating this disease are on the rise.

Incremental improvements in treatment have been made, but progress remains slow, so pancreatic cancer still carries a poor prognosis. Dr. Hani Babiker, a pancreatic cancer specialist at The University of Arizona Cancer Center, offers his thoughts on the meaning of value in pancreatic cancer care – for which survival rates are low – and how the value of care could be improved.

How do you define value in cancer care?

“I define value as pushing ourselves to deliver more comprehensive approaches to providing care for our patients. That means addressing all patient issues and concerns related to their cancer.

With my patients, I discuss not only treatment options and goals but also what foods, vitamins and supplements can help them manage their disease. I refer my patients to social workers who can help them deal with the stress that can accompany a cancer diagnosis. A palliative care physician in our clinic helps patients to control symptoms such as pain, nausea and vomiting. We focus on treating the whole patient. That’s how I seek to provide the best value.”

DR. HANI BABIKER

DR. HANI BABIKER, A PANCREATIC CANCER SPECIALIST AT THE UNIVERSITY OF ARIZONA CANCER CENTER, BELIEVES DOCTORS AND PATIENTS SHOULD FOCUS ON THE OVERALL VALUE THAT TREATMENTS PROVIDE.

Does the definition of value change for cancers with low survival rates and few treatment options, such as pancreatic cancer?

“Absolutely. It is difficult to compare the value of treatments across all cancer patients; the options and goals are not the same.

We should not deprive pancreatic cancer patients of the most effective treatment options for their particular disease because their prognosis is not as good as patients with other cancers. But when the quantity of life we can offer patients is short, quality of life becomes an increasingly important factor to the value we provide.

Most people with pancreatic cancer experience pain, and I’ve seen firsthand how chemotherapy has helped patients manage that pain.”

Why has progress in pancreatic cancer lagged behind other cancers?

“It is an inherently unique disease. The microenvironment surrounding pancreatic cancer tumors creates a barrier that is difficult for therapies to penetrate. It also suppresses the body’s immune cells that would typically hunt down and eliminate cancer cells. We still have a ways to go in understanding and treating this disease better.”

If we can identify pancreatic cancer earlier, by screening people who are at high risk because of their family or medical history or genetic predisposition, we can potentially treat more patients using the Whipple procedure. We may provide better outcomes and, therefore, may deliver better value, even though hospitalizations and surgeries are expensive.

So how can we continue to improve the value of pancreatic cancer care?

“Pancreatic cancer is tough to diagnose. We usually see patients who are in advanced stages, when the disease has spread beyond the pancreas. As a result, only 20 percent of patients diagnosed are eligible for a surgery known as the Whipple procedure, in which doctors remove the cancerous part of the pancreas. Surgery gives appropriate patients the best chance for a cure.

If we can identify pancreatic cancer earlier, by screening people who are at high risk because of their family or medical history or genetic predisposition, we can potentially treat more patients using the Whipple procedure. We may provide better outcomes and, therefore, may deliver better value, even though hospitalizations and surgeries are expensive.”

What role do innovative therapies play in reducing hospitalizations and improving outcomes?

“Surgery gives patients the best chance for a cure, but less than 20 percent of patients live at least five years after their operation. This statistic highlights the fact that most pancreatic cancers have spread and cannot be cured through surgery alone.

Doctors are now using chemotherapy before and after surgery to improve outcomes in pancreatic cancer. And we are seeing more therapies being developed that will continue to improve survival and, one day, reduce the need for costly hospitalizations and surgeries. In the future, the best way to add value for pancreatic cancer patients will be to invest in better screening and to continue funding research into more treatment options.”

Learn more about how screening in individuals at risk for pancreatic cancer can help to save lives: read “Family History Helped This Survivor Catch Pancreatic Cancer Early.”

Over the past year, doctors have seen promising results from studies investigating new treatment approaches using chemotherapy for patients with pancreatic cancer, a disease that remains among the deadliest of cancers. Yet 38 percent of pancreatic cancer patients received no treatment at all within one year of diagnosis, according to study findings.

“Those results are not surprising as therapy for pancreatic cancer is rarely curative,” said Gabriela Chiorean, MD, a gastrointestinal oncologist and researcher at the University of Washington. “Most pancreatic cancers are diagnosed at a stage where the goal is to prolong survival—not to cure the disease. Some physicians and patients may be less willing to choose treatment because of that.”

Chiorean believes that more patients with pancreatic cancer could benefit from and should be offered treatment for their disease. During this year’s Pancreatic Cancer Awareness Month, Chiorean is raising awareness of both this issue and the progress that’s been made in pancreatic cancer treatment.

The Harsh Reality of Pancreatic Cancer

Gabriela Chiorean, MD

GABRIELA CHIOREAN, MD, FROM THE UNIVERSITY OF WASHINGTON BELIEVES THAT DOCTORS SHOULD NOT GIVE UP ON PATIENTS WITH PANCREATIC CANCER BY NOT DISCUSSING THEIR TREATMENT OPTIONS.

While the statistics may seem dismal, they are improving. From 1993 to 2013, while the median overall survival for metastatic pancreatic cancer patients remained steady, more patients achieved long-term survival—defined as a year or longer. According to Chiorean, these survivors were diagnosed at a younger age and may have been more likely to receive treatment.

Chiorean believes that survival rates would further improve if more patients were offered treatment. But as research point out—many patients do not receive treatment. Chiorean’s personal experience backs the study findings; she frequently sees patients who were not offered treatment in other centers and are looking for a second opinion.

