CANCERCARE CONNECT BOOKLET SERIES. Pancreatic Cancer.

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1 CANCERCARE CONNECT BOOKLET SERIES Treatment Update Pancreatic Cancer

2 The CancerCare Connect Booklet Series offers up-to-date, easy-to-read information on the latest treatments, managing side effects and coping with cancer. To order free copies of this booklet, please use the online order form on our website, Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include counseling and support groups over the phone, online and in person, educational workshops, publications and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. CancerCare relies on the generosity of supporters to provide our services completely free of charge to anyone facing a cancer diagnosis. If you have found this resource helpful and wish to donate, please do so online at You may also mail a check, payable to CancerCare, to CancerCare, Attn: Donations, 275 Seventh Avenue, New York, NY Thank you. CancerCare National Office 275 Seventh Avenue New York, NY Toll-free HOPE (4673) Phone Fax info@cancercare.org Web The content of this booklet is independent, non-promotional and free of commercial influence and bias.

3 Treatment Update Pancreatic Cancer Table of Contents Introduction 2 Treatment Options 3 The Importance of Clinical Trials 8 Managing Side Effects 9 Discussing Pain With Your Health Care Team 10 About Pancreatic Enzymes 13 Your Support Team 14 Frequently Asked Questions 15 Resources 17 Editor Eileen M. O Reilly, MD Associate Director for Clinical Research, David M. Rubenstein Center for Pancreatic Cancer Research, and Attending Physician and Member, Gastrointestinal Oncology Service, Memorial Sloan-Kettering Cancer Center; Associate Professor of Medicine, Weill Medical College of Cornell University 2015 CancerCare. All rights reserved. 9/15 All people depicted in the photographs in this booklet are models, used for illustrative purposes only.

4 Recent progress in understanding the biology of pancreatic cancer is opening new windows of opportunity for treating it. The number of people diagnosed with pancreatic cancer is increasing as our population grows older. Nearly 50,000 people in North America will be diagnosed with pancreatic cancer this year. Most people diagnosed with pancreatic cancer are over age 60. Members of families with a history of breast, ovarian, prostate and endometrial cancer may be more prone to develop pancreatic cancer. The pancreas is a tadpole-shaped, six-inch-long gland that lies behind the stomach. It helps the digestive system break down and absorb fats and proteins in foods. The pancreas also produces essential hormones such as insulin, which controls blood sugar. Pancreatic cancer begins when abnormal cells in the pancreas grow out of control and form a tumor. More than 95 percent of pancreatic cancers are exocrine tumors. These tumors start in the exocrine cells that make pancreatic enzymes that help in digestion. Neuroendocrine or islet-cell tumors account for less than 5 percent of all pancreatic cancers. They affect the hormone-producing cells in the pancreas and tend to grow more slowly than exocrine tumors. 2

5 Treatment Options After you have been diagnosed with pancreatic cancer, your health care team will discuss with you the best way to proceed with your treatment. Factors that will influence the choice of treatment include the size of the tumor, its location, how quickly it is growing, whether it has spread to other parts of the body and your overall health. Researchers have identified four different types of gene mutations (changes) in the majority of people with pancreatic cancer. This finding has been of great value in discovering new ways to treat pancreatic cancer. Surgery Treatment for pancreatic cancer is based on whether or not the cancer is confined to the pancreas, involves major blood vessels or has spread (metastasized) to other parts of the CANCERCARE CONNECT TREATMENT UPDATE: PANCREATIC CANCER 3

6 body. If the tumor has spread beyond the pancreas, then treatments other than surgery are used. Fifteen percent to 20 percent of people who are diagnosed with pancreatic cancer located in the head of the pancreas may be candidates for a Whipple procedure. This is a type of reconstructive surgery involving removal of parts of the pancreas, gall bladder, bile duct and small bowel. A portion of the pancreas is left in place to produce digestive juices and insulin. Some patients may require a total pancreatectomy, which removes the entire pancreas, part of the stomach and small intestine, the bile duct, gallbladder, spleen and nearby lymph nodes. If surgery is required, patients should select a skilled surgeon who is well-experienced in operating on pancreatic cancer and who has a dedicated hospital support team. Studies show that patients who undergo pancreatic surgery performed by a skillful surgeon in a well-experienced clinical setting have the best outcomes. Palliative Surgery Palliative surgery and other interventions are performed to relieve symptoms such as jaundice and blockage of the stomach or duodenum (the upper part of the small intestine). The most common types of palliative surgery for pancreatic cancer are biliary bypass surgery, duodenal bypass surgery and bile duct or duodenal stent insertion. Biliary bypass surgery reroutes the flow of bile blocked by a tumor in the bile duct. (The bile duct is a tube that carries bile from the gallbladder to the duodenum.) A gastrojejunostomy (or duodenal bypass surgery) may be performed if the tumor blocks the duodenum. A gastrojejunostomy allows food to 4

7 pass from the stomach directly into the small bowel. Biliary stenting is a procedure done to open a blocked bile duct by inserting a small metal or plastic tube (stent) to keep the bile duct open. Radiation Radiation can prevent pancreatic tumors from growing and sometimes shrinks them. Since radiation is directed to a specific (focused) area, it is considered a local treatment. Several different types of radiation are used in patients with pancreatic cancer, including standard external beam radiation and two variations of it: intensity-modulated radiation therapy (IMRT) and stereotactic body radiation therapy (SBRT). Standard external beam radiation delivers radiation by using a machine outside the body that directs a beam of radiation through the skin to the tumor. IMRT is a type of external beam radiation therapy that delivers focused radiation to the CANCERCARE CONNECT TREATMENT UPDATE: PANCREATIC CANCER 5

8 tumor by varying the intensity of the radiation beam under precise computer control. SBRT is another type of external beam radiation therapy that delivers high doses of radiation precisely to small tumors, usually in five or fewer treatments. The side effects of radiation can build up over time. The most common effects of radiation for pancreatic cancer are loss of appetite, nausea, diarrhea and fatigue. Radiation may be given in combination with chemotherapy. The three drugs most often used with radiation are fluorouracil, capecitabine (Xeloda and others) and gemcitabine (Gemzar and others). Chemotherapy For many years, gemcitabine has been a standard of care for inoperable pancreatic cancer. Gemcitabine currently is 6

9 approved for the treatment of locally advanced or metastatic unresectable (inoperable) pancreatic cancer. It can shrink the cancer, ease symptoms and help patients live longer with a better quality of life. Research has shown that gemcitabine also is beneficial after surgery for pancreatic cancer. Several other chemotherapy drugs are used for the treatment of pancreatic cancer: albumin-bound paclitaxel (Abraxane), fluorouracil (5-FU), oxaliplatin (Eloxatin and others) and irinotecan (Camptosar and others). Albumin-bound paclitaxel is approved in combination with gemcitabine as first-line treatment for metastatic pancreatic cancer. In addition to the four approved drugs, FOLFIRINOX, a combination of 5-FU, leucovorin, irinotecan and oxaliplatin, often is used in the treatment of metastatic pancreatic cancer. Targeted Treatments Targeted treatments are designed to specifically interfere with cell mechanisms that tumors use to grow and spread, largely bypassing normal, healthy tissues and organs. Currently, erlotinib (Tarceva) is the only approved targeted treatment for locally advanced, inoperable or metastatic pancreatic adenocarcinoma, the most common type of pancreatic cancer. It is usually given in combination with gemcitabine. Two other targeted treatments, sunitinib (Sutent and others) and everolimus (Afinitor), are approved for the treatment of locally advanced or metastatic pancreatic neuroendocrine tumors. On the horizon are several promising new treatment approaches for patients with locally advanced or metastatic pancreatic cancer: MM-398, a form of irinotecan that has been modified to improve its cancer-fighting properties; CANCERCARE CONNECT TREATMENT UPDATE: PANCREATIC CANCER 7

10 The Importance of Clinical Trials Clinical trials are the standard by which we measure the worth of new treatments and the quality of life of patients as they receive those treatments. For this reason, doctors and researchers urge people with cancer to take part in clinical trials. Your doctor can guide you in making a decision about whether a clinical trial is right for you. Here are a few things that you should know: Often, people who take part in clinical trials gain access to and benefit from new treatments. Before you participate in a clinical trial, you will be fully informed as to the risks and benefits of the trial. Most clinical trials are designed to test a new treatment against a standard treatment to find out whether the new treatment has any added benefit. You can stop taking part in a clinical trial at any time for any reason. A combination of two different vaccines (GVAX and CRS- 207) designed to stimulate the body s immune defense system to seek out and destroy pancreatic cancer cells; PEGPH20, an enzyme that dissolves the protective halo around pancreatic cancer cells and improves the access of chemotherapy drugs to them; and The addition of various targeted treatments with novel mechanisms of action to FOLFIRINOX or gemcitabine and albumin-bound paclitaxel. 8

11 Managing Side Effects There are many ways that your health care team can manage the side effects of pancreatic cancer or its treatment. Pain Pain can occur if the tumor presses on nerves or other organs near the pancreas. Doctors manage your pain according to how severe it is. For mild pain, they may prescribe an overthe-counter pain reliever such as ibuprofen (Advil, Motrin and others) or acetaminophen (Tylenol and others). For moderate pain, they may prescribe a mild opioid such as tramadol (Ultram and others) or hydrocodone, which often is combined with acetaminophen. For more severe pain, they may prescribe a strong opioid such as morphine or hydromorphone. CANCERCARE CONNECT TREATMENT UPDATE: PANCREATIC CANCER 9

12 Discussing Pain With Your Health Care Team The more detail you can give your health care team about the kind of pain and how much pain you feel, the better they will be able to treat it. Here are some tips that can help: Keep a diary with notes about how your pain affects you. That way, you don t have to rely on memory to give your health care team accurate information. Every time you meet with your health care team, discuss whether or not you are experiencing pain. It is part of your vital signs (just like blood pressure and heart rate), and it should be checked. Use a scale of 0 (no pain) to 10 (very bad pain) to rate your pain. This is a good way to measure pain and find out how well your medication is working to relieve it. Tell your health care team whether anything makes the pain worse. For example, does standing, sitting or getting up from a seated position make it hurt more? Talk about whether anything relieves the pain. For instance, do you feel better if you apply ice or a heated compress to the area or when you lie down or walk around? Let your health care team know how much relief you are getting from pain medicines or other methods you use. Does your pain medicine provide you with enough relief? Does it wear off before it s time for your next dose? Are you having any unpleasant side effects from using it? 10

13 Opioid medications for treating pain may cause side effects such as constipation, sleepiness or nausea. Constipation, in particular, can be managed by taking a laxative, stool softener or fiber supplement such as flaxseed. Pain care specialists can perform a variety of nerve blocks to alleviate back or abdominal pain and reduce the need for opioids. A celiac plexus nerve block is a procedure in which the celiac plexus (a group of nerves near the pancreas) is numbed with medication injected through a needle. The pain relief following a celiac block may last several months and may allow a reduction in the use of opioid pain medications. If pain comes from the pancreatic tumor itself or from tumors that have spread to the bone, radiation may be an option. For some people, relaxation exercises and mind/body techniques, such as deep breathing and meditation, also may help manage the pain. Some cancer treatment centers have programs to teach people with cancer and their caregivers the basics of these techniques. The professional oncology social workers at CancerCare can help you learn these techniques as well. CANCERCARE CONNECT TREATMENT UPDATE: PANCREATIC CANCER 11

14 Pain is treatable, and getting help for it can greatly improve your quality of life. People who are pain-free eat better, sleep better and cope with chemotherapy better than those who have severe pain. Jaundice Jaundice is common in people with pancreatic cancer that begins in the head of the pancreas. It is caused by blockage of the bile duct, a small tube that carries bile from the liver and gallbladder to the upper part of the small intestine. Symptoms may include loss of appetite, weight loss, nausea, itching and yellowing of the skin and eyes. Jaundice often is treated with the use of a stent, a tube that is inserted into the bile duct to allow for proper drainage. In patients in which placement of a stent is not possible, external biliary drainage (a tube that goes into the liver and drains outside to a drainage bag) may be necessary. If you have fever, chills, abdominal pain or any return of jaundice after getting a stent, let your health care team know right away. These symptoms can be signs of an infection or a problem with the stent. 12

15 About Pancreatic Enzymes A healthy pancreas secretes a number of substances called enzymes that help with digestion. When a person has pancreatic cancer, the cancer or the treatments for it (including surgery) may affect the ability of the pancreas to secrete needed enzymes. Prescription pancreatic enzymes are available. Everyone needs a different amount of pancreatic enzymes to help with digestion, and pancreatic enzymes vary from brand to brand. If you have been prescribed pancreatic enzymes, it may take some time to find the brand and dose that work best for you. If you experience any of the following symptoms, talk with your health care team: Indigestion or cramping after meals; Frequent or loose stools or diarrhea; Floating or light-colored stools; Greasy or fatty stools; Foul-smelling gas or stools; or Unexplained weight loss. Pancreatic Insufficiency Pancreatic insufficiency is when your pancreas doesn t make enough of the enzymes that your body needs to break down foods in the stomach and intestines. Symptoms include weight loss, stomach pain, bloating, gas and fatty stools. Taking prescription pancreatic enzymes by mouth and a change in diet can reduce the side effects seen with pancreatic insufficiency. CANCERCARE CONNECT TREATMENT UPDATE: PANCREATIC CANCER 13

16 Your Support Team When you are diagnosed with pancreatic cancer, you re faced with a series of choices that will have a major effect on your life. Your health care team, family members and friends will likely be an invaluable source of support at this time. You can also turn to these resources: Oncology social workers provide emotional support for people with cancer and their loved ones. These professionals can help you cope with the challenges of a cancer diagnosis and guide you to resources. CancerCare offers free counseling from professional oncology social workers who understand the challenges faced by people with cancer and their caregivers. CancerCare s professional oncology social workers can work with you one-on-one to develop strategies for coping with treatment and its side effects. Oncology social workers also can help you communicate with your doctor and other members of your medical care team about the health care issues that are important to you. Support groups provide a caring environment in which you can share your concerns with others in similar circumstances. Support group members come together to help one another, providing insights and suggestions on ways to cope. At CancerCare, people with pancreatic cancer and their families can participate in support groups in person, online or on the telephone. Financial help is offered by a number of organizations to assist with cancer-related expenses such as transportation to treatment, child care or home care. To learn more about how CancerCare helps, call us at HOPE (4673) or visit

17 Q. More about pancreatic cancer Frequently Asked Questions When should a person diagnosed with pancreatic cancer seek a second opinion? Is getting a second opinion wise? A. It makes sense to seek a consultation from a major cancer center or a group of physicians who are experts in managing pancreatic cancer at the time of diagnosis. That s when there is the most discussion as to what would be the best course of treatment for a particular patient. For example, say a person has a localized pancreatic tumor and there s a question as to whether or not it is operable or whether preoperative treatment should be given beforehand CANCERCARE CONNECT TREATMENT UPDATE: PANCREATIC CANCER 15

18 to shrink the tumor. Input from an expert cancer center can be helpful in guiding management in these situations. Another good time to seek a second opinion is when a person with metastatic pancreatic cancer is not responding to treatment, and the question is what might be the best next step. Should another standard treatment be considered or is this the right time for that patient to participate in a clinical trial and, if so, what would be the best trial for him or her? Getting a second opinion doesn t mean treading on the toes of the primary physician who s coordinating this person s care, but a second opinion in these cases can augment and extend the care given. Q. A. How can I tell if I need to increase the dose of pancreatic enzymes I m taking? If you are still experiencing symptoms such as bloating, discomfort after eating and foul-smelling stools after taking a recommended dose of pancreatic enzymes, you should first check with your health care team. They may recommend that you take a larger dose to see if that helps to minimize the symptoms. Changing brands might help too. Q. Last year a three-centimeter IPMN (intraductal papillary mucinous neoplasm) was removed from the tail of my pancreas. Will I eventually have to have my pancreas removed? A. IPMN is a precancerous condition in the pancreas. However, the actual risk of developing cancer from IPMN is quite low, particularly if the IPMN is not in the main pancreatic duct. Once you have an IPMN removed, you will usually undergo yearly monitoring with ultrasound or an MRI. 16

19 Resources CancerCare HOPE (4673) American Cancer Society Cancer.Net Cancer Support Community National Cancer Institute National Coalition for Cancer Survivorship National Comprehensive Cancer Network Hirshberg Foundation for Pancreatic Cancer Research The Lustgarten Foundation Pancreatic Cancer Action Network CLINICAL TRIALS WEBSITES Coalition of Cancer Cooperative groups EmergingMed National Cancer Institute This booklet was made possible by Astellas US, LLC and Celgene Corporation and was supported by a grant from Genentech. CANCERCARE CONNECT TREATMENT UPDATE: PANCREATIC CANCER 17

20 for Help and Hope, visit or call: HOPE (4673)