Conquer TM
the patient voice JUNE 2015
VOL. 1 • NO. 3
TAKING CARE OF THE CAREGIVER THE STORY OF CANCER
JOURNEY LGLLeukemia MY
WITH
“I have never once asked myself, ‘Why me?’ Instead, I ask, ‘How can I help others?’ That is what led me to create the LGL Leukemia Foundation.”
MANAGING STRESS: TIPS FOR CANCER SURVIVORS 9 TIPS FOR TAKING CONTROL OF YOUR CANCER CARE COSTS ABOUT BRAIN CANCER UNDERSTANDING MELANOMA
Tina Cancio Official patient magazine of C on q uer-mag a zine . c o m
editorial advisory board uu Cheryl Bellomo, RN, BSN, OCN, CN-BN
uu Margaret M. Charpentier, PharmD, BCPS
uu Sharon S. Gentry, RN, MSN, AOCN, CBCN
uu Marian E. Gilmore, RN, OCN
uu Ashley Harris, MS, RD, CSO
uu Paulette Mehta, MD, MPH
uu Carolyn Messner, DSW, MSW, OSW-C,
uu Sheryl M. Ness, RN, MA, OCN
uu Catherine M. Poole
uu Frank dela Rama, RN, MS, AOCNS
uu Amy E. Rettig, MSN, MALM, RN, ACNS-BC,
uu Heather Wright Renick, BSN, RN, CBPN-IC
uu Lillie D. Shockney, RN, BS, MAS
uu Julie Silver, MD
Oncology Nurse Navigator Intermountain Southwest Cancer Center Valley View Medical Center Cedar City, UT
Clinical Associate Professor University of Rhode Island North Kingstown, RI
Breast Nurse Navigator Novant Health: Derrick L. Davis Cancer Center Winston-Salem, NC
Nurse Navigator Multi-Specialty Clinic Dana-Farber/Brigham & Women’s Cancer Center in clinical affiliation with South Shore Hospital, South Weymouth, MA
Outpatient Clinical Dietitian The Ohio State University Comprehensive Cancer Center/James Cancer Hospital Columbus, OH
Professor of Hematology/Oncology Departments of Pediatrics and Internal Medicine University of Arkansas for Medical Sciences Staff Hematologist/Oncologist Central Arkansas Veterans Healthcare System Little Rock, AR
LCSW-R, BCD Director of Education and Training CancerCare New York, NY
Educator Cancer Education Program Assistant Professor of Oncology Mayo Clinic College of Medicine Rochester, MN
Clinical Nurse Specialist, Oncology/Genomics CANCER CARE Palo Alto Medical Foundation Palo Alto, CA
President/Founder Melanoma International Foundation Glenmoore, PA
PMHNP-BC, CBCN Clinical Nurse Specialist–Emergency Services The Ohio State University Wexner Medical Center/James Cancer Hospital and Solove Research Institute, Columbus, OH
Breast Program Coordinator Breast Nurse Navigator The Breast Center at St. Catherine Hospital Garden City, KS
University Distinguished Service Associate Professor of Breast Cancer Depts of Surgery and Oncology Administrative Director The Johns Hopkins Breast Center Director, Cancer Survivorship Programs at the Sidney Kimmel Cancer Center at Johns Hopkins Associate Professor, JHU School of Medicine Depts of Surgery, Oncology & Gynecology and Obstetrics Associate Professor, JHU School of Nursing Baltimore, MD
Associate Professor Harvard Medical School Department of Physical Medicine and Rehabilitation Boston, MA
2
June 2015 • Conquer-magazine.com
PUBLISHING STAFF Senior Vice President/Group Publisher Nicholas Englezos nenglezos@the-lynx-group.com Senior Vice President, Sales & Marketing Philip Pawelko ppawelko@the-lynx-group.com Vice President/Group Publisher John W. Hennessy jhennessy2@the-lynx-group.com Vice President/Director of Sales & Marketing Joe Chanley jchanley@the-lynx-group.com Director, Client Services Dave Dempsey ddempsey@the-lynx-group.com Senior Editorial Director Dalia Buffery dbuffery@the-lynx-group.com Associate Editors Lara J. Lorton Jaclyn Ix Production Manager Stacey Holston
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VOL. 1 NO. 3
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PATIENT STORIES My Journey with LGL Leukemia
7 14 24
FAMILY MEMBERS A Husband’s Letter
13 21
By Tina Cancio
CAREGIVERS Taking Care of the Caregiver
Holding Hands Through the Cancer Journey
By Marian E. Gilmore, RN, OCN
By Paul Smyth
By Catherine M. Poole
It’s Our Cancer By Brenda & Steve
SURVIVORSHIP
10
M anaging Stress: Tips for Cancer Survivors
B y Susan Yaguda RN, MSN
29 32
Fear of Recurrence
By Ginger Modiri
Patient Empowerment: 9 Tips for Taking Control of Your Cancer Care Costs By Tracy Foster, MBA Continued on page 4
CONQUER: the patient voiceTM magazine provides an open forum for patients with cancer and cancer survivors to address issues directly affecting their daily lives as they navigate their diagnosis, treatment, and life as a cancer survivor. The official patient publication of the Academy of Oncology Nurse & Patient Navigators (AONN+), CONQUER features articles by and for patients with cancer, cancer survivors, caregivers, and nurse navigators. This magazine is focused on issues affecting patients, their family members/caregivers, and cancer survivors, featuring real-world stories from patients and cancer survivors. CONQUER further provides updates on various tumor types, support services, timely cancer news, and life planning for patients and survivors. This magazine is an open invitation to all patients with cancer to share their experiences with others and take an active part in their treatment and survivorship.
Editorial contact information: editorial@conquer-magazine.com; phone: 732-992-1892; fax: 732-992-1881.
Cover photo: Scott Unger, sitting front row (right), was diagnosed with melanoma in June 2014. This photograph was taken in April 2015 at Safe from the Sun, a 5K-walk race organized by the Melanoma International Foundation. 3
June 2015 • Conquer-magazine.com
departments FROM YOUR NAVIGATOR 18 Navigating the Continuum of Cancer Care By Cheryl Bellomo, BSN, RN, OCN, CN-BN
44 Consider Participating in Clinical Trials
By Sharon S. Gentry, RN, MSN, AOCN, CBCN
CANCER REHABILITATION 48 Dealing with Neuropathy Associated with Chemotherapy By Brian D. McMichael, MD
BOOK REVIEW 51 The Story of Cancer By Erica Iantuono, PharmD
NUTRITION & CANCER 54 How to Eat While You Treat By Ashley Harris, MS, RD, CSO
FINANCIAL SUPPORT SERVICES
62 GENETICS & CANCER 36 Genetic Testing for Cancer By Robert Pilarski, MS, LGC
39 Genetic Risk Factors for Multiple Myeloma By Kristen Chanley
about my cancer KIDNEY CANCER 27 What You Need to Know About Kidney Cancer By Cheryl Bellomo, BSN, RN, OCN, CN-BN
PROSTATE CANCER 41 Prostate Cancer Screening: A Decision, Not a Prescription By Frank dela Rama, RN, MS, AOCNS
BRAIN CANCER 58 What You Need to Know About Brain Cancer
MELANOMA 60 Melanoma: Not Just Skin Cancer
By Kristen Chanley
By Catherine M. Poole 4
June 2015 • Conquer-magazine.com
CONQUER: the patient voiceTM, ISSN (re quested), is published 6 times a year by Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. Telephone: 732-656-7935; Fax: 732.656-7938. Copyright © 2015 by Green Hill Healthcare Communications, LLC. All rights reserved. CONQUER: the patient voice logo is a trademark of Green Hill Healthcare Communications, LLC. No part of this publication may be reproduced or transmitted in any form or by any means now or hereafter known, electronic or mechanical, including photocopy, recording, or any informational storage and retrieval system, without written permission from the publisher. Printed in the United States of America. EDITORIAL CORRESPONDENCE should be ad dressed to EDITORIAL DEPARTMENT, CONQUER: the patient voice (CONQUER), 1249 South River Road, Suite 202A, Cranbury, NJ 08512. YEARLY SUBSCRIPTION RATES: United States and possessions: individuals, $50.00; institutions, $90.00; single issues, $5.00. Orders will be billed at individual rate until proof of status is confirmed. Prices are subject to change without notice. Correspondence regarding permission to reprint all or part of any article published in this journal should be addressed to REPRINT PERMISSIONS DEPARTMENT, Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. The ideas and opinions expressed in CONQUER do not necessarily reflect those of the editorial board, the editorial director, or the publisher. Publication of an advertisement or other product mentioned in CONQUER should not be construed as an endorsement of the product or the manufacturer’s claims. Readers are encouraged to contact the manufacturer with questions about the features or limitations of the products mentioned. Neither the editorial board nor the publisher assumes any responsibility for any injury and/or damage to persons or property arising out of or related to any use of the material contained in this periodical. The reader is advised to check the appropriate medical literature and the product information currently provided by the manufacturer of each drug to be administered to verify the dosage, the method and duration of administration, or contraindications. It is the responsibility of the treating physician or other healthcare professional, relying on independent experience and knowledge of the patient, to determine drug dosages and the best treatment for the patient. Every effort has been made to check generic and trade names, and to verify dosages. The ultimate responsibility, however, lies with the prescribing physician. Please convey any errors to the editorial director.
Editorial contact information: editorial@conquer-magazine.com phone: 732-992-1892
introduction Survivorship and Patient Empowerment By LILLIE SHOCKNEY, RN, BS, MAS
Welcome to our latest issue of CONQUER: the patient voice. There is so much information in this issue, I hardly know where to start! You will find heartfelt stories written by patients with cancer and survivors like you who share their personal journeys. One story is a letter from a husband to his wife’s nurse navigator (get tissues for this one).
THERE IS SO MUCH INFORMATION IN THIS ISSUE, I HARDLY KNOW WHERE TO START! One patient story reinforces that a diagnosis of cancer and its treatment, even well into survivorship, continues to impact a survivor’s life—especially when it comes to getting new screening tests or scans. The fear of recurrence is always there to some degree. Realizing that this is normal is important. You can also hear from a patient with leukemia who took her cancer experience and used it to do good by founding the LGL Leukemia Foundation. Navigators, whether it’s a nurse navigator or a patient (lay) navigator, fulfill many roles and responsibilities on behalf of the patients with cancer they support. Learn more about the role of navigation and how the Commission on Cancer, which is the organization that accredits cancer centers, has acknowledged its importance and has built standards around this important process. Not too sure if you want to consider participating in a clinical trial? Read more about this innovative therapy so you can make a more informed decision. There are also some practical articles in here for you on dealing with stress during cancer treatment, and even on what you can eat while you’re receiving treatment. We are living in a healthcare environment that is more complex than ever, and more costly than ever, too. This is especially true for cancer care. Find out how you can take control of the cost of your cancer care in the Financial Support Services section. Many of you have likely heard of the book or have recently seen the documentary, The Emperor of All Maladies. We have a review of this book for you, and I promise it will enlighten you and give you pause to think more about where we came from, and where we’re going in the fight against this disease, which is far more complex than anyone ever imagined. Finally, we have an article about caregivers’ needs. All too often, when someone is serving as a caregiver, they abandon their own healthcare needs. This is, frankly, not a good idea. Weight gain, sedentary behavior, and postponement of their own wellness checkups and cancer screenings, combined with added stress, makes a bad combination from a health perspective. Learn about the importance of the caregiver being cared for, too. See, I told you this was a journal filled with a wealth of knowledge, confirmation, and assurance. Read it, and then share it with others. Take care!
Program Director, Academy of Oncology Nurse and Patient Navigators 23-year cancer survivor University Distinguished Service Assoc Prof of Breast Cancer, Depts of Surgery and Oncology; Admin Director, Johns Hopkins Breast Center; Director, Cancer Survivorship Programs at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins; Assoc Prof, JHU School of Medicine, Depts of Surgery, Oncology & Gynecology and Obstetrics; Assoc Prof, JHU School of Nursing, Baltimore, MD
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June 2015 • Conquer-magazine.com
The information you need throughout your cancer journey Each Issue of CONQUER™ Contains
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My
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LGL Leukemia By TINA CANCIO, FOUNDER, LGL LEUKEMIA FOUNDATION
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t all began with me feeling very tired in early 2009. I slept as much as I possibly could. I just chalked it up to my extreme work and travel schedule, being a parent to 2 children, and owning a salon spa with my husband (who has been there for 21 years). I also began to have monthly infections that would not go away, even with antibiotics. So, after my blood test results were consistently abnormally low, my family I HAVE NEVER ONCE ASKED MYSELF, doctor sent me to ‘WHY ME?’ INSTEAD, I ASK, ‘HOW CAN I HELP a local hematologist. OTHERS?’ THAT IS WHAT LED ME TO CREATE THE LGL LEUKEMIA FOUNDATION. I HOPE THE WEBSITE CAN BE A HUB WHERE PATIENTS CAN GET INFORMATION AND CONNECT WITH OTHERS.
“
”
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June 2015 • Conquer-magazine.com
patientstories
Tina with her family.
THE SEARCH FOR A DIAGNOSIS
“face of cancer can be very deceiving.” I retired officially in November 2010. After working for the past 25-plus years in business as a sales management executive in the food and beverage industry in different companies, such as Sara Lee, Melitta, Pepsi, and Vitaminwater/The Coca-Cola Company, it has been a big shift for me to get used to retirement. It has been very challenging, given my “type A” personality. My blood type is also “A+.” Could there be a connection here?
The hematologist sent me for my first bone marrow biopsy, which came back with strange results. At first they thought the results were a mistake that came from a “bad sample,” or that I might have myelodysplastic syndrome (MDS), a bone marrow disorder that can develop into leukemia. However, because my blood tests were consistently low, they decided to send me to the Mayo Clinic in Jacksonville, FL, which is 3.5 hours from my house. For the next 6 months I visited the Mayo Clinic, all the while working and planning my wedding and a 2-week honeymoon to Europe. My husband keeps saying, “I don’t know how you did it!” After the 6 months of visits to the Mayo Clinic, I was referred back to the local hematologist, who was very puzzled. He sent me to another hematologist who was featured on the TV show called “Mystery Diagnosis.” Ironically, we had seen the show a year earlier, and we recognized him when he walked in. I was sent for my second bone marrow biopsy and what seemed like “every test under the sun.” In May 2010, I was diagnosed with aplastic anemia (a bone marrow failure disease), a rare blood disease, with only 600 to 900 reported cases each year. Many people don’t even know I have an illness. I look perfectly healthy on the outside, but the
ANOTHER DIAGNOSIS In May 2011, I was diagnosed with T-cell large granular lymphocytic (LGL) leukemia, a rare, chronic form of leukemia that affects white blood cells called lymphocytes, with only 200 to 300 reported cases diagnosed each year. I asked my hematologist-oncologist whether the LGL leukemia was there first, and he said it was like “the chicken or the egg.” He believes the LGL leukemia was there first, because it can “attract” autoimmune disorders. Aplastic anemia and LGL leukemia are 2 rare conditions that require more studies for understanding. For me this is a constant educational process, because blood is complex and not well understood. Unfortunately, we need blood to live! It’s like learning an entirely new language. 8
June 2015 • Conquer-magazine.com
patientstories I AM MOST GRATEFUL FOR THE “GIFT OF LIFE, AND I WILL LIVE
THE SEARCH FOR A CURE I have been told that the only possible cure for aplastic anemia, along with my T-cell LGL leukemia, is an allogeneic bone marrow transplant. I had a 4-hour tour of the bone marrow transplant department, only to find out I don’t qualify for a transplant, because I am older than 35 years and I don’t have a full sibling. Even with a full sibling, there is still only a 25% chance of a positive match. Therefore, my transplant risk for getting graftversus-host disease is very high, and the mortality risk is simply too great. My best option for a possible match, should I ever need one, would be the National Bone Marrow Donor Registry (www.marrow.org). Because I am immunosuppressed (I have very low antibodies), I am extremely susceptible to infection. Therefore, I need to avoid large indoor crowds, indoor shopping malls, and indoor restaurants; keep away from sick people; avoid air travel; and keep myself bathed with antibacterial gel. On slow days or in areas that are not very heavily populated, I can be in and out for a short time wearing my antibacterial mask.
IT TO THE FULLEST, NO MATTER WHAT. WITH MY INCREDIBLE FRIENDS, FAMILY, AND MY FAITH, THIS LIFE-CHANGING JOURNEY HAS BEEN FILLED WITH MUCH LOVE AND ENCOURAGEMENT.
”
can I help others?” That is what led me to create the LGL Leukemia Foundation. When I was first diagnosed with LGL leukemia, there was nothing available to help guide me with answers or to connect me with other patients with these blood disorders. There was the Aplastic Anemia & MDS International Foundation, but there was nothing for LGL leukemia. I hope the LGL Leukemia Foundation website can be a hub where patients can get information and connect with other patients struggling with the same questions. I am blessed to have such an amazingly loving, caring, and supportive family, employees, and friends! I try to always remain positive, no matter how bad things get. I am a strong woman who believes that God is in control. I do my part to live a moral life, and I pray for my next bone marrow results to be 100% normal! I am most grateful for the gift of life, and I will live it to the fullest, no matter what. It has been a long and winding road. With my incredible friends, family, and my faith, this life-changing journey has been filled with much love and encouragement. ◆
TREATMENT OPTIONS After 4 hospitalizations in 6 months in 2013, and 1 in March 2014, my symptoms are being treated as they occur. My symptoms include severe migraines, extreme fatigue, difficulty breathing, cardiac arrhythmia, low blood pressure, orthostatic hypotension, osteoarthritis, day and night sweats, chronic infections, severe bone and joint pain (especially my spine and hips), and antibody deficiency. I will be having my eighth bone marrow biopsy surgery in May 2015. To date, I have had great success with intravenous infusion treatment and intravenous immunoglobulin (IVIG). The chemo drug of choice is Trexall (methotrexate) for LGL leukemia, or horse antithymocyte globulin for aplastic anemia. However, my hematologist-oncologist and I have opted not to use chemo because I am highly sensitive and react negatively to most medications, but I will if I absolutely have to.
PATIENT RESOURCES
KEEPING A POSITIVE OUTLOOK I don’t believe in doom and gloom. I have never once asked myself, “Why me?” Instead, I ask, “How
LGL Leukemia Foundation www.lglleukemiafoundation.org 9
June 2015 • Conquer-magazine.com
5 survivorship
TIPS
for
cancer survivors
to
MANAGE STRESS
By SUSAN YAGUDA, RN, MSN
iting r w e s u o t ant t r o p m d i n s i a y It n a s s e expr o t y a w a s n to a e p g n i t t u by p s g n i l e e f l l a g any n i v a e l e l i paper wh the process. of t u o t n e m judg
Do you remember the exact moment you found out you had cancer? Did your mouth go dry, your heart start beating faster? Did you start feeling heaviness in your chest? These are all the symptoms of a stress reaction and, of course, who wouldn’t feel stressed when receiving a cancer diagnosis? Once treatment decisions are made, another wave of stressful thoughts often comes over cancer survivors: Is the treatment going to work? Will I be able to tolerate the treatment? Will I look different, and will I be able to keep doing the things I need and want to do? Stress can interfere with clear thinking, memory, and sleep. And although stress is a normal part of life, it can become overwhelming. Fortunately, there are ways to help you cope with the stress of cancer and cancer treatment. Along with mindfulness meditation (in a future issue of this magazine), try these 5 tips and tools to help you stay calm and grounded. 10
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survivorship
1
Journal Writing
Journal writing is a great way to help clarify and express your feelings. You can share your journal writing with others if you’d like, but sometimes it’s good to have a private place to write about your feelings. You can use any kind of journal, such as a special notebook, or journaling on the computer or online. Cancer survivors often find that keeping a gratitude journal helps with keeping a positive focus. Use writing to express all your feelings by putting pen to paper, while leaving any judgment out of the process. Your writing doesn’t need to be “good” or “bad.” You are simply using writing as a tool to express yourself.
3
Guided Imagery
Guided imagery is using your imagination to help manage physical and emotional discomfort. Guided imagery is sometimes also called “guided visualization.” It helps to have someone who is experienced with guided imagery who could lead this activity, or you could listen to a CD or a tape. Guided imagery uses all the senses to help create a healing experience. This works best if you practice it daily. Over time, you will find that you become more relaxed, and that those positive feelings last long after the guided imagery session is over.
2
Breathing for Peace and Calm
Did you know you have a tool with you all the time that helps you cope with stress? You can actually soothe your nervous system by simply changing the way you breathe. When we are stressed or nervous, we tend to breathe very shallow breaths in the upper part of our lungs. Pausing to take a deeper, slower breath helps to smooth your nervous system, which helps you feel calmer. Practice slow, deep, relaxing breathing when you are not feeling stressed to become familiar with this skill when the going gets tough. Breathe in through your nose and count to 6, then exhale through your mouth while counting to 8. Keep the pace of your breath comfortable, but really think about making your breathing slower and deeper than normal. If you begin to feel light-headed or dizzy, go back to your normal breathing pattern. 11
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survivorship
4
Therapeutic Art and Music
Using the arts to express yourself can be very comforting and helps to reduce stress and anxiety. Many cancer centers offer therapeutic art and music activities. You don’t have to be an artist or a musician to participate in these activities. Like journal writing, art and music offer a positive way to work through our emotions. Becoming involved with an art or music activity also provides a mini-retreat from the day-to-day challenges of cancer treatment.
5
BECOMING INVOLVED WITH AN ART OR MUSIC ACTIVITY ALSO PROVIDES A MINI-RETREAT FROM THE DAY-TO-DAY CHALLENGES OF CANCER TREATMENT.
achieving a STATE of
Yoga and Tai Chi
Another good strategy to help with stress is to use the mind-body practices of yoga or Tai Chi. Both activities combine gentle movements with breath work. It is best to find a teacher who has experience working with cancer survivors. Always talk with your oncologist or your navigator before starting a new physical activity.
calmness
If you are feeling that stress and anxiety are getting the better part of you, consider trying one or more of these activities. These 5 strategies can help you express yourself by using your body and mind to release stress and create a state of calmness. Remember, if you continue to experience stress and anxiety, and you find that it is interfering with your day-to-day living, talk to your healthcare provider and consider seeking supportive counseling to help you work through these challenges. ◆
PATIENT RESOURCES Health Journeys www.healthjourneys.com Susan Yaguda, RN, MSN Coordinator, Integrative Oncology, Levine Cancer Institute, Charlotte, NC
CancerCare www.cancercare.org/tagged/journaling Cancer.Net www.cancer.net/coping-and-emotions/ managing-emotions/managing-stress
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familymembers
a husband’s letter November 22, 2013
Dear Marian, I first want to apologize to you for taking this considerable time to communicate with you This letter after Barbara’s passing. I do believe that, if anyone, you will understand the reasons was written completely. It is still very difficult to speak, write, or even think of Barbara in the past by the husband tense. We have come to understand that our feelings are completely normal and of Mrs. Smyth, that only time will allow us to live with her loss. whose story The last two weeks after Barbara was released from the hospital, her condition appears on steadily declined. She did not actually lose consciousness until her last 24 hours. She page 14 wanted to see all her loved ones and old friends during her last 2 weeks so that she could say goodbye face to face, and we managed to do that. As always, she accepted her fate, never complained, and was strong for all of us. I feel sure that we, along with hospice oversight, managed to keep Barbara comfortable right until the end, and that her mind was separated from the distress that her body was experiencing, and was so very visually disturbing to all of us. I believe that our family did a great job of taking care of her through the period of her illness. I know that we were prepared to accept her death, but we never realized how devastating the loss of her presence in our daily lives would be. Life will never be the same for my family and me. As Thanksgiving approaches, we know that even with our great loss this past year, we have received many blessings. Among these blessings was the wonderful relationship that you offered and Barbara embraced during her time as a patient. Marian, it was very gratifying to us that she developed such an open, honest, and friendly relationship with you, as Barbara needed someone outside of the family to confer with on matters in which she needed confirmation or direct answers. We thank you for your support, affection, and your endearing qualities. Marian, in closing, my family and I want you to know we view you as the most important support factor during Barbara’s treatment at Dana-Farber. You played a major role in her determination to fight for every day of life that she could win, and helped her fully understand all of the issues that this battle contained. I feel that someday in the future, when my family is strong enough, we will meet again. Until that time, thank you, and God bless you.
Paul Smyth and family
MARIAN E. GILMORE, RN, OCN Nurse Navigator
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patientstories HAVING MY SUPPORT AS AN ONCOLOGY NURSE NAVIGATOR, MRS. SMYTH FELT A SENSE OF SECURITY AND SAFETY, AND I HELPED DECREASE HER FEARS AND ANXIETY.
H
By MARIAN E. GILMORE, RN, OCN Nurse Navigator, Multi-Specialty Clinic Dana-Farber/Brigham and Women’s Cancer Center, in clinical affiliation with South Shore Hospital South Weymouth, MA 14
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patientstories
g n i d l o H uhrannedys jo Cancer
through the
Since early childhood, it has been my dream to pursue a career in nursing. Many times, my journey has taken me on a path of caring for patients at the end of their lives. This began on a very personal level. Several months before our first daughter was born, my father’s brave battle with lung cancer ended and he succumbed to his disease. Our second child passed away from respiratory failure shortly after he was born. We were very lucky to have him in our lives for the short time we did, and he held tightly to our hands as he struggled for every breath before leaving us. When we found out we would be expecting our third child (our second daughter), my husband’s mother succumbed to her brave battle with breast cancer. When we discovered we were going to have twin sons, my husband’s father succumbed from mesothelioma. We spent many moments holding hands with our babies and our parents, at the beginning of life, throughout all treatments, and at the end of their lives. I believe my path to oncology had a natural course. We had become very good at saying goodbye to our loved ones. We were able to have all our family members at home throughout their treatment and to their final resting. 15
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patientstories a “voice” in her plan and was comfortable following the recommended procedures. The plan of care was for sigmoid colectomy. A colostomy was not a part of the plan, to her great relief. She recovered from surgery and was scheduled to begin chemotherapy; unfortunately, she tripped and fell, sustaining a broken humerus. Because of her humeral fracture and side effect of delayed healing with chemotherapy, treatment began 6 weeks after diagnosis.
MRS. SMYTH Mrs. Smyth and I first met at her initial consult to discuss a treatment plan for her newly diagnosed metastatic colorectal cancer. She had been feeling fine until a recent fall, where a chest x-ray revealed a lung mass and a biopsy demonstrated adenocarcinoma. Additional scans revealed that the cancer had spread to other parts of the body, including the lungs, mediastinum, and bone. The plan was to proceed with surgery to avoid the possibility of obstruction. After meeting with the surgical oncologist, I met with Mrs. Smyth and her family, reviewed her scans and pathology, and consulted professional guidelines. Mrs. Smyth held onto my hand through the whole visit. She was distressed over the news. I provided emotional support and offered the services of a social worker, which she accepted. The next day, Mrs. Smyth came to the clinic, and we began our weekly meetings and telephone conversations. At her request, the first “order of business” was to hold hands at our meetings and discuss the next step. Tailored education and patient involvement in decision-making have been shown to have a direct correlation with improved patient outcomes. Meeting as we did, she felt she
PALLIATIVE TREATMENT
STUDIES HAVE SHOWN THAT BEING SUPPORTED BY AN ONCOLOGY NURSE NAVIGATOR CREATES A PROFOUND SENSE OF SECURITY FOR PATIENTS AND THEIR FAMILIES AND HELPS TO DECREASE FEARS AND ANXIETY. h a d 16
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Mrs. Smyth knew from the beginning that her treatment was palliative, but she said she “would fight the good fight for as long as I can.” Our relationship became focused on the day-to-day events and acknowledging the beauty in each moment. I accepted her trust in me, and our relationship and friendship developed. She shared with me that her main focus was protecting her family. Studies have shown that being supported by an oncology nurse navigator creates a profound sense of security for patients and their families and helps to decrease fears and anxiety, thus allowing patients to process the tremendous amount of information coming at them. Mrs. Smyth knew the inevitable, and she did not want to burden her husband with her fears. I encouraged her
patientstories to meet with our social worker for support throughout her treatments, which she did, but she felt she had enough support without it and still wanted to meet and talk with me on a weekly basis. We talked about things that she did not want her family to hear, such as her fear that the chemotherapy would not give her the time she wanted, which it did not; her fear that there would be nothing left to try after the next round, which there was not; and about her fear of dying. Having my support as an oncology nurse navigator, she felt a sense of security and safety, and I helped decrease her fears and anxiety. I began calling Mrs. Smyth on a weekly basis or visiting her while she was receiving chemotherapy in the infusion suite. She liked to meet with me after her visits with the doctors. We would hold hands, dissect every scan and every pathology report, and talk about the regimen her doctor had proposed for the next round of treatment. She never quit, and would even prompt the doctor to find another treatment. I encouraged her to record her story or to keep a journal, but she was very hesitant. She feared she would write something negative, and she did not want her family to think of her as having suffered. She told me that she just wanted her family to know that she had a great life and loved them from the bottom of her heart. I promoted the use of hospice services by recognizing the short survival window, and I understood that she had end-of-life tasks to fulfill. At one time, I was out of work
for knee surgery, and Mrs. Smyth asked permission to call me at home, which I immediately agreed to. She was afraid of what would happen to her daughter, whom she was so close to, after she was gone. She was also
After recovering from her fall, a third line of treatment was initiated; her disease had progressed and her condition declined. She was aware of her decline and wanted to spend as much time at home as possible.
I AM HONORED TO HAVE BEEN A PART OF HER CARE TEAM AND TO HAVE HELPED MRS. SMYTH LEAVE THIS WORLD THE WAY SHE CHOSE, SURROUNDED BY LOVED ONES, WITH ONLY POSITIVE THOUGHTS PASSING THROUGH HER LIPS. afraid of how her husband would go through each day without her—she wanted him to continue living the life they shared. I encouraged her to share these feelings with him, and to let him know what she wished for him. We sometimes talked several times a week, and she often told me how I had helped her “accept my ordeal,” that I had “chosen the right career, because your attitude and confidence reflect in the way you treat your patients.” Many times at our visits, we just held hands and talked. She liked the physical touch of others; she was very affectionate, and she seemed to receive a great deal of comfort from holding hands. Mrs. Smyth completed chemotherapy, and her disease progressed. She began a second line of treatment, which she was unable to tolerate after 2 cycles. She also suffered a fall and was hospitalized. I would go to the hospital and visit her, hold her hand, and meet with her family. 17
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HOSPICE Her health began to fail 14 months after the initial diagnosis. I visited her in the hospital, and she held my hand, looked me in the eye, and said “I think the fight may be over.” We had a discussion about the value of hospice, that it was not giving up, and that they would help her live the way she wanted for the time she had. She was discharged to her home with hospice initiated at her request. Her condition deteriorated rapidly, our phone calls became less frequent. She would call and keep me updated on her condition, always stating that hospice was keeping her comfortable. Mrs. Smyth passed away on July 6, 2013, with her family at her side, as she had wished. I am honored to have been a part of her care team and to have helped Mrs. Smyth leave this world the way she chose, surrounded by loved ones, with only positive thoughts passing through her lips. ◆
from yournavigator
Navigating THE
OF
CONTINUUM
Cancer Care By CHERYL BELLOMO, BSN, RN, OCN, CN-BN
NAVIGATORS FACILITATE TIMELY ACCESS TO QUALITY MEDICAL AND PSYCHOSOCIAL CARE EVEN BEFORE THE DIAGNOSIS AND THROUGH ALL PHASES OF THE CANCER CARE EXPERIENCE.
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from yournavigator NAVIGATOR ROLES The role of a navigator is bidimensional and is centered on patient care, as well as on the healthcare system. While considering the patient needs along with the workings of the healthcare system, navigators can promote and ensure continuity of care for patients. Navigators may work in the community outreach or the screening aspect of the care continuum. They may also interact with patients at the time of their diagnosis, navigating you throughout the treatment
phase and the transition into survivorship, or if need be, to end-of-life care. Navigators may function in one aspect of the care continuum, or their role may encompass the entire continuum of care. Either way, navigators share the common goals of focusing on patients by guiding, educating, advocating for, supporting and encouraging, eliminating barriers, and providing resources to patients.
The Commission on Cancer recognizes patient navigation as individualized assistance that is provided to patients with cancer, their families, and caregivers to help overcome barriers to care, such as financial difficulties or transportation needs. Navigators facilitate timely access to quality medical and psychosocial care even before the diagnosis and through all phases of the cancer care experience.
COMMUNITY OUTREACH
Community outreach navigators help facilitate patient access to care by providing education on cancer, screening guidelines, wellness and prevention information, and community resources through health fairs and collaborating with community partners.
Key
POINTS
}O ncology navigators guide patients through community outreach programs, diagnosis, treatment, survivorship, and end-of-life care }N avigators ensure that patients and their families have the resources they need at each point in their cancer journey }A ll navigators share the same goal of providing continued patient-centered care
STAGES OF CARE
Navigators play an essential role at the time of the diagnosis and the treatment stages of care. During each stage, navigators provide patient-centered care in assessing patients’ coping and psychosocial skills, as well as educating and validating patients’ understanding of the diagnosis and the proposed treatments. Navigators function as interdisciplinary team members during the diagnosis and treatment aspects of the continuum of care. They assess patients and make appropriate referrals to other providers on the team, such as for clinical trials, genetics, palliative care for symptom management, and dietitian or nutritional support services.
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from yournavigator THE CONTINUUM OF CARE The role of the navigator continues through the transitions from treatment to survivorship and/or end-of-life care. Navigators are pivotal in assessing and addressing the rehabilitation needs and the long-term survivorship care needs of patients with cancer. Navigators can help patients transition to hospice care, and ensure that patients and their families have resources for end-of-life needs. Navigators are in a position to promote patient-centered and healthcare system–oriented care to patients with cancer and their families. Navigators help empower you and your family to move forward with the cancer journey with the support and resources you need Academy of Oncology Nurse & Patient Navigators to make informed decisions www.aonnonline.org along the continuum of Harold P. Freeman Patient Navigation Institute cancer care. ◆ www.hpfreemanpni.org/resources/
PATIENT RESOURCES
Cancer Patient Navigation www.cancerpatientnavigation.org/
Cheryl Bellomo, BSN, RN, OCN, CN-BN Oncology Nurse Navigator Intermountain Southwest Cancer Center Valley View Medical Center Cedar City, UT
American Cancer Society www.cancer.org/cancer/news/navigatorshelp-cancer-patients-manage-their-care
SUBMIT
Submit an article or article ideas to editorial@conquer-magazine.com and be published in a future issue of CONQUER™or online.
CALL FOR PAPERS Articles/ideas could include: • Financial planning
• Prevention • Spirituality • Management and treatment of specific tumor types including, but not limited to:
• Survivorship • Caregiver issues • Employer conversations • Nutrition • Patient stories •D evelopment of and talking to your healthcare team • Emotional well-being
• Gastrointestinal cancers
• Hematologic malignancies
• Melanoma
• Colorectal cancer
• Pediatric cancers
• Breast cancer
• Gynecologic cancers
• Neuroendocrine cancers
• Lung cancer
• Pancreatic cancer
Manuscripts submitted will be subject to an internal review to determine if the topic is appropriate for the scope and mission of the journal. Article length: 600-1200 words, submitted as a Word file. Include the article title, your full name, and contact information. Also submit your high-resolution headshot, saved as an image file. For more information, please call 732-992-1889.
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caregivers OFTEN, THE CAREGIVER LOSES CHARGE OF HIS OR HER LIFE, AND THE PATIENT’S ILLNESS SEEMS TO ALWAYS TAKE CENTER STAGE. CAREGIVERS NEED TO REMEMBER TO BE GOOD TO THEMSELVES AND TAKE CREDIT FOR THEIR HARD WORK.
TAKING
Care of the
caregiver
By CATHERINE M. POOLE PRESIDENT/FOUNDER MELANOMA INTERNATIONAL FOUNDATION Glenmoore, PA
Calls and e-mails coming into the Melanoma International Foundation navigation services from patients needing guidance and support are often initiated by a caregiver. The caregiver role has become increasingly important for comprehensive cancer care! Caregivers tend to keep a level head during this often emotionally charged time and, therefore, can keep better track of medications and side effects, as well as the general status of the patient.
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caregivers The psychological support provided by caregivers is vital to the patient, too. The Melanoma International Foundation’s primary mission is to empower these caregivers with knowledge of the disease and with therapy options backed by evidence-based science. This enables caregivers to work more effectively with the medical providers. It also makes the caregiver’s job a lot less stressful, since there are fewer surprises for all those who are involved, when they’re fully educated. Patient navigators are, in essence, caregivers too, so this applies to that profession as well. Having stressed the important role that a caregiver serves, also keep in mind that serving as a caregiver is sometimes harder than being the patient. Often, the caregiver loses charge of his or her life, and the patient’s illness seems to always take center stage. Caregivers need to remember to be good to themselves and take credit for their hard work.
Key
POINTS }R emember to recognize your hard work as a caregiver as your loved one’s illness becomes your priority
REMEMBER THAT THE PERSON YOU’RE CARING
}M ake sure to keep yourself healthy in the process
FOR IS VERY APPRECIATIVE
}K now that your loved one is grateful for your support
OF YOUR CARE, NO MATTER HOW THEY EXPRESS IT. 22
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caregivers
PRACTICAL TIPS Caregivers need their own space to vent, and to share their daily frustrations and victories. They also need to tend to their own needs. The following tips can help a caregiver during this time:
1
WATCH FOR SIGNS OF DEPRESSION IN YOURSELF
AND DON’T DELAY IN GETTING PROFESSIONAL HELP WHEN YOU NEED IT. THIS CAN INCLUDE: } F eelings of sadness, emptiness, or unhappiness } Loss of interest or pleasure in normal activities } Sleep disturbances, including insomnia or sleeping too much } T iredness and lack of energy, so that even small tasks take extra effort } C hanges in appetite: this often includes reduced appetite and weight loss, but increased cravings for food and weight gain occur in some people, too
2
WHEN PEOPLE OFFER TO HELP
accept the offer and suggest specific things that they can do. With family members, develop a plan of care and assign specific tasks. Get organized with a running list or a spreadsheet of what needs to be done
3
THERE’S A DIFFERENCE BETWEEN CARING AND DOING e open to technologies B and ideas that promote your loved one’s independence
4
TRUST YOUR INSTINCTS
most of the time they’ll lead you in the right direction
5
GRIEVE FOR YOUR LOSSES, AND THEN ALLOW YOURSELF TO DREAM NEW DREAMS Remember that the person you’re caring for is very appreciative of your care, no matter how he or she expresses it. If they are enduring pain or depression, it may be hard for them to express gratitude, but don’t doubt for a minute that your work is very important.
CAREGIVER RESOURCES Melanoma International Foundation http://melanomainternational.org American Cancer Society www.cancer.org/treatment/caregivers/copingasacaregiver Cancer National Institute www.cancer.gov/ cancertopics/pdq/supportivecare/caregivers/patient/page1
Catherine M. Poole
A full list of depression symptoms is available at www.mayoclinic.org/diseases-conditions/ depression/basics/symptoms/con-20032977
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patient & caregiverstories
r u O
IT’S CANCER Brenda
Steve
WE HAVE LEARNED A GREAT DEAL ABOUT THIS UNPREDICTABLE ILLNESS, WHILE ALSO GAINING A GREATER UNDERSTANDING OF HOW TO LIVE WITH CANCER, NOT ALONE, BUT AS A FAMILY. By BRENDA & STEVE, DETROIT, MI
As mother and son, we have shared a life that includes the common bond of cancer. For the past 6 years, multiple myeloma has been a common thread that has strengthened our relationship and has become a focal point of our family. We have learned a great deal about this unpredictable illness, while also gaining a greater understanding of how to live with cancer, not alone but as a family. Cancer affects not just the patient, but also the family and friends who make up the caregiving team. It is something we go through together.
BRENDA As a single mother of 4 children, I have always been a problem solver. In raising a brood of kids and
making sure there was food on the table, a roof over our heads, and clothes on our backs, I learned how to confront each situation with the goal of finding a solution, no matter how difficult the problem was. Sharing a house and a life with 4 rambunctious kids, and years of my adult life with 14 grandchildren, these instances were many and occurred almost daily. We made it through somehow. But nothing prepared me for perhaps the biggest challenge of 24
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my life, which came when I was diagnosed with multiple myeloma, a rare form of blood cancer. I have always found it interesting listening to cancer survivors talk about how they found out they had cancer when they were first diagnosed, and their initial reaction on hearing their doctor’s words. Acting upon instinct, like me, most people would turn to their primary care doctor for the type of ailment that never made them think that they had
patient & caregiverstories cancer: a sore shoulder, joint pain, stiffness in their lower back. None of these ailments jump out at me as something that might suggest that I have cancer. It was the same with me: during a routine visit with my doctor, he noticed irregularities in my blood tests, and on further testing, determined that I had multiple myeloma. I had never heard of multiple myeloma and thought he meant melanoma, which I knew was a type of skin cancer. Of course, we are all shocked to get such awful and unexpected news. It takes a while for it to sink in and to understand what it means.
ment. Mom never made a big deal of any family problems when we were kids, so when she called and told me that she might be having a small bout with cancer, and asked me to go with her to her next appointment, I reacted like an adult, not a kid. The adult in me knew that cancer is never “small,” and that her condition was probably much more serious than she was letting on. It was, even more so because it was a type of cancer completely unknown to any of us. There was much work to do in trying to understand Mom’s cancer, and how it already began
DURING A ROUTINE VISIT WITH MY DOCTOR, HE NOTICED IRREGULARITIES IN MY BLOOD TESTS, AND ON FURTHER TESTING, DETERMINED THAT I HAD MULTIPLE MYELOMA. During my second visit to my doctor, my cancer was confirmed. My son, Steve, accompanied me, and we heard the news together. After we got over the shock of what cancer “can do,” we quickly realized that we had to learn more about this form of cancer, how it might affect me, and the treatment options, not to mention my chances of survival. Ever the problem solver, it was time for “Team Brenda” to kick into gear. So, with Steve leading the way, he enlisted the support of my other 3 kids, Steve’s brother and 2 sisters.
STEVE I remember the call from my mother after her first doctor appoint-
attacking her. I am a very visual person, and rely on what I see to be the truth rather than what I or others may perceive it to be. So, when I saw Mom lying weakly in her hospital bed, I realized she was a far cry from the energetic and positive person we were used to. I knew it was serious. I realized that my mom’s doctors and medical team were capable of caring for the illness that resided in her body and affected her physically. However, if she were to get better, I mean really better, physically and emotionally, and actually beat this unknown cancer, it would take a team effort from all of us. That’s when Team Brenda was formed, consisting of Mom’s 4 kids. 25
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BRENDA After being referred to a myeloma specialist by my oncologist, my family and I became quick learners about everything regarding multiple myeloma. We listened to the oncologist, while also reading everything we could online about the disease: its cause, treatment options, and survival potential. Of course, most physicians are wary of all the information available online about specific diseases, because of the unknown sources for that information. Despite my oncologist’s concerns, my family and I tried to read online as much as we could about multiple myeloma. A cancer diagnosis is one of the scariest situations anyone can face. To me, the only way to erase my fear and the concern I saw on my family’s faces was to become educated. Knowledge was power. Leading the team was Steve, who went above and beyond the typical education process, and reached out to well-informed specialists and added them to my support team. My biggest fear was what this disease and the treatment regimen would do to me physically, and how that would affect
patient & caregiverstories my lifestyle. My oncologist’s recommended treatment included chemotherapy and a stem-cell transplant. I have always been very independent and loved not being limited by anything, especially a disease like cancer. So, Team Brenda took over, and began performing my daily tasks at home. They scheduled my treatment life, which included preparing questions in advance for my treatment team, and making sure I had an element of recreation between treatment and recuperation. It was a holistic approach, made easier and certainly more meaningful by the people helping me the most. If love were enough, I would have been cured on the spot.
STEVE A cancer diagnosis is overwhelming, because there is usually no advance warning, or in many cases, no outward signs of the disease. Cancer can be sneaky that way. And when you find out that you or a loved one has cancer, you have to go into overdrive and be prepared to deal with all aspects of the illness right away. Team Brenda had its work cut out for us. Even though the cancer blindsided us, I knew what had to be done. I am my Mom’s most sensitive kid, and we share a closeness based on that sensitivity. So when Mom was diagnosed, I contacted my brothers and sisters, and we began to discuss who would do what to help our Mom. We quickly decided that we had to do different things and take on individual tasks based on each
person’s availability, as well as our personal strengths.
PERHAPS THE BIGGEST LESSON WE LEARNED WAS NOT TO SWEAT THE SMALL STUFF, AND ONLY TRY AND CONTROL THINGS WITHIN OUR ABILITY. For example, my schedule had some flexibility, so my role would be more hands on. I would take Mom to appointments and meetings with her medical team. It was this involvement that allowed me to really understand what Mom was going through, and help her with some of the tougher decisions about her treatment.
BRENDA As much as my kids helped me during my illness, especially in the initial stages, I realized that I could not burden them with everything. Cancer affects a person in so many ways that patients have to realize that not just one person, or one small family group can help to provide the care we need. That is something I learned right away. Even though Steve and the rest of my kids were doing as much as they could, I quickly realized that I needed more resources. One month after my diagnosis, I joined a multiple myeloma support group. This group gave me some 26
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of the emotional support I needed, and the group members shared different stories and experiences about their illness, and I learned much just by listening to them. Sometimes what I heard in this group would help me with a problem I was having in my own experience with multiple myeloma. Or, it would provide me with questions to ask my doctor during my next appointment. As much as my children loved me and devoted their lives to helping me through my illness, they could not do what the support group did. It was a great learning experience, and it allowed me to form deep and meaningful relationships with so many wonderful people.
STEVE I’m happy and proud to say that Team Brenda held its own with Mom’s cancer. There were things that we were definitely good at, and others we struggled with. We were smart, though, to realize when we needed additional help for a particular issue, and we were not afraid to ask for it. Caregiving is really a series of small wins, and with each tiny victory, we learned so much. Perhaps the biggest lesson we learned was not to sweat the small stuff, and only try and control things within our ability. One thing Team Brenda definitely agreed on was that, compared with what our mother was experiencing, we had little to complain about. I tell people that my experience as a caregiver has improved my life, and I’m a much happier and more positive person than I was before. ◆
kidneycancer What You Need to Know About
KIDNEY CANCER By CHERYL BELLOMO, BSN, RN, OCN, CN-BN
Kidney cancer (also called renal cancer) is among the 10 most common cancers in men and in women. The American Cancer Society estimates that in 2015, 61,560 new cases of kidney cancer, 38,270 in men and 23,290 in women, will be diagnosed, and 14,080 patients will die from this disease in the United States. The lifetime risk for kidney cancer is about 1 in 63 (1.6%); the risk is higher in men than in women. RISK FACTORS
GENETIC FACTORS
Certain factors can increase the risk for kidney cancer. Perhaps the biggest risk factor is increasing age: being older than age 40 puts an individual at greater risk for kidney cancer. Certain lifestyle behaviors and medical conditions are also believed to increase the risk for kidney cancer. These include: • Cigarette smoking • Obesity •E xposure to environmental substances, such as asbestos, cadmium, benzene, and herbicides • High blood pressure • Kidney disease and long-term dialysis. People with a strong family history of kidney cancer, especially siblings, are at higher risk for this cancer. African Americans and American Indians/ Alaska Natives have slightly higher rates of kidney cancer than Caucasians.
There are genetic syndromes that run in families, such as defects (mutations) in the VHL, MET, FH, FLCN, SDHB, and SDHD genes, that increase the risk for kidney cancer. Defects in the SDHB and SDHD genes can cause Cowden-like syndrome, which puts people at greater risk for breast, thyroid, and kidney cancers. Therefore, it is important to let your physician know if anyone else in your family has been diagnosed with cancer.
SYMPTOMS Early kidney cancers do not usually cause any symptoms, but as the tumors grow larger, symptoms may appear. Possible signs and symptoms of kidney cancer include blood in the urine (hematuria); a lump or mass on the side or lower back; lower back pain on one side, not related to an injury; fatigue; weight loss; anemia; and swelling of the ankles or legs. 27
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kidneycancer TYPES OF KIDNEY CANCER Renal-cell carcinoma (cancer in the lining of the tubules of the kidney) is the most common type of kidney cancer. Approximately 9 in 10 kidney cancers are renal-cell carcinoma. Renal-cell carcinoma is divided into several subtypes, including clear cell renal-cell carcinoma; papillary renal-cell carcinoma; and chromophobe renal-cell carcinoma. Other types of kidney cancers include transitional-cell carcinoma (urothelial), Wilms tumor, and renal sarcoma.
TREATMENT Once a diagnosis is confirmed and the staging is complete, surgeons and oncologists can initiate the treatment plan. The types of treatment for kidney cancer include surgical removal of the kidney (nephrectomy), cryotherapy and radiofrequency ablation, radiation therapy, chemotherapy, and targeted therapy. Surgery is the main treatment for most kidney cancers. Because the kidneys are not very sensitive to radiation, radiation therapy is generally used for patients who cannot tolerate surgery or for palliative control of symptoms related to the spread of cancer.
DIAGNOSIS
TARGETED THERAPIES
At this time, there is no screening used in the general population to reduce the risk for kidney cancer. The diagnosis of kidney cancer is made with a physical exam; health history; laboratory tests, including blood work and urinalysis; and imaging tests, including ultrasound, intravenous pyelogram, CT scan, MRI, and renal arteriogram.
As researchers have learned more about what makes kidney cancer cells different from normal cells, newer drugs have been developed that “target” the specific cancer cells. These targeted drugs block the growth of new blood vessels that nourish cancer cells (angiogenesis) or important proteins (tyrosine kinases) that help the cancer cells to grow and divide. Targeted drugs, such as Nexavar (sorafenib), Sutent (sunitinib), and Avastin (bevacizumab), block the formation of new blood vessels in the cancer cells. Torisel (temsirolimus), Votrient (pazopanib), and Inlyta (axitinib) are targeted drugs that block tyrosine kinase proteins. Clinical trials are being conducted to further study targeted drugs, as well as immunotherapy (drugs that use the body’s own immune system to fight cancer) for the treatment of kidney cancer. ◆
POSSIBLE SYMPTOMS OF KIDNEY CANCER INCLUDE BLOOD IN THE URINE, A LUMP OR MASS ON THE SIDE OR LOWER BACK, LOWER BACK PAIN, FATIGUE, WEIGHT LOSS, ANEMIA, AND SWELLING OF THE ANKLES OR LEGS.
PATIENT RESOURCES American Cancer Society www.cancer.org/cancer/kidneycancer/
Cheryl Bellomo, BSN, RN, OCN, CN-BN Oncology Nurse Navigator Intermountain Southwest Cancer Center Valley View Medical Center, Cedar City, UT
National Cancer Institute www.cancer.gov/ cancertopics/types/kidney National Kidney Foundation www.kidney.org Kidney Cancer Association www.kidneycancer.org
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f o r a e F Recurrence survivorship
By G INGER MODIRI, SAN JUAN CAPISTRANO, CA
Wife, mother, and grandmother to 5 fabulous grandchildren who light up my life with their questions, enthusiasm, and innocence
A
nyone who has been given a cancer diagnosis knows how important patient care and follow-up visits are for keeping track of progress and staying ahead of any surprises, such as the cancer coming back. Cancer surgery is unlike having your appendix or gallbladder taken out; once those defective organs have been removed, they’re not going to grow back or recur. Unfortunately, cancer isn’t over once the tumor has been eliminated, and for some patients, it feels like it’s never going to be over! For me, the fear of recurrence weighed heavy on my shoulders, my attitude, and my ability to get up each day and move forward without fear of the cancer returning.
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survivorship
th a friend. Ginger (left) wi
“WILL THE FEAR EVER DISSOLVE? I CAN ONLY MOVE FORWARD
WITH MY LIFE AND WORK ON MY FEARS, WHETHER THEY ARE REAL OR FANTASY. I’M LOOKING FORWARD TO THE DAY WHEN THE THOUGHT OF CANCER RECURRENCE IS THE LAST THING ON MY MIND.
”
ANXIETY WITH EACH TEST
Well, first off, the technician took 3 rounds of films, Patients with breast cancer are monitored very leaving the room and checking with the radioloclosely. Of course, I’m extremely grateful for all gist each time. The last time she returned to the that attention. The only downside is that for the first exam room, I was told, “The radiologist wants to do 2 years after breast canan ultrasound.” I knew cer surgery, patients need from previous experiI’VE NEVER BEEN AN OVERto have a mammogram ence that this was now every 6 months. I found this turning into something REACTOR TO LIFE SITUATIONS, process to be positive and more serious. BUT EVIDENTLY CANCER negative at the same time. While I was waiting It’s great that I’m being for the ultrasound proHAS CONVERTED MY BRAIN’S seen so often, but just when cedure, I sent a text LOGICAL RESPONSES TO my brain would go back to my husband and to a normal state of calm my daughters about PROBABLY UNNECESSARY and well-being, it would be the unexpected news. PERSONAL HEALTH CONCERNS. time to go through the testMy brain immediately ing, lab work, and appointjumped to, “What surments with my surgeon, radiologist, and oncologist gery will I have? When will I have it? What if things once again. It definitely made 6 months pass more don’t turn out well? How will I mend? Will chemoquickly than ever before the cancer. therapy be involved? How and when will I return to Last October, I was set for a 6-month mamwork?” My brain was on a nonstop merry-go-round mogram procedure. “No big deal,” I told myself. and roller coaster ride. Talk about anxiety!
“
”
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survivorship Then, I received the good news. The results came back negative, and I was free to go on to deal with the rest of my daily routine. Of course, I took some time to shed a few tears, give thanks for my clear results, and for the love of my family. What a detour in the road I had that morning.
to me, the patient. Surprisingly, after my first visit with a different oncologist, I felt very calm and relaxed with his plan of treatment. Speaking to me as a layperson, in terms I could relate to, diminished a tremendous amount of underlying fear. It’s amazing how a different approach and presentation can affect a patient’s sense of security and well-being. I’m now approaching my third year of recovery, and living cancer free, so the day-to-day fears have diminished for the most part.
FEARING THE WORST We are all familiar with the phrase “mind over matter.” However, as hard as we try to stay positive and think rationally, it can sometimes be a challenge. Two months after the completion of my postsurgery radiation treatment, I found an unusual little growth on my wrist. My fight-or-flight response was, “Oh no, now I have skin cancer.” An appointment with my dermatologist determined it was just a “barnacle,” as he called it. I had a big sigh of relief. Another day, I had a bad headache. My first thought was, “What if it’s brain cancer?” I’ve never been an overreactor to life situations, but evidently cancer has converted my brain’s logical responses to probably unnecessary personal health concerns.
COPING WITH FEARS Recently, I attended a bimonthly support group with wonderful, awe-inspiring ladies, each dealing with new, past, and recurring breast cancer diagnoses. One woman in the group stated she was concerned about her upcoming mammogram, after 11 years of being cancer free. Her fears were real; I heard it in her voice, and felt her sense of the unknown, and all that could rearrange her future. At the end, this was another success story; she was fine, with no sign of cancer. I feel I’ve come a long way when it comes to worrying about things I have no control over. But will the fear ever dissolve? I can only move forward with my life and work on my fears, whether they are real or fantasy. I’m looking forward to the day when the thought of cancer recurrence is the last thing on my mind. ◆
CHOOSING THE RIGHT DOCTORS Earlier this year, I changed my oncologist. My original oncologist was a very good doctor, but I just didn’t feel we were communicating well. He was extremely clinical, handing me articles written for medical experts, written with words I couldn’t pronounce, and statements that meant nothing
AN OBSERVATION: When you surround yourself with grandchildren, or any children for that matter, the brain’s ability to think about cancer becomes very limited. The children go to the top of your list of priorities. They’re on the move, asking questions, laughing, playing, falling down, crying, and require 100% of our attention. There’s no time to think of the fear of recurrence in those environments.
family. Ginger with her
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financialsupport
Patient
9
Empowerment
Tips for Taking Control
1
By TRACY FOSTER, MBA
With some new medications, especially cancer medicines, having out-of-pocket monthly costs of $500 to $1,000 or more, it’s not surprising that medical debts make up half of all debt collections in the United States, according to a 2014 report from the Consumer Financial Protection Bureau. And another report suggests that 1 in 3 Americans has a hard time paying their medical bills, although most of these patients have health insurance. However, financial help exists.You should feel empowered to play an active role in your own care, and know that you can utilize many different resources for the care you need. Lash Group works with pharmaceutical manufacturers to assist you if you’re underinsured or uninsured, and provides information on access options for your medication. With more than 20 years of experience in healthcare, here are 9 tips that can help you afford your medication.
Understand Your Insurance
You often don’t know you’re underinsured until you need to use your health insurance. It’s important to know who provides your insurance, whether it’s Medicare, Medicaid, TRICARE, or a commercial health plan. You also need to know what your outof-pocket costs are, including copays and deductibles. Understanding the difference between primary and secondary coverage, and determining if the costs will fall under your plan’s medical or pharmacy benefit is a critical factor in figuring out how much you will need to pay for your treatment.
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financialsupport HAVING CANCER CAN BE OVERWHELMING, EMOTIONALLY AND FINANCIALLY. REACH OUT TO YOUR NAVIGATOR AND YOUR CARE TEAM IF YOU NEED FINANCIAL SUPPORT.
of Your Cancer Care Costs
2
Your Pharmacy Matters
To avoid unnecessary costs, it’s critical to use an in-network pharmacy. Sometimes, your physician does not administer your medication. In this case, you may need to get your medication from a specialty pharmacy, which is different from a local retail pharmacy. Your physician should verify where the prescription should be filled, and route it appropriately, especially if the physician is using a drug manufac-
turer reimbursement program or a hub service. Be careful with online pharmacies; the first rule is to skip any website that is selling cures or talking about things that “doctors don’t want their patients to know.” Steer away from nonlicensed or online pharmacies that offer to ship drugs from outside of the United States. This is not a reliable way to receive the accurate medication in the correct dosage.
3
Consider Crowdsource Funding
The rise of crowdfunding, defined by MerriamWebster as “the practice of obtaining needed services, ideas, or content by soliciting contributions from a large group of people and especially from the online community rather than from traditional employees or suppliers,” also has benefits for you if you’re struggling to afford your treatment. New crowdsource funding is a great way to help you and your caregivers raise money for medical expenses.
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financialsupport
4
6
Needymeds.org is a great resource and clearinghouse of information on 400 programs, offering nearly 4,000 free or discounted drugs. This website can benefit you regardless of your type of cancer, or whether you’re insured, underinsured, or uninsured. Some scholarships are also offered for students with specific medical conditions, and for students who have a parent or family member with a specific diagnosis.
If you receive treatment in a hospital, or in a practice that is affiliated with a larger health system, your healthcare provider can connect you with a caseworker or financial advisor. These experts may be able to help you qualify for financial assistance, and evaluate different payment options, including credit. If you have expenses and you’re having trouble making payments, you should consider medical mediation.
Get to Know Needymeds.org
Connect with Caseworkers
BE CAREFUL WITH ONLINE PHARMACIES; THE FIRST RULE IS TO SKIP ANY WEBSITE THAT IS SELLING CURES OR TALKING ABOUT THINGS THAT “DOCTORS DON’T WANT THEIR PATIENTS TO KNOW.”
5
Research Manufacturer Support Programs
Find out who manufactures your medication, and check online to see if the manufacturer provides a support program. Support programs help you afford and gain access to critical therapies. You can search the medication’s name and the terms, such as “patient assistance,” “copay assistance program,” “patient support,” or “patient services,” to find the drugs you need. Some programs will help with more than just the drug, by providing transportation and additional resources, including wigs, household bills, and groceries. This varies significantly by manufacturer, drug, and disease state, and is often an underutilized way for you to save time, effort, and money.
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financialsupport
7
Research Foundations that Provide Grant Funding You should research foundations that are committed to providing grants to you if you can’t afford your life-extending and life-saving medications. Online is an excellent place to start, and many grants are specifically focused on patients with cancer.
8
Find a Patient Advocacy Group
Many private- or government-funded organizations offer patient advocacy programs that can help you with the costs associated with your specific cancer medications. Organizations can cover one specific diagnosis, or whole categories, such as cancer or chronic medical illnesses. Some of these organizations are national in scope, while others are limited to certain states. Most organizations have eligibility requirements that are usually financially driven. Diagnosis-based assistance programs may cover many types of expenses, including drugs, insurance copays, office visits, transportation, nutrition, medical supplies, and child or respite care.
9
Stay on Treatment
Continue taking your medication for the full duration of treatment, even if you start to feel better. If you’re taking an oral drug, don’t skip a dose or cut it in half without explicit instructions from your doctor. If you’re using a therapy that requires injection or infusion at a doctor’s office, be sure to keep your appointments on schedule. If transportation is an issue, there are resources to help. If the cost of treatment is overwhelming, discuss this with your oncology care team. Having cancer can be overwhelming not only emotionally but also financially. Many patients are unprepared for such a life-changing moment, and immediately worry about the expensive treatments they may need. Reach out to your navigator and your care team if you need financial support. ◆
PATIENT RESOURCES Lash Group www.lashgroup.com Diagnosis-Based Scholarships www.needymeds.org/scholarships.taf Medical Mediation www.needymeds.org/inclusions/ medical_mediation
Tracy Foster President of Lash Group, a part of AmerisourceBergen, Charlotte, NC 35
Crowdsource Funding www.healfundr.org
June 2015 • Conquer-magazine.com
genetics &cancer THE MOST IMPORTANT THING YOU CAN DO REGARDING HEREDITARY RISK FOR CANCER IS LEARN ABOUT YOUR FAMILY HISTORY. FIND OUT WHO HAS HAD CANCER, WHAT ORGAN IT STARTED IN, AND AT WHAT AGE.
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genetics &cancer
c i t e n e G TESTING for
CANCER
Many people are surprised to learn that only about 5% to 10% of cancers are hereditary. Many people possibly assume that cancer is often hereditary, in part because of the press attention given to a number of celebrities who were found to be genetically at risk (for example, Angelina Jolie). Therefore, the information provided by genetic counselors is often more reassuring than expected. In some families, however, a defected (mutated) gene is being passed from generation to generation, which puts the family members at very high risk for cancer. For example, for patients with the BRCA1 or
BRCA2 gene, the lifetime risk for breast cancer is up to 85% (compared with 10% to 12% in other women), and the risk for ovarian cancer is up to 40% (compared with 1.5% in other women). For some hereditary colon cancer syndromes, the risk for colon cancer is 80% (compared with about 5% in other people). Other syndromes pose similarly increased risks for uterine, stomach, or thyroid cancers.
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By ROBERT PILARSKI, MS, LGC Licensed Genetic Counselor, Associate Professor of Clinical Internal Medicine Ohio State University Columbus, OH
EARLY DETECTION Given this degree of risk in some people, those with a hereditary risk need to be screened carefully to detect cancer at its earliest possible stage; this means starting screening at a young age, and doing tests more frequently than in other people. In some cases, some medications or lifestyle changes may help decrease the risk for cancer. Sometimes, removing the specific organ that is at risk for cancer may be the best preventive step. Ultimately, the goal of genetic testing is to identify the people who are at highest risk for cancer, and to give them recommendations for appropriate management of their risk.
genetics &cancer SOME GENERAL SIGNS ARE USUALLY SEEN IN FAMILIES WITH INHERITED CANCERS. ON AVERAGE, HEREDITARY CANCERS ARE DIAGNOSED 10 TO 20 YEARS EARLIER THAN NONHEREDITARY CANCERS.
SIGNS OF GENETIC RISK
MANAGING YOUR RISK
Because most cancers are not hereditary, how do you know if you may need genetic counseling and testing? There are some general signs that are usually seen in families with inherited cancers; of these, the most important is being diagnosed with cancer at an early age. On average, hereditary cancers are diagnosed 10 to 20 years earlier than nonhereditary cancers. This means that for patients with cancer that typically occurs in adults, such as breast cancer or colon cancer, the average age of diagnosis in families with hereditary cancer is around age 45, whereas the average age of diagnosis in the general population is around age 65. The bottom line is, the younger a person is at the time a cancer is diagnosed, the more likely it is that the cancer is hereditary. In addition to age of diagnosis, other common signs of a genetic risk include:
The most important thing you can do regarding hereditary risk for cancer is learn about your family history. Find out who has had cancer, what organ it started in, and at what age. Go back at least as far as your grandparents and cousins. If family members are uncertain about a cancer diagnosis in an older relative, it may be helpful to obtain a copy of their death certificate. Once you’ve done your homework, if your family has some of the warning signs mentioned above, talk to your doctor about the possibility of getting a referral for genetic counseling and testing. Most insurance companies now cover genetic services if you have a family history of cancer. At your appointment, your family history and medical history will be reviewed, and the likelihood of hereditary risk in your family will be discussed. The counselor will let you know if genetic testing is appropriate for you, and will help you decide if you want to pursue it. Once your sample is sent to the lab, results are usually available within 2 to 4 weeks. In the end, you will be given recommendations for cancer screening based on your family history and/ or test results, which will help you and your doctors know how best to manage your risk for cancer. ◆
• S everal • •
relatives with the same type of cancer M ore than 1 type of cancer in the same person; this does not include 1 type of cancer spreading or returning T he presence of cancers known to be genetically related, such as breast cancer or ovarian cancer.
PATIENT RESOURCES National Cancer Institute www.cancer.gov/ cancertopics/causes-prevention/genetics American Cancer Institute www.cancer.org/cancer/ cancercauses/geneticsandcancer/genetictesting/ genetic-testing-what-you-need-to-know-toc
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© Ronnie Kaufman/Larry Hirshowitz www.fotosearch.com
genetics &cancer
GENETIC RISK FACTORS
FOR
MULTIPLE MYELOMA
By KRISTEN CHANLEY
The risks for multiple myeloma, a rare and aggressive blood cancer, have long been linked to increasing age (older than 65), male sex, and African-American race. However, researchers are now looking into genetic risk factors to better understand and treat multiple myeloma. Multiple myeloma affects white blood cells found in bone marrow. Patients with blood cell diseases are at increased risk for multiple myeloma. Because plasma (blood) cells also play an important role in the body’s immune system, patients with autoimmune diseases may also be at a higher risk for multiple myeloma. For example, patients with pernicious anemia are 50% more likely to develop multiple myeloma than other people. 39
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genetics &cancer CHROMOSOME ABNORMALITIES
Researchers are now studying the genetic makeup of patients with multiple myeloma without preexisting conditions to look for additional genetic risk factors. Investigating how normal plasma cells become cancerous, scientists have found that normal blood cells can be affected by chromosome abnormalities or genetic changes. Chromosome abnormalities involve the number or structure of the chromosomes. About 50% of all cases of multiple myeloma are linked to the absence of chromosome 13. Another 40% of cases involve structural abnormalities in chromosomes, specifically translocation, or the mismatching of chromosome parts. These chromosome abnormalities explain the wide variation in how patients with multiple myeloma respond to treatment. Identifying an individual abnormality allows physicians to predict treatment outcomes for their patients, while researchers can continue to develop treatments specifically targeting high-risk abnormalities associated with multiple myeloma.
OTHER GENETIC RISK FACTORS
Researchers are also discovering genetic changes that form in multiple myeloma cells. Genetic changes that cause blood cells to become cancerous most often occur in what is known as “oncogenes,” which promote cell division, and “tumor-suppressor genes,” which slow down the rapid division of cells or cause cell death. Knowing when and where genetic changes occur affects how multiple myeloma should be treated. For example, some specific oncogene changes develop early in blood tumors, while other changes are not seen in multiple myeloma cells until after treatment. Changes in tumor-suppressor genes are associated with the spread of multiple myeloma to other organs.
MyPRS: NEW GENETIC TEST
The discovery of these genetic changes has led to the development of a test that provides a unique genetic profile of a patient with multiple myeloma. The test is called Myeloma Prognostic Risk Signature (MyPRS) and measures the levels of 70 risk-related genes, offering a risk score for relapsed disease that is unique to each patient, which allows for personalized treatment. In February, the FDA approved the use of MyPRS as a criterion for patients entering into a new clinical trial for patients with high risk for multiple myeloma.
PATIENT RESOURCES Multiple Myeloma Research Foundation www.themmrf.org/multiple-myeloma/multiple-myelomacauses/myeloma-risk-factors/genetic-factors/ International Myeloma Foundation www.myeloma.org/Main.action
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prostatecancer
T O N Decision, A Prescription
PROSTATE CANCER SCREENING:
A
MEN’S RISK FOR PROSTATE CANCER INCREASES WITH AGE, ESPECIALLY AFTER AGE 50. A VAST MAJORITY OF PROSTATE CANCERS ARE DIAGNOSED AT AGE 65 AND OLDER. By FRANK DELA RAMA, RN, MS, AOCNS
Men are often not clear about how prostate cancer screening should be done. This is not as simple as having a prostate-specific antigen (PSA) blood test and a rectal exam at a particular age.
P
rostate cancer screening is complex. Men, and even some physicians, often get confused because of the controversies surrounding screening: “What’s a normal PSA test?” “When would I need a biopsy?” “I hear that some men diagnosed with prostate cancer may not even need treatment.” Prostate cancer screening is crucial to determine the course of action if a cancer is found. The main options when prostate cancer is diagnosed are
surgery, radiation, or active surveillance, such as PSA tests, rectal exams, and periodic biopsies. Most men in their 40s to 70s could feasibly take one of these actions if prostate cancer is found, so screening is important. By contrast, the reason we don’t routinely screen an 80-year-old man with multiple medical issues or a man in his 20s is because the risks associated with all the available treatment options outweigh the benefits for these men. 41
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prostatecancer The issue of PSA screening is so multifaceted that decision aids are available so that men can go through a stepwise process with their healthcare provider to help determine if the test is right for them. The American Urological Association (AUA) and the American Society of Clinical Oncology (ASCO) have excellent decision aid tools online. These decision aids include a review of the basic science and clinical implications of the tests, and listing the tests’ wellfounded benefits and risks. These tools also challenge men to systematically consider all the “what if” scenarios, prioritize these possibilities, and consider how the outcomes may impact their lives.
RISK FACTORS According to ASCO, the major clinical risk factors for prostate cancer include age, race/ethnicity, and a family history. AGE. Men’s risk for prostate cancer increases with age, especially after age 50. A vast majority of prostate cancers are diagnosed at age 65 and older. RACE/ETHNICITY. AfricanAmerican men have a higher risk than white men. African-American men are also more likely to develop prostate cancer at an earlier age, and to have aggressive tumors that grow quickly. The exact reasons for these differences are unknown, and may involve socioeconomic factors. Hispanic men have a lower
PSA SCREENING RECOMMENDATIONS Men who have these risk factors may want to consider PSA screening, starting as early as age 40 or 45. Men who don’t have any of these risk factors and are not having any severe urinary symptoms may be less inclined to screen aggressively. PSA screening every 2 years instead of every year is an option for some men. The 2013 AUA guidelines have addressed this concisely in 5 statements:
1 2 3 4 5
T he panel recommends against PSA screening in men under age 40, because of the low risk and the lack of evidence demonstrating benefit of screening The panel does not recommend routine screening in men between ages 40 and 54 who are at average risk F or men ages 55 to 69, the decision to undergo PSA screening should be based on the man’s preferences after discussion with his provider; the greatest benefit of screening is in this age-group Routine screening interval of 2 years or more may be preferred over annual screening in men who have decided on screening outine PSA screening is not recommended in men aged R 70 or older with less than a 10- to 15-year life expectancy, but those in excellent health may benefit from screening
Without any clear, concrete prescription for prostate cancer screening, plus the variability of the screening risks and benefits, men need to discuss these issues with their physicians. Even in a roomful of men of the same age, race, and similar family history, prostate cancer screening plans can vary for each of them. Through shared decision-making, men and their healthcare providers can best construct a plan that optimizes the physical, psychosocial, and practical aspects of prostate cancer screening to improve their overall quality of life.
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prostatecancer risk for prostate cancer and for dying from the disease than white men. Prostate cancer occurs most often in North America and northern Europe. Prostate cancer also seems to be increasing among Asian men living in urbanized environments, such as Hong Kong, Singapore, and North American and European cities, particularly among men who have a more Western lifestyle. FAMILY HISTORY. If a man has a first-degree relative, meaning a father, a brother, or a son, with prostate cancer, his risk for prostate cancer is 2 to 3 times greater than average. This risk increases with the number of relatives who have been diagnosed with prostate cancer. Prostate cancer often begins when one or more genes in a cell change (mutate), causing cells to multiply uncontrollably and become cancerous. About 75% of prostate cancers are considered sporadic, meaning that these genetic changes occur by chance after a person is born. Prostate cancer that runs in a family, called familial prostate cancer, is not very common, accounting for about 20% of cases. Familial prostate cancer occurs as a result of a combination of shared genes and shared environmental or lifestyle factors. Hereditary prostate cancer (when the cancer is inherited) is rare, and accounts for about 5% of cases. Hereditary prostate cancer occurs when genetic changes are passed down within a family from one generation to the next. This type of cancer may be suspected if a man’s family history includes 1 of 3 characteristics: • 3 or more first-degree relatives with prostate cancer • 3 generations of prostate cancer on the same side of the family
•2 or more close relatives, such as a father, brother, son, grandfather, uncle, or nephew, on the same side of the family diagnosed with prostate cancer before age 55 Hereditary breast and ovarian cancer (HBOC) syndrome is associated with mutations in the BRCA1 and/or BRCA2 genes that are related to breast cancer. HBOC syndrome is most often associated with an increased risk for breast and ovarian cancer in women. However, men with this hereditary syndrome also have an increased risk for breast cancer and prostate cancer. Mutations in the BRCA1 and BRCA2 genes are thought to cause only a small percentage of familial prostate cancers. Genetic testing for prostate cancer may only be appropriate for families with prostate cancer that may also have HBOC syndrome.
TREATMENT OPTIONS The treatment for prostate cancer is determined once the cancer has been diagnosed, and can include: • Watchful waiting/active surveillance • Surgery • Radiation therapy • Hormone therapy • Chemotherapy • Cryotherapy • Vaccines • Targeted drugs directed at the bone The treatment you choose should take into account your age and life expectancy, any serious health conditions, the cancer’s stage and grade, the feeling of urgency that you and your physician have regarding treatment, potential side effects, and the likeliness of being cured. ◆
PATIENT RESOURCES American Society of Clinical Oncology www.cancer.net/cancer-types/ prostate-cancer/risk-factors-and-prevention
Frank dela Rama, RN, MS, AOCNS Clinical Nurse Specialist Oncology/Genomics CANCER CARE Palo Alto Medical Foundation, CA
American Urological Association www.auanet.org/education/guidelines/ prostate-cancer-detection.cfm
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from yournavigator “AS PATIENTS ARE NAVIGATED AND PARTICIPATE IN TRIALS, THE NAVIGATORS REINFORCE THE
EDUCATION ABOUT TRIALS AND, IN SOME CASES, ARE ABLE TO OFFER TO A PATIENT THE OPPORTUNITY TO TALK TO A PREVIOUS PATIENT WHO PARTICIPATED IN THE SAME STUDY.”
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from yournavigator
CONSIDER
Participating in a clinical trial By SHARON S. GENTRY, RN, MSN, AOCN, CBCN
Clinical trials may be a good treatment option for some patients with cancer, but these trials can be difficult to understand. Dr. Susan Gubar, a retired professor of English at Indiana University and author of Memoir of a Debulked Woman, which discussed her experience with ovarian cancer, recently wrote a New York Times blog post called, “Living With Cancer: Clinical Trials Looking for Patients.” In this post, she voiced her frustration with finding a suitable clinical trial and described the clinicaltrials.gov website as daunting. Dr. Gubar wrote, “Patients coping with enervating symptoms and fears may find it impossible to search through hundreds of trials involving their disease. At many cancer centers, there is no research officer to help patients locate suitable trials.” Well, there may not be a research officer, but many cancer centers have nurse navigators who can help patients with clinical trials. The nurse navigator provides and reinforces education to patients, families, and caregivers about cancer diagnosis and treatment options, as well as clin-
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ical trial education and screening. The nurse navigation workflow is patient-centered and health system oriented, so if the nurse navigator does not feel competent in discussing trial options, he or she can direct you to someone in the system who can have an informed discussion with you. And, clinical trials are not always about treatment; they can involve other aspects of the cancer journey. The 4 types of clinical trials for cancer include prevention, screening, supportive care, and treatment trials.
June 2015 • Conquer-magazine.com
from yournavigator
SCREENING TRIALS Screening trials examine new ways to find disease early and reduce the number of deaths caused by cancer. This type of trial involves ways to find the disease early, before a person has a symptom, or different ways of comparing screening tests. Another goal is to prevent people from undergoing unnecessary follow-up tests and medical procedures after a screening exam. An example of a screening trial is the National Lung Screening Trial, which compared whether screening with a low-dose helical CT scan versus a chest x-ray reduced lung cancer– specific mortality in participants who are at high risk for lung cancer. The trial demonstrated a relative reduction in lung cancer–specific mortality of 20.0% with the CT screening after a follow-up of more than 6 years. Medicare and private insurance now cover annual CT scans for people aged 55 to 74 who have a smoking history of 30 pack-years and who are still smoking or have quit within the past 15 years.
Key
POINTS
} The current 4 types of clinical trials include prevention, screening, supportive care, and treatment } Clinical trials can be difficult to understand and access, but your nurse navigator is there to guide you } Your nurse navigator can connect you with research nurses for further information on current clinical trial options
TREATMENT TRIALS Treatment trials look at new drugs but may also address new types of surgery, radiation, or vaccines. An exciting advancement is treatment trials that involve testing cancer cells for the presence of specific molecular markers. These markers can include changes (mutations) in a patient’s specific genes or proteins, and this is focused on specific tumors, such as breast or lung tumors. Some examples are ALK mutations (changes in the ALK gene) in patients with lung cancer who receive targeted therapy with ALK inhibitors, or patients with HER2-positive breast cancer who receive Herceptin (trastuzumab) or Perjeta (pertuzumab).
SUPPORTIVE CARE TRIALS Supportive care trials may look into issues related to quality of life, side effects, or palliative care for patients with cancer. Again, these trials can either involve a drug or an activity. For example, a supportive care trial may explore drugs that can help improve sleep disorders, pain, nausea, or eating concerns. It can also explore activities such as exercise, which can help address fatigue, depression, or other health concerns. 46
June 2015 • Conquer-magazine.com
PREVENTION TRIALS Cancer prevention trials involve people who don’t have cancer but who have a high risk for developing the disease. Family members of patients with cancer may be motivated to participate in these trials because they are experiencing cancer from a personal standpoint with a loved one. They may be assessing their own cancer risk and ways to reduce the risk for developing cancer. These trials usually involve prevention treatment, such as taking medications, vitamins, or dietary supplements. Prevention trials are typically suited for people who have had cancer and are at risk for developing a new cancer, or they do not have cancer but are at high risk for the disease or have a family history of cancer. Prevention trials focus on exercise or doing something to try to prevent cancer, or adding certain items to the diet, such as fruits or vegetables.
from yournavigator be very overwhelming with intimidating language and research terms. You will always receive a copy of anything you sign, and you can withdraw from a study if needed. At our institution, navigators are involved in clinical trials screening and education. The navigators don’t function as a research nurse, but are connected to the nurse that oversees clinical trials for the specific patients we navigate. The research nurse keeps the navigators up to date on new trials and their participation criteria. She is only a phone call away if questions come up during the interview regarding a patient meeting the trial criteria. As patients are navigated and participate in clinical trials, the navigators reinforce the education about trials and, in some cases, are able to offer to a patient the opportunity to talk to a previous patient who participated in the same study.
THE ROLE OF YOUR NAVIGATOR With so much going on in the world of clinical trials, your nurse navigator is a connection point. You can be so overwhelmed at first, but the navigator can confirm that you meet the criteria for trial participation and provide a future contact personally or by a research nurse in a few days. Family members interested in prevention or screening trials can always call the navigator later when they feel they have the time to discuss a trial or the ability to participate in a study. You can expect an explanation in layman’s terms on the purpose of the trial, what your responsibilities will be to participate in the trial (drug, activity), any extra commitment to scans or blood draws, and whether you will be compensated for time and expense. Be prepared to be walked through the written documentation about the trial, because it can
IT IS ALL ABOUT CONNECTIONS TO THE RESEARCH TEAM AND THE AVAILABLE CLINICAL TRIALS AT A SPECIFIC CANCER CENTER. JUST ASK YOUR NURSE NAVIGATOR! These patients were placed into the treatment group based on the molecular makeup of their tumor, not the type of tumor. An umbrella study has many different arms under the umbrella of a single trial, which allows the researchers to test a variety of targeted therapies at the same time in patients who are most likely to benefit. In “basket trials,” new treatments designed for a specific genetic change in a tumor are being tested in different cancers. One example involves patients with colon cancer and ovarian cancer who were assigned to their own “baskets” or groups within the same study. This type of study allows for new therapies to be evaluated in patients with different tumor types. ◆
PROMISING NEW STRATEGIES A recent article featuring Dr. Sandra M. Swain, Medical Director of the Washington Cancer Institute, offers insight into new strategies that may lead to the best promise of progress in cancer care. She describes the development of new treatments in new types of clinical trials that could lead to more effective therapies, with fewer side effects. Dr. Swain describes “umbrella trials,” which enroll patients with the same type of cancer but with different genetic changes (mutations). Sharon S. Gentry, RN, MSN, AOCN, CBCN Breast Cancer Nurse Navigator, Novant Health Derrick L. Davis Cancer Center, Winston-Salem, NC
PATIENT RESOURCES National Institutes of Health www.clinicaltrials.gov National Cancer Institute www.cancer.gov/clinicaltrials
47
June 2015 • Conquer-magazine.com
cancerrehabilitation
DEALING NEUROPATHY with
associated with chemotherapy By BRIAN D. McMICHAEL, MD Assistant Professor-Clinical Department of Physical Medicine & Rehabilitation Ohio State University Columbus, OH
Q
I finished chemotherapy 3 months ago and am struggling with numbness and tingling in my feet. I’ve been tripping more than usual, and fell down on my driveway last week during a rainstorm. Fortunately, I only bruised my hip, but I’m worried that I may break a bone next time. My doctor says I have neuropathy from the chemotherapy. Will it get better? Is there anything I can do to improve my balance?
The problem you are describing is called chemotherapy-induced peripheral neuropathy (CIPN). It is very common among cancer survivors. The problem happens in the nerves in our body (the peripheral nervous system), outside of our brain and spinal cord (the central nervous system). 48
June 2015 • Conquer-magazine.com
cancerrehabilitation Online Exclusive Content Recommendations for CIPN Prevention
Conquer-magazine.com
To some degree, neuropathy affects between 30% WHO IS AT RISK? and 40% of cancer survivors who receive chemoThe factors that predict who is at risk for severe or therapy. It is believed to be a side effect of some persistent CIPN are not completely clear. However, chemotherapies. The chemotherapies most often the risk for CIPN and for more severe symptoms is associated with CIPN are: linked to higher-dose chemotherapy, and/or higher Platinum-based drugs: Platinol (cisplatin), Paraplatin total doses of chemotherapy. (carboplatin), Eloxatin (oxaliplatin) Certain people may be at higher risk for CIPN, Taxanes: Taxol (paclitaxel), Taxotere (docetaxel), including people who already have neuropathies, Jevtana (cabazitaxel) or those who have diabetes, autoEpothilone: Ixempra (ixabepilone) immune disorders, digestive disorBE SURE Other mitotic inhibitor: Halaven ders, malabsorption disorders, or (eribulin) those who drink alcohol excessively. THAT YOU HAVE Vinca alkaloids: Oncovin (vincrisWAYS TO SUPPORT Symptoms such as CIPN can also be tine), Velban (vinblastine), Navelbine caused by a cancer that is progressYOURSELF IF YOU (vinorelbine), Etopophos (etoposide) ing or spreading. Immunomodulators: Thalomid (thaBecause the causes for neuropaHAVE PROBLEMS lidomide), Revlimid (lenalidomide), thies can be other than CIPN, it is imWITH STUMBLING Pomalyst (pomalidomide) portant to find out what is the cause. WHILE Proteasome inhibitors: Velcade (bortezomib), Kyprolis (carfilzomib) DIAGNOSIS WALKING. The first step in recognizing neuropaTHE SYMPTOMS OF CIPN thy is to talk with your oncology team. Mild to moderate numbness, tingling, and pain in the You can discuss your symptoms, including the onset, hands and feet are common in CIPN. The pain is often location, and how they have changed over time. described as burning, stabbing, throbbing, shooting, Your oncology team may also review any preexisting or electric. Itching can also be related. Difficulty in medical conditions that can cause similar symptoms. feeling vibrations, or difficulty in telling the position of Your oncology team may also order lab tests to a body part without looking at it can also occur. look for metabolic problems and nutritional deficienWith platinum-based drugs, the symptoms can cies. They may also explore whether the cancer is occur after long-term therapy and may develop progressing, and review and adjust your chemotherseveral weeks after the last chemotherapy dose. apy regimen as needed. Muscle weakness sometimes occurs at the far ends Some patients will also have neurodiagnostic of the limbs, such as the ankles, feet, toes, hands, or tests, such as electromyography, nerve conduction fingers. A reduced or absent Achilles tendon reflex studies, and quantitative sensory tests. sometimes also happens. Sometimes, CIPN involves the autonomic nervous TREATMENT OPTIONS system. This can cause digestion issues, constipation, Medications are available to reduce the pain and diarrhea, nausea, or vomiting. Blood pressure and sensory symptoms related to CIPN. There is good heart rate can also be affected, causing dizziness evidence showing the benefits of Cymbalta (duloxwhen getting up, or abnormal heart rhythms. etine). Doctors often try other medications that are Sometimes the peripheral nerves may be able helpful for other neuropathies, but good evidence to repair themselves, and the symptoms are often for these helping in CIPN is not yet available. A physirelieved over time. This repair process, however, is cian may try treatments such as: slow. If the damage is too severe, the symptoms may • Patches or numbing cream, such as lidocaine persist and not go away. patches or capsaicin cream, which can be 49
June 2015 • Conquer-magazine.com
cancerrehabilitation applied to smaller painful areas •S mall doses of antidepressants, such as Pamelor (nortriptyline), Elavil (amitriptline), Effexor (venlafaxine), or Cymbalta (duloxetine) • Antiseizure medicines, including Neurontin (gabapentin) and Lyrica (pregabalin), used to help other types of nerve pain •O pioids may be tried if the pain is severe and chronic It may take more than one try to find out what works best for you.
SPECIALIZED CARE Your oncology team may refer you to a physiatrist (a doctor who specializes in rehabilitation), a physical therapist, or an occupational therapist for evaluation
and treatment. The physiatrist may do some imaging, lab and/or neurodiagnostic tests, as well as bracing and certain injections. The physiatrist may also identify and treat other pain causes that affect your mobility and quality of life, such as arthritic joints or bursitis. A physical therapist can help survivors with CIPN to improve balance, gait, and coordination. An occupational therapist can help survivors with fine motor skills and dexterity. Occupational therapists can visit your home to help you with walking or getting around in your home and com-
munity safely. They may also try therapeutic modalities, such as desensitization or manual lymph drainage. They may find that using a cane or a walker may make a big difference in your steadiness. These interventions help to decrease falls and injuries, while increasing physical function, independence, and quality of life. You also can try: • Relaxation therapy • Guided imagery • Distraction • Acupuncture • Biofeedback ◆
TIPS FOR MANAGING CIPN to help you take charge of your health and safety: } Taking
medicines as prescribed by
full attention to your task. Protect your
of the heel. Always wear shoes that
your doctor. Most as-needed pain
hands by wearing gloves when you
cover your whole foot when walking,
medicines work best if they are taken
clean, work outdoors, or do repairs
even at home. Talk to your doctor
before the pain gets bad
} Set
about special shoes
} If constipation
hot water heater thermostats
is a problem, follow
between 105°F and 120°F to reduce
} Be
your doctor’s recommendations about
risk of accidental scalding. Check
port yourself if you have problems with
laxatives, other medications, and ex-
bath water with a thermometer, and
stumbling while walking. Handrails in
ercise. Drink plenty of water and eat
use gloves when handling hot dishes
hallways and bathrooms may help you
fruits, vegetables, and whole grains to
or pans
keep your balance
get enough fiber
} Protect
} Avoid
yourself from cold weather
sure that you have ways to sup-
} If you
often get dizzy when getting
things that make your CIPN
and frostbite. Keep your hands and feet
up, rise slowly, and then give your
worse, such as hot or cold tempera-
warm and well covered. For example,
body a little extra time to adjust before
tures, snug clothes, and tight shoes
consider keeping a pair of gloves in
standing. Then again give your body
} Stop
your car. Avoid extreme temperatures
extra time to adjust before walking
neuropathy and make CIPN worse
} Use
} Give yourself extra time to do things,
} If you have diabetes, work to control
walking around in the dark
and ask for help with difficult things
your blood sugar. High blood sugar
} Make sure to take care of your feet.
} Talk
levels can also cause neuropathy
Look at them once a day to see if you
mary care physician about the prob-
} If you
drinking alcohol; it can cause
night-lights or flashlights when
to your oncology team or pri-
have decreased sensation in
have any injuries or open sores. Use a
lems you are having. They may be able
your hands, be very careful when using
mirror, or have someone else look at
to treat your symptoms and reduce
knives, scissors, and other sharp objects.
the areas of your feet that you cannot
the risk for CIPN worsening, or help you
Use them only when you can give your
easily see, such as the soles or back
to improve your physical function
50
June 2015 • Conquer-magazine.com
Story
bookreview
THE
OF
CANCER
By ERICA IANTUONO, PHARMD
THE ERA OF CHEMO Starting with a recent era of cancer treatment, Mukherjee gives an astounding account of Dr. Sidney Farber’s impact on leukemia treatment and its eventual cure. Dr. Farber is the originator of modern chemotherapy. He founded the Children’s Cancer Research Foundation, now known as the
Dana-Farber Cancer Institute, the first institution dedicated to caring for children with cancer. Stemming from a closet-sized office in the basement of Boston Children’s Hospital, Dr. Farber’s relentless pursuit to cure childhood leukemia is awe-inspiring. From his initial concept of the “antivitamin” to concocting multidrug regimens to combat leukemia, Mukherjee depicts the challenges and victories that Dr. Farber experienced at Boston Children’s Hospital. The road to the first cure for ALL tested the will of the young patients with leukemia who received multidrug chemotherapy regimens, as well as the doctors concocting chemo combinations and supporting these patients until the end of their treatment. With this leap of faith, along with the first chemo drug (aminopterin), and the creation of the first combination chemotherapy regimen, children went from surviving only a few months to surviving up to 6 months, and then to surviving for years and decades. This glimmer of hope in an otherwise gloomy, discouraging time fueled politicians and activ51
June 2015 • Conquer-magazine.com
“ Cancer was an
all-consuming presence in our lives. It invaded our imaginations; it occupied our memories; it infiltrated every conversation, every thought.” —Siddhartha Mukherjee, MD, PhD
Photo © by Deborah Feingold
I
n The Emperor of All Maladies: A Biography of Cancer, Siddhartha Mukherjee, MD, PhD, Assistant Professor of Medicine at Columbia University, travels through time to tell the story of cancer. The book begins with a gripping tale of a young woman, Carla, and the clinical whirlwind that consumed her when she was first diagnosed with acute lymphoblastic leukemia (ALL). Mukherjee establishes a relationship between the reader and Carla, inviting the reader to learn about the trials and tribulations she faces with this diagnosis, and her experiences during treatment and acceptance of her disease. He weaves a fine thread of history into Carla’s story, exposing the foundations of the history of cancer.
bookreview ists, such as Mary Lasker, a key health activist and philanthropist in the 1940s-1960s. She lobbied for medical research in cancer. Mukherjee described how she joined forces with Dr. Farber, and how they transformed the American Society for the Control of Cancer to the current American Cancer Society.
“
an Egyptian physician, Imhotep, scribbled hieroglyphics illustrating the first account of breast cancer, which he described as a “bulging tumor” that had no treatment. In 400 BC, Hippocrates introduced the first word for cancer, “karkinos,” from the Greek word for “crab,” which described the blood vessels feeding the tumor.
patient survival, and reinforced its “magic bullet” nickname.
PUTTING CANCER INTO PERSPECTIVE Mukherjee keeps Carla as a cornerstone of his “biography” of cancer, ending with the fact that her cancer remains in remission 5 years after her first treatment,
IF WE, AS PHYSICIANS, FOUND OURSELVES IMMERSED IN CANCER, THEN
”
OUR PATIENTS FOUND THEIR LIVES VIRTUALLY OBLITERATED BY THE DISEASE. —Siddhartha Mukherjee, MD, PhD
THE WAR ON CANCER Lasker also played a valuable role in convincing the US government to fund what was called “the war on cancer,” and the National Cancer Act was signed by President Richard Nixon in 1971. Mukherjee discusses the war against the tobacco industry, and the eventual recognition that smoking was harmful. From the National Commission on Smoking formed by President John F. Kennedy and led by Surgeon General Luther Terry, to the Rose Cipolone trial, the politics surrounding the harm of smoking captured the country’s full attention. As the correlation between smoking and cancer became more apparent, lung cancer deaths in older women rose 400% in the 15 years after Nixon declared war on cancer.
CANCER’S ANCIENT HISTORY Mukherjee also tells readers about the first signs of cancer in ancient times. As far back as 1600 BC,
In 160 AD, Galen described cancer as a static black bile that congealed into a mass. Galen’s description was one of the first theories that cancer was a systemic malignancy rather than isolated tumors.
FIRSTHAND EXPERIENCE Mukherjee closes by sharing his own experiences with patients with cancer, continuously weaving new innovations in oncology with his approach to care. He recounts the “magic bullet,” also known as Gleevec (imatinib), which was one of the first targeted drugs for chronic myelogenous leukemia (CML). Gleevec changed the scope of practice of CML, and this new oral medication is a reminder of the revolutionary innovations in contemporary cancer treatments. Using Gleevec for the treatment of patients with gastrointestinal stromal tumors (also known as GIST) significantly improved 52
June 2015 • Conquer-magazine.com
where the book began. This book is written with the layperson in mind, expertly explaining the history of cancer to develop a foundation for understanding the movements to prevent, treat, and cure cancer in the future. Mukherjee incorporates the details of each historical event, while also embedding professional training in cancer, adding a more personal touch to this magnificent book. This comprehensive and exhilarating account of the history (or story) of cancer is extremely engaging and lively, and has recently been turned into a TV series. It puts a difficult topic into a perspective that allows all readers to understand the past, present, and future of cancer. ◆
Erica Iantuono, PharmD, PGY-1 Pharmacy Resident Massachusetts General Hospital Boston, MA
Patient Navigator Track • Saturday, October 3, 2015 AGENDA* 6:45 am – 8:00 am
Breakfast in Exhibit Hall
11:00 am – 11:45 am Interviewing and
8:30 am – 9:00 am
Welcome and Introductions from Program Chairs Lillie Shockney, RN, BS, MAS, CBPN-IC Sharon Gentry, RN, MSN, AOCN, CBCN
11:45 am – 1:15 pm
Lunch and Networking
1:15 pm – 1:45 pm
Communication Helen Meldrum, PhD
1:45 pm – 3:00 pm
Role of the Navigator on the Multidisciplinary Team: Ethics, Boundaries, and Teamwork Adrienne Thomas Richard J. LoCicero, MD
3:00 pm – 3:15 pm
Break
3:15 pm – 4:15 pm
Cultural Competency Jean Sellers, RN, MSN
10:10 am – 10:45 am Review of GW Cancer
4:15 pm – 5:15 pm
Helping Professionals and Self-Care Elizabeth Rohan, PhD, MSW Don Simmons, CHt
10:45 am – 11:00 am Break
5:15 pm – 6:30 pm
Cocktail Reception in Exhibit Hall
Program Track Chair Mandi Pratt-Chapman, MA Director, The GW Cancer Institute at The George Washington University
9:00 am – 9:10 am
Welcome on Behalf of Leadership Council/ Introduce Keynote Session Mandi Pratt-Chapman, MA
Faculty Speakers
9:10 am – 10:10 am
Keynote Session: Patient Navigators: The Key to Achieving Cancer Care Equity Edward Partridge, MD
Edward Partridge, MD UAB Highlands Ashley Varner, MSW, MBA, LCSW-C, OSW-C Anne Arundel Medical Center Helen Meldrum, PhD Associate Professor Natural and Applied Sciences Associate Professor of Psychology Bentley University Adrienne Thomas Program Manager Community Outreach and Patient Navigation at The George Washington University Richard J. LoCicero, MD Longstreet Cancer Center Jean Sellers, RN, MSN Clinical Administrative Director UNC Cancer Network Elizabeth Rohan, PhD, MSW Centers for Disease Control and Prevention Don Simmons, CHt Stress Management & Visionary Counselor
Assessment Ashley Varner, MSW, MBA, LCSW-C, OSW-C
Institute Core Competencies for Patient Navigators Mandi Pratt-Chapman, MA
*Agenda is subject to change.
The special “Patient Navigator Track” for nonclinically licensed oncology navigators – which is the result of a collaboration between AONN+ and the Southeast Regional Patient Navigator (SEPN) leadership collaborative – will be offered on day 3 of the conference (Saturday, October 3).
To register, please visit
https://www.etouches.com/aonnplusatlanta2015 Patient Navigator Track ONLY - Members
Patient Navigator Track ONLY - Nonmembers
$100 – Conference registration $75 – Early bird until 5/31/2015
$115 – Conference registration $90 – Early bird until 5/31/2015 AONN_NavTrack021215
nutrition & cancer
how to
t a E treat
while you
By ASHLEY HARRIS, MS, RD, CSO Outpatient Clinical Dietitian James Cancer Hospital/ The Ohio State University Comprehensive Cancer Center Columbus, OH
MANY PEOPLE DON’T REALIZE THAT PROVIDING THE BODY WITH THE PROTEIN AND CALORIES WE NEED AT REGULAR TIMES THROUGHOUT THE DAY CAN BE AS IMPORTANT AS TAKING MEDICATIONS.
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June 2015 • Conquer-magazine.com
nutrition & cancer
E
ating can be a struggle during cancer treatment. Staying wellnourished and maintaining a healthy body weight can help you with everything from fighting fatigue to recovering faster. Unfortunately, many common treatment side effects