Another reason patients may not receive treatment is that pancreatic cancer is difficult to diagnose. As a result, 80 percent of patients are diagnosed at an advanced stage when curative treatments are not an option. By the time the cancer is detected, oncologists may be hesitant to offer treatment because they fear their patients are too fatigued or ill, and unable to tolerate treatment regimens, according to Chiorean. It may be the physician’s intent to relieve stress on both the patients and their caregivers.

Even more challenging, pancreatic cancers can only be removed less than 15 percent of the time. “If you can’t take it out of the body, eventually it will start spreading unless it has already spread,” Chiorean said.

Managing treatment toxicities and a patient’s quality of life can also make a difference, according to Chiorean. She tries to prevent side effects by adjusting treatment dosing as needed and continuously asks patients how they are feeling before each treatment.

“That’s where the art of medicine comes into play,” she said. “We’re not treating everyone the same.”

Early Screening for Pancreatic Cancer

Pancreatic cancer can present with broad gastrointestinal symptoms that can be diagnosed as peptic ulcer disease or irritable bowel syndrome, and sometimes it presents with new diabetes. “A clinician might treat patients for indigestion for a year, and then ultimately diagnose them with late-stage pancreatic cancer,” Chiorean said. “If a patient is losing weight and has new onset diabetes, they should be screened with an ultrasound or CT scan for pancreatic cancer.”

Researchers are working on ways to catch pancreatic cancer earlier. Imaging techniques to detect premalignant cystic neoplasms, and other benign conditions that may be precancerous, are being explored, as are biopsies followed by regular ultrasound screening for high-risk patients, including those with a family history of pancreatic cancer.

We’re learning more about the disease and can offer treatment options that allow patients to feel comfortable for as long as possible.

Pancreatic Cancer Care Is an Uphill Battle

Improving care for pancreatic cancer remains a struggle. The pancreas has limited blood supply, making it difficult for medications to penetrate it. But new treatment strategies are making in-roads. New therapy combinations are being used before and after surgery for patients with pancreatic cancer, and new approaches are being explored in clinical trials to make chemotherapy less intensive for some patients. Chiorean recommends clinical trials of pancreatic cancer treatments for eligible patients.

“Despite the statistics, there’s definitely hope in the future of pancreatic cancer treatment,” said Chiorean. “We’re learning more about the disease and can offer treatment options that allow patients to feel comfortable for as long as possible.”

To learn more about the patient experience with pancreatic cancer, read “Facing Each Day with Pancreatic Cancer, Hand-in-Hand.”

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Pancreatic cancer is once again an area of focus at this year’s American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago. New research is increasingly important as estimates show that the mortality rate of pancreatic cancer could surpass that of breast and colorectal cancers by 2030 in some countries. Celgene is at the forefront of the fight against pancreatic cancer, and at this year’s ASCO conference, new data will continue to expand our understanding of emerging investigational treatments.

Celgene continues the fight against pancreatic cancer through our commitment in advancing research, our collaboration with advocacy groups and our support to patients.

Some look. We envision.

Celgene is committed to advancing research to help change the lives of patients with pancreatic cancer. In 2017, more than 20 percent of our revenue was reinvested into R&D, one of the highest rates in the industry.

Part of our research aims to inform today’s treatment choices in pancreatic cancer. Given the availability of more treatment options for patients with metastatic pancreatic adenocarcinoma, it is time to develop a treatment plan for patients. Celgene is contributing to this important discussion by helping physicians and patients make informed treatment decisions. With an eye toward the future, we are also conducting research and collaborating with researchers around the world on 91 ongoing investigational trials that combine novel agents with the foundation of approved Celgene therapies. These trials involve more than 40 unique novel compounds across more than 30 mechanisms of action and target enrollment of more than 4,500 pancreas cancer patients.

Celgene: Your partner in the fight against pancreatic cancer.

Some hear. We listen.

Celgene collaborates with patient advocacy groups to bring hope to the fight against pancreatic cancer. In partnership with 29 international patient groups, Celgene created the first-ever World Pancreatic Cancer Day in 2014 and continues to grow the event. Celgene also supports events such as Purple Stride Walks in the United States, the European Multi-Stakeholder platform on Pancreatic Cancer in November 2014, 2015 Pancreatic Cancer Forum in Milan and grants to help transport patients to their treatment appointments through the CancerCare GetYouThere program.

Some touch. We feel.

Celgene is dedicated to offering compassion and support to patients with pancreatic cancer and those who care for them. To help them, Celgene developed NavigatePanc.com, a personal pancreatic cancer information center. The site provides information about the disease, clinical trials, support groups, finances and communication and allows patients and caregivers to create their own online libraries of relevant information. Celgene also recognizes that pancreatic cancer patients often have special nutritional needs due to compromised pancreatic function. Our response: a source for recipes and meal planning. Lastly, we are committed to increasing the awareness of pancreatic cancer in the healthcare community.

Pancreatic Cancer: Cooking. Comfort. Care.

We support all who fight pancreatic cancer.

Celgene is committed to providing information and support to people with pancreatic cancer, and their loved ones, to help them in making informed decisions throughout their journey.

To learn more:

As trained pharmacists, Jann Skelton and her late husband, David, spent their lives helping patients and caregivers. But when David was diagnosed with pancreatic cancer in 2012, the tables turned. “For the first time, we were in the shoes of the patients and the caregivers,” Skelton said.

5 Tips for Caregivers to Avoid Feeling OverwhelmedWhile Skelton’s background helped her manage the medical aspects of her husband’s care, dealing with the stress and emotions were more difficult. Like most caregivers, Skelton had to figure out how to take care of her own needs so that she could effectively care for her husband while also caring for her young children.

While the average age at diagnosis for pancreatic cancer is 71, David was just 49. They were raising two children, who were 8 and 11 at the time. Jann had a health care consulting business, which required her to travel often, and an ambitious five-year plan for her family and career.

“Pancreatic cancer laughed mightily at that plan,” she said. “To focus on caring for my husband and our kids, I shut down my work and volunteering with the school and my church. I’ve never had a situation with so much stress.”

Skelton isn’t alone in facing this high burden. Cancer caregivers spend an average of 33 hours a week caring for their loved one with cancer. Half of cancer caregivers have high levels of emotional stress and 62 percent of them report being in a high burden situation.

WHEN JANN SKELTON’S HUSBAND WAS DIAGNOSED WITH PANCREATIC CANCER, SHE MADE SURE TO TAKE CARE OF HERSELF AND ACCEPT HELP FROM OTHERS WHILE CARING FOR HIM.

WHEN JANN SKELTON’S HUSBAND WAS DIAGNOSED WITH PANCREATIC CANCER, SHE MADE SURE TO TAKE CARE OF HERSELF AND ACCEPT HELP FROM OTHERS WHILE CARING FOR HIM.

Put on Your Mask First

50% of cancer caregivers experience high levels of emotional stress. Much like airplane passengers are instructed to put on their oxygen mask first before helping others, caregivers need to take care of themselves first. “If you’re taking even the most basic care of yourself, you will be a better caregiver,” she said.

Skelton’s friends and extended community stepped in. Sometimes another parent would bring her son home from soccer or stay at the house while she went grocery shopping. They provided her with breaks so she could go to yoga class. Doing yoga a few times a week gave her an hour to think about nothing.

It was difficult for Skelton to take a break sometimes because she felt she was the family lynchpin. She managed her husband’s feeding tubes and helped him with daily activities such as bathing and dressing.

“It was hard to go to a yoga class when I knew he might have felt better if I didn’t,” she said. “Sometimes I went anyway. It was something I just needed for myself.”

Sometimes you don’t realize the circle you have until something bad happens. I didn’t realize I had that circle.

Realize You Have a Circle

Signs of StressPeople came out of the woodwork to help Jann and her family during this difficult time, partly because the Skeltons were honest and open about David’s pancreatic cancer diagnosis and the family’s situation—a tactic she recommends. People want to help; if they know there’s a need, they’ll fill it.

“That was an amazing gift,” Skelton said. “I didn’t realize the circle I had until something bad happened.”

It took Skelton a while to know what she needed, and then to be comfortable telling people who asked. “If you don’t answer, they’re going to do what they think you need. It’s better to give some positive direction,” she said.

She tells caregivers to make a list of what would be helpful and what causes the most stress, no matter how small. Maybe you need your doorknob fixed or your laundry or yard work done. If someone asks, pull out the list and let them pick.

DAVID SKELTON WAS JUST 49 AND IN THE MIDST OF RAISING TWO CHILDREN WHEN HE WAS DIAGNOSED WITH PANCREATIC CANCER.

DAVID SKELTON WAS JUST 49 AND IN THE MIDST OF RAISING TWO CHILDREN WHEN HE WAS DIAGNOSED WITH PANCREATIC CANCER.

Make a Standing Appointment

The day her husband was diagnosed, Skelton called a counselor to talk. She knew caregiving could lead to depression or anxiety, which can be exacerbated by exhaustion. For two years, she kept a standing weekly appointment for herself and her kids, depending on who needed it most. Her husband also saw a counselor, sometimes with Skelton.

“Your friends want to help you, but they can’t understand, and you’d never want them to,” she said. “The counseling time helped me think through how to manage the situation and not to get lost in ‘what if’ thinking about the future.”

Skelton also found a group of young widows who were her support system after her husband passed. “To find people nearby with the same life experience is stabilizing. You feel like you’re not out there in the deep end,” she said.

It’s still difficult for Skelton to talk about her husband’s passing. But she believes that her experience of being a caregiver has set an example for her kids — as well as for other cancer caregivers — that no matter what they are going through, they never have to go it alone. Five years later, she and her kids still feel enveloped by their community.

To read more about working together to cope with a pancreatic cancer diagnosis, see “Facing Each Day with Pancreatic Cancer, Hand-in-Hand.”

Although blood cancers are relatively rare, their root causes may not be so different from those of other cancers. And since blood cancer samples may be more easily accessible than solid tumor samples, it can help research efforts and make excellent models for research.

DR. LOUIS DEGENNARO, PRESIDENT AND CHIEF EXECUTIVE OFFICER OF THE LEUKEMIA & LYMPHOMA SOCIETY, EXPLAINS HOW ADVANCES IN BLOOD CANCER HAVE IMPROVED TREATMENT IN OTHER CANCERS.

DR. LOUIS DEGENNARO, PRESIDENT AND CHIEF EXECUTIVE OFFICER OF THE LEUKEMIA & LYMPHOMA SOCIETY, EXPLAINS HOW ADVANCES IN BLOOD CANCER HAVE IMPROVED TREATMENT IN OTHER CANCERS.

“We’re able to make faster progress in blood cancer because we’re studying the real cancer in the patient,” said Louis DeGennaro, president and CEO of the Leukemia & Lymphoma Society. “When you draw a leukemia patient’s blood sample, you have an exact representation of their cancer. That’s not the case in solid tumors, where you’d have to manipulate and grow the cells in a lab to study them.”

That’s why the LLS is especially focused during Blood Cancer Awareness Month on raising awareness of this second leading cause of cancer death in the United States (behind only lung cancer).

Blood cancer is actually a family of over 140 distinct diseases that affect blood cells, acting as “bullies” within the circulatory and immune systems. These abnormal blood cancer cells typically grow more quickly and survive longer than normal, interfering with the production and functioning of healthy cells.

Like all families, though, blood cancers have their differences. Lymphoma, leukemia, multiple myeloma and myelodysplastic syndromes (MDS), four major types of blood disorders, affect specific cell types in particular neighborhoods of the body. For instance, lymphoma alters white blood cells in the lymphatic system, while multiple myeloma disturbs plasma cells in the bone marrow.

These four diseases branch out into further subtypes. Leukemia comprises acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), chronic myeloid leukemia (CML) and chronic lymphocytic leukemia (CLL); lymphoma includes over 60 different forms. The distinction between all those subtypes lies partly in the specific cell type impacted. But scientists are learning that commonalities are more critical than distinctions.

“When it comes to treating cancer, we’re beginning to understand that the kind of cell affected is not the most important aspect,” DeGennaro said. “It’s the underlying mutations and mechanisms—which are shared by many types of cancer—that matter more.”

For instance, researchers have found mutations in a tumor-suppressor gene called TET2 in multiple blood cancers, suggesting it plays a role in how blood cells are regulated in the body. But even beyond blood cancer, the TET gene family has also been linked to breast, liver, lung, pancreatic and prostate cancers.

Blood Cancer's Family Tree

Their commonalities may mean medical advances in one blood cancer could provide insights into others.

An example is a class of therapies called tyrosine kinase inhibitors (TKIs), which have nearly doubled the five-year survival rate for CML since they were introduced 15 years ago. Today, TKIs have been approved to treat many other diseases, including lung, thyroid, kidney and breast cancers.

Roots of Care: Multiple Myeloma

“Blood cancer research is paying dividends to other cancers and diseases, and that will only continue as we learn more about these diseases,” said DeGennaro.

To learn how you can help the Leukemia & Lymphoma Society in supporting blood cancer research, read “Why I’m Walking in Light The Night® This Year.”

CAROLYNN KIEL’S PANCREATIC CANCER WAS DETECTED EARLY BECAUSE SHE WAS AWARE OF HER FAMILY’S HISTORY WITH THE DISEASE AND HAD ANNUAL SCREENINGS.

CAROLYNN KIEL’S PANCREATIC CANCER WAS DETECTED EARLY BECAUSE SHE WAS AWARE OF HER FAMILY’S HISTORY WITH THE DISEASE AND HAD ANNUAL SCREENINGS.

After Carolynn Kiel lost her mother and sister to pancreatic cancer within the same year, her doctor recommended she get screened annually for an early detection marker for the disease. Even though she thought her physician was being overly cautious, she decided it was better to be safe than sorry. One year later, that screening resulted in an early diagnosis of pancreatic cancer that she believes helped save her life.

What many people don’t realize is that 10 percent of pancreatic cancer patients have a family history of the disease. In fact, the risk of developing pancreatic cancer more than doubles if a person’s mother, father or sibling had the cancer. Now, 13 years after her diagnosis, Carolynn wants to help raise awareness of how screening in high-risk individuals can help save lives, by sharing her family’s journey with pancreatic cancer.

When did pancreatic cancer first impact your family?

My sister Marilyn was diagnosed with pancreatic cancer in 2000. She was 58 years old, 11 months younger than me, and had flu-like symptoms that wouldn’t clear up. At the time, pancreatic cancer was a mystery to our family. The only person we knew who had pancreatic cancer was Michael Landon of Little House on the Prairie. Then my mother was diagnosed with pancreatic cancer about a year later after we noticed she was losing significant weight. My mom’s cancer was more advanced than my sister’s when she was diagnosed, so she lived only about two months after diagnosis. Then, just a few weeks later, my sister died as well.

Did that family history with pancreatic cancer change how you managed your health?

I thought our family was done with pancreatic cancer, but my primary care doctor said I should start getting tested annually for an early marker of pancreatic cancer called CA19-9. So I first got a blood test done looking for early signs in April 2003. That test came back negative. A year later, the CA19-9 marker came back positive, and a follow-up endoscopy led to my diagnosis of pancreatic cancer. I was mad. I said, “This isn’t fair!” I couldn’t believe that this disease affected the lives of so many people in one family.

CAROLYNN KIEL’S MOTHER (PICTURED ABOVE) WAS DIAGNOSED WITH PANCREATIC CANCER IN 2001 AND PASSED AWAY ABOUT TWO MONTHS LATER. HER DEATH SPURRED KIEL TO BEGIN ANNUAL PANCREATIC CANCER SCREENING, WHICH RESULTED IN AN EARLY DIAGNOSIS.

CAROLYNN KIEL’S MOTHER (PICTURED ABOVE) WAS DIAGNOSED WITH PANCREATIC CANCER IN 2001 AND PASSED AWAY ABOUT TWO MONTHS LATER. HER DEATH SPURRED CAROLYNN TO BEGIN ANNUAL PANCREATIC CANCER SCREENING, WHICH RESULTED IN AN EARLY DIAGNOSIS.

How did that early diagnosis affect your treatment?

We caught the disease early, so I was lucky to be a candidate for surgery. It is called the Whipple procedure. Only 20 percent of patients are eligible for the surgery. I was “lucky,” but that doesn’t mean the treatment was easy. The Whipple procedure is like going to hell, but you get to come back. It’s brutal. Getting through it requires a positive attitude and determination. I needed people to talk to, people who were going through the same thing as I was, and I found a pancreatic cancer support group. It made a significant difference in my life. So now, 13 years later, having survived my battle with pancreatic cancer, I make the time to talk with any pancreatic cancer patient who needs someone.

Do your other family members get screened for pancreatic cancer annually?

I worry about my daughter and sister. They’re tested once a year with the CA19-9 blood test and get annual checkups. With any cancer, early detection is the most important thing. Pancreatic cancer is so sneaky that by the time you have the symptoms, you’re already far along. The CA19-9 test isn’t something that’s included with regular blood work, so it’s important to check for it if you have a family history of pancreatic cancer. The CA19-9 marker is not perfect, but it is elevated in most people with pancreatic cancer. It’s one of the best things that we have right now for early detection.

CAROLYNN KIEL (FAR LEFT) AND HER FAMILY HAVE BEEN IMPACTED BY PANCREATIC CANCER. HER SISTER MARILYNN (LEFT) AND HER MOTHER (RIGHT) BOTH PASSED AWAY FROM THE DISEASE IN 2002. HER DAUGHTER STACY (FAR RIGHT) GETS ANNUAL SCREENING FOR THE DISEASE.

CAROLYNN KIEL (FAR LEFT) AND HER FAMILY HAVE BEEN IMPACTED BY PANCREATIC CANCER. HER SISTER MARILYNN (LEFT) AND HER MOTHER (RIGHT) BOTH PASSED AWAY FROM THE DISEASE IN 2002. HER DAUGHTER STACY (FAR RIGHT) GETS ANNUAL SCREENING FOR THE DISEASE.

There are ongoing studies and registries for individuals with a family history of pancreatic cancer to understand the genetic components of this disease better. Have you participated in any of these?

My daughter, sister and I had blood work sent to the National Familial Pancreatic Tumor Registry at Johns Hopkins probably 12 years ago. The information and blood work will help researchers determine the genetic and non-genetic risks for pancreatic cancer. It may help improve early detection, so more people can have a better shot of surviving like I did. I want to do anything that helps others. My attitude is that if there’s a slight chance it will help, then I will do it. What would stop anyone from helping out if they could?

What advice do you give people who are newly diagnosed with pancreatic cancer?

I tell people who are newly diagnosed to get a second opinion about their proposed treatments and even about their diagnosis. I also pass along advice given to me by my surgeon, which is not to go to a neighborhood hospital or a general surgeon for a Whipple procedure. Go to a surgeon who specializes in Whipple procedures. I also tell those same people to make sure their children and siblings get annual screenings. Early detection helps a lot with this disease.

To learn more about how patients cope with pancreatic cancer, read “Facing Each Day with Pancreatic Cancer, Hand-in-Hand.”

This past November 17, Celgene employees all over the world showed how they were “in it together” with the pancreatic cancer community in many different and unique ways during World Pancreatic Cancer Day 2016. From postcards to tango performances, team members did their part to raise awareness about this deadly disease, which took the lives of an estimated 359,000 people worldwide last year.

Celgene employees in Korea wore purple scarves and clothing to commemorate World Pancreatic Cancer Day 2016.

CELGENE EMPLOYEES IN KOREA WORE PURPLE SCARVES AND CLOTHING TO COMMEMORATE WORLD PANCREATIC CANCER DAY 2016.

For Celgene employees in Korea, the day served as a reminder that pancreatic cancer is the fifth most common cancer in their country. Purple is the internationally recognized color for pancreatic cancer awareness, and employees decided to make a fashion statement for a good cause by wearing purple scarves and clothing. Purple cookies and drinks were served to team members, and purple ribbons decorated the entryway of the company’s location.

Celgene employees in Slovakia leveraged a little celebrity power, asking famous singers and artists to sign postcards to show their support.

Meanwhile, Celgene employees in Slovakia leveraged a little celebrity power, asking famous singers and artists to sign postcards to show their support. Slovakia has the second highest pancreatic cancer incidence in the world, with 9.4 men and women per 100,000 diagnosed each year, so raising awareness is particularly important there. Even Slovakia’s President, Andrej Kiska, recognized the significance and signed one of these postcards, which were delivered to the Health Committee in the Slovak Parliament.

CELGENE ITALY PROMOTED THEIR WORLD PANCREATIC CANCER DAY ACTIVITIES WITH A TWEET THAT READ “@CELGENE#ITALY # WPCD #PANCREATIC CANCER DAY #FOR A FUTURE WORTHY OF NOTE# TO EMPOWER PATIENTS WITH THE FLAMENCOTANGONEAPOLIS PERFORMANCE.”

In Italy, Celgene employees decided to kick up their heels on the dance floor on World Pancreatic Cancer Day. In collaboration with a local group of musicians and dancers known as Flamenco Tango Neapolis, Celgene staged a free performance at the Teatro Sannazzaro of Naples where they distributed information about pancreatic cancer to raise awareness.

Celgene Switzerland provided employees with purple wristbands to commemorate World Pancreatic Cancer Day.

CELGENE SWITZERLAND PROVIDED EMPLOYEES WITH PURPLE WRISTBANDS TO COMMEMORATE WORLD PANCREATIC CANCER DAY.

In Switzerland, where the five-year survival rates remain low, Celgene employees hit the streets with their message about pancreatic cancer. They wore purple wristbands to show their solidarity with patients and participated in educational meetings for the general public and physicians about the disease.

Celgene Switzerland employees raised awareness of pancreatic cancer on social media during World Pancreatic Cancer Day 2016.

CELGENE SWITZERLAND EMPLOYEES RAISED AWARENESS OF PANCREATIC CANCER ON SOCIAL MEDIA DURING WORLD PANCREATIC CANCER DAY 2016.

As with many other European countries, the incidence of pancreatic cancer in France has been increasing over the past two decades. Celgene employees worked with the Aide et Recherche en Cancérologie Digestive Foundation to educate journalists, the public and medical professionals on the importance of World Pancreatic Cancer Day.

Celgene Brazil designed and distributed flyers that highlighted the burden of pancreatic cancer during World Pancreatic Cancer Day 2016.

DURING WORLD PANCREATIC CANCER DAY 2016, CELGENE BRAZIL DESIGNED AND DISTRIBUTED FLYERS THAT DREW ATTENTION TO FACTS SUCH AS “PANCREATIC CANCER IS THE 4TH DEADLIEST CANCER” AND “MORE THAN 95% OF THOSE DIAGNOSED WITH THE DISEASE WILL DIE FROM IT.”

Nowhere has there been a greater increase in the mortality rate of pancreatic cancer since 1990 than in Latin America and the Caribbean. To educate about this deadly disease, Celgene Brazil teamed up with United Medical to distribute flyers to the public and physicians from the Brazilian Oncology Society during their World Pancreatic Cancer Day.

And at its global headquarters in Summit, New Jersey, Celgene employees participated in the #mannequinchallenge, joined the #PancChat on Twitter and illuminated its campus in purple to raise awareness of pancreatic cancer. Fighting pancreatic cancer is a deeply personal cause for many Celgene employees who are committed to bringing hope to the pancreatic cancer community during World Pancreatic Cancer Day as well as every other day of the year.

To learn more about Celgene’s commitment to fighting pancreatic cancer, read “Patients Are Waiting: Supporting the Pancreatic Cancer Community.”  

Patients are Waiting: Supporting the Pancreatic Cancer Community

People who have been diagnosed with pancreatic cancer are waiting for information about their treatment options, according to a 2013 survey. Such findings underscore the importance of raising awareness of this deadly disease during Pancreatic Cancer Awareness Month.

Seventy percent of patients and caregivers surveyed said doctors did not provide treatment options when they were initially diagnosed, and 14 percent said they were never given the information. And although current treatment guidelines for pancreatic cancer recommend participation in clinical trials, half of patients surveyed reported their doctors never discussed the option with them.

Education plays an essential role in empowering patients and families. The pancreatic cancer community must continue investing in resources that help patients better cope with their anxieties and improve their overall experience. When patients understand their disease and the options available, they are more likely to stick with their treatment.

“At Celgene, we understand the personal tragedy and the toll pancreatic cancer takes on families and loved ones,” Mark Alles, chief executive officer of Celgene, said. “The 7,000 employees at Celgene are working every day on behalf of thousands of people suffering with this terrible disease.”

Celgene understands that patients are waiting for better treatment options and looking for information that will help them and their doctors guide their treatment choices. Celgene employees are focused on bringing new therapies and educating the pancreatic cancer community about the latest advances in the treatment of this deadly disease.

Many Celgene employees have experienced the devastation and feeling of helplessness caused by a pancreatic cancer diagnosis, through family members and friends. James Lajeunesse, hematology oncology consultant at Celgene, lost his father to pancreatic cancer. Because of his personal experience with his father’s pancreatic cancer journey, Lajeunesse said that he is “inspired to help healthcare providers understand the different treatment options.”

We’re making progress, and we will stay committed until we can find a cure because, after all, we know that patients are waiting.

Celgene has been at the forefront in the fight against pancreatic cancer and is dedicated to supporting patients and those who care for them. In partnership with 29 international patient groups, we launched the first-ever World Pancreatic Cancer Day in 2014. We were the first national sponsor for the Pancreatic Cancer Action Network’s PurpleStride events, which help to raise disease awareness as well as funds that support patients and advance research. Other initiatives we have supported over the years include the European Multi-Stakeholder platform on Pancreatic Cancer, the Pancreatic Cancer Forum in Milan and the “CancerCare Get You There” transportation assistance program.

Beyond supporting those patient group events and programs, Celgene has developed a personal information center for pancreatic cancer patients and caregivers at NavigatePanc.com. The site allows patients and caregivers to create their own personalized online libraries with information about the disease, clinical trials and support groups.

Above all else, however, pancreatic cancer patients are waiting for new treatment options. While researchers have made much progress, pancreatic cancer remains deadly, with less than 8 percent of patients living five years after being diagnosed.

Working with the pancreatic cancer community, Celgene is committed to improving the lives of those with pancreatic cancer by leveraging the latest science. Today, Celgene is conducting three global clinical trials for patients with various stages of pancreatic cancer and supporting more than 50 researcher-led studies in early stage and locally advanced disease.

“We’re making progress, and we will stay committed until we can find a cure because, after all, we know that patients are waiting,” Alles said.

To learn more about our commitment to the pancreatic cancer community, watch our “Patients are Waiting” video now.

In March, Seattle physician Mark Fishman became one of the 53,000 Americans expected to be diagnosed this year with pancreatic cancer, a disease with a low 8 percent five-year survival rate. But he and his wife Kathy see no reason why he can’t join the 8-percent club and are hopeful that it will happen.

To recognize Pancreatic Cancer Awareness Month, the Fishmans discuss how they keep each other strong and confident as Mark goes through treatment.

How did you react when you heard your diagnosis?

MARK AND KATHY FISHMAN ATTENDED THE PANCREATIC CANCER ACTION NETWORK’S 10TH ANNUAL CELEBRATION OF HOPE GALA IN SEATTLE IN MAY.

MARK AND KATHY FISHMAN ATTENDED THE PANCREATIC CANCER ACTION NETWORK’S 10TH ANNUAL CELEBRATION OF HOPE GALA IN SEATTLE IN MAY.

Mark: I knew it was a possibility, so it wasn’t shocking. Seeing how hard my family and friends took it was the worst part. We had just found out a week earlier that my son and his wife were pregnant with our first grandson, so I was worried I wouldn’t get to hold him.

Kathy: It was a horrible, horrible, horrible day. I felt like my world was imploding. It knocked the air out of my soul. Those were the nastiest two words that I ever heard; I still have trouble saying them. Because of Mark’s family history, we often talked about Alzheimer’s entering our world, but never this. I thought they made a mistake.

What aspects of pancreatic cancer do you think are uniquely challenging for patients?

Mark: It’s not a great diagnosis, but I just chose to move forward. Someone has to make up the 8 percent of patients who survive, right? Why couldn’t it be us? They say those numbers are going to double, and that’s what we’re hoping for.

Did you and your doctors consider enrolling in a clinical trial?

Mark: We talked about clinical trials, but either I didn’t qualify, or they started months down the road. With pancreatic cancer, you don’t have months to wait. So my doctor recommended mixing treatment protocols that called for a combination of existing chemotherapies, alternated back and forth for 48 weeks.

Did you question your doctor’s recommendations at all?

Kathy: I asked our doctor if he would choose this treatment if his own brother had cancer. He said yes, because he had seen spectacular results. I have pieces of paper all around our house with those words “spectacular results” on them as a reminder.

This experience has brought into focus what true family and friendship means. It’s reinforced for me the basic goodness of people.

What are the effects of your current treatment?

Mark: So far, I feel pretty good and have experienced few side effects. Prior to being diagnosed, I was fairly active. My trainer wanted me to enter a weightlifting contest; he thought I would do well for my age group. That’s out of the question now, but I still work out three days a week.

How has your experience with pancreatic cancer changed your outlook?

Mark: This experience has brought into focus what true family and friendship means. It’s reinforced for me the basic goodness of people. We have family in Seattle, and they bring food, call everyday and visit the hospital. Even the chemotherapy nurses—complete strangers—have done nice things for us.

Kathy: I’m in awe of my husband and crazy proud of his positivity. When Mark was first diagnosed, I focused on the next test results to see if his cancer was getting worse. Now, I try to mirror him by focusing on today. It’s helped me get to a better place, emotionally. It’s a beautiful day in Seattle, and we’re going to take a walk down the street toward the beach, holding hands, and appreciating the beauty of Mount Rainier.

MARK FISHMAN HOLDS HIS NEWBORN GRANDSON WHILE RECEIVING CHEMOTHERAPY TREATMENT FOR HIS PANCREATIC CANCER.

MARK FISHMAN HOLDS HIS NEWBORN GRANDSON WHILE RECEIVING CHEMOTHERAPY TREATMENT FOR HIS PANCREATIC CANCER.

What are some of the other things that you’re thankful for?

Kathy: We’ve done amazing things like visiting the Seattle Seahawks training camp and meeting quarterback Russell Wilson. He wrote on my jersey about the power of positive thinking. So I’m thankful we have good friends who made this lifelong dream come true for Mark.

Mark: I’ve been so thrilled to see my grandson, play with him and hold him. We hope to see him grow older and enjoy even more time with him.

What advice would you give to someone who has recently been diagnosed?

Kathy: If I weren’t in Seattle with my family and friends, I would be lost. We have so many cheerleaders here. You need a support group within your community. We are in it together. It would be so difficult for someone who was alone.

Mark: There’s no denying the stats are scary, but they are also five years old, and a lot of things have changed since then. A lot of new treatments and different approaches are on the horizon. Find an oncologist that doesn’t just stick with the original plan but is willing to adjust and try new things if it’s not working for you.

When patients are diagnosed with pancreatic cancer, doctors often tell them there are limited treatment options and to prepare for the worst. For pancreatic cancer patient and advocate Anne Glauber, though, a patient-first approach to treatment is helping her beat the odds. Glauber explains why patients need to make their voices heard during treatment.

When did you learn that you had pancreatic cancer? How has it affected your life?

I was diagnosed with stage IV pancreatic cancer in May 2014, and, to put it mildly, it has completely transformed my life. I had no signs or symptoms at all until a week before my diagnosis when I got jaundice and was feeling tired. I thought it was just because of my busy schedule; I was working as a managing partner at the public relations firm Finn Partners, co-founded NO MORE, had just published a book and was busy with pro bono projects as well. My diagnosis was shocking and devastating. My entire life halted.

How important was it to know that you were not alone at that time?

I couldn’t have gotten through that shock without the support of my family, my children Lili and David, my partner Dave and my close friends   They all helped me research where I should go for treatment and who the best pancreatic cancer specialists in the country were.

Anne Glauber was diagnosed with stage IV pancreatic cancer in 2014 and since then has advocated for a patient-first approach to pancreatic cancer treatment. Source: Anne Glauber

Anne Glauber was diagnosed with stage IV pancreatic cancer in 2014 and since then has advocated for a patient-first approach to pancreatic cancer treatment. Source: Anne Glauber

How limited were your treatment options?

When I was diagnosed, the doctor told me there were two treatment options—both had side effects but could possibly give me a couple of extra months to live. I went to the top cancer institutes in the country and heard the same things—they were offering me standard-of-care treatments. A friend recommended that I meet a doctor in Los Angeles, so my family and I packed our bags. Our planned three-day trip turned into a month-long stay after speaking with him about his treatment approach. He is creative and innovative in treating pancreatic cancer. I was introduced to another doctor at New York Presbyterian, who is now handling my day-to-day care and is also very innovative and shapes treatments that are personalized to my tumor. They introduced me to scientists involved with cutting-edge research.

How has that research informed your treatment?

It’s made it more personalized. We’ve incorporated approaches to make the cancer more susceptible to treatment, including investigative research in circulating tumor cell analysis. I also have an organoid, which are my tumor cells living in a lab dish. These cells can be tested with thousands of different possible treatments to see what can be effective for my pancreatic cancer. My organoid was created by scientists led by a researcher at the Lustgarten Foundation’s Pancreatic Cancer Research Lab at Cold Spring Harbor Laboratories.

Why is it important for patients to make sure their voices are heard?  

I think pancreatic cancer patients need to be informed about their treatment and to advocate for science-driven care that can be personalized to their unique tumor and cancer. Patients and families need to be educated about science-driven options beyond the standard of care so they can ensure that they are getting the best treatment possible for them.

We need to make sure insurance keeps pace with the science. Personalizing treatment is really, really critical for pancreatic cancer patients.

Because I’ve personally seen what the science can do, I became a board member of the Lustgarten Foundation, the largest private funder of pancreatic cancer research. I am also working on launching an interactive website called “Let’s Win” that will help pancreatic cancer patients share information about treatment with each other and learn about new a science advances and clinical trials. Let’s Win will be launched in May.

What should we as a society be focusing on with regard to pancreatic cancer?

There’s no cure for pancreatic cancer, and I don’t know if we’re anywhere close to a cure. We need to get more resources to explore personalized medicine further. We need to make genomic analysis easier to access and have better insurance coverage for it. While some things like organoids and circulating tumor cell analysis remain investigational, we need to make sure insurance keeps pace with the science. Personalizing treatment is really, really critical for pancreatic cancer patients.

What would you like people to know about pancreatic cancer on Rare Disease Day?

We need more resources dedicated to pancreatic cancer research. We need to get more funding for scientists who are making great strides in detecting and treating this disease. Pancreatic cancer is underfunded, especially given the relatively high mortality rates. We must have more funding for research into this disease.

Every year, more than 350,000 people around the world are diagnosed with pancreatic cancer. That’s nearly enough people to fill six football stadiums.  While it is currently the fourth leading cause of cancer-related deaths, it is estimated to surpass breast and colorectal cancer deaths by 2030 in some major countries.

While overall cancer prevalence and death rates are decreasing — thanks to advancements in diagnosis, research and treatments, — rates are actually increasing for pancreatic cancer due in part to a lack of significant progress in prevention, diagnosis, investment in research and access to new therapies.  In fact, the five year survival rates globally for pancreatic cancer are less than 7 percent and are among the lowest for any cancer.

While faced with these troubling statistics, research funding remains significantly low (approximately 2%) and access to treatment options remain challenging.  Read our story on how higher spending on cancer care can lower cancer mortality rates –  https://www.celgene.com/higher-spending-lower-cancer-mortality/ .

Access to medicines for advanced cancers is increasingly becoming a challenge in some countries. A recent survey of 100 oncologists in the UK, that was commissioned by Celgene UK and Ireland and supported by Pancreatic Cancer Action, shows that 74% of oncologists feel that access to novel medicines for advanced cancers has become increasingly challenging in the last 5 years. In addition, 66% of these oncologists have deemed not disclosing all treatment options to advanced cancer patients the best course of action.

Rich Bagger, SVP, Corporate Affairs & Market Access for Celgene says that “Access to available treatment options is a significant barrier in many countries to improving patients’ survival. It’s essential for patients and their families to have access to the treatment and supportive care they need to fight this terrible disease.”

In addition to improving access to available therapies, real change needs to be made to alter the landscape of pancreatic cancer; more needs to be done to address the inequalities in research funding, screening and diagnosis efforts.  Celgene is working alongside the international pancreatic cancer patient advocacy community in a variety of ways to help address these issues.

“Since I began advocating for patients years ago, I’ve seen the impact that disease awareness and an activated healthcare ecosystem can bring towards improving survival rates. Look at breast cancer, for example – early on, public awareness led to improved early detection, a greater focus on research funding and consequently novel treatment options,” said Joel Beetsch, Vice President of Patient Advocacy at Celgene.

In an effort to do just that, last year, Celgene helped create the first-ever World Pancreatic Cancer Day (WPCD); this year, Celgene is continuing its support of World Pancreatic Cancer Day to bring greater awareness and change the paradigm for pancreatic cancer patients.

Celgene is committed to transforming outcomes for patients with pancreatic cancer by pursuing the science to discover, develop and commercialize additional therapies. Today, Celgene is conducting three global studies in pancreatic cancer in all stages of the disease in addition to supporting more than 50 researcher-led studies in early stage and locally advanced disease. There are also more than 55 clinical trials underway in pancreatic cancer that combine Celgene products with more than 35 novel compounds.  These trials represent 19 new mechanistic drug classes.  It is Celgene’s hope that this commitment will bring hope and cures to patients and families who are fighting pancreatic cancer.

Watch our video to learn more about our commitment:

To spur change in Europe, Celgene supported the creation of Pancreatic Cancer Europe , European Multi-Stakeholder platform on Pancreatic Cancer in November 2014.  It is composed of European experts, academics, patients, clinical practitioners and policymakers who are committed to raising awareness around pancreatic cancer and are looking to improve care across Europe.

As death rates for pancreatic cancer continue to increase in the United States and Europe, there is still little publicity around this deadly disease. “Once we all stand in unison against this deadly disease, that’s when the battle will really begin,” added Beetsch.

Here are a few ways to join in the fight against pancreatic cancer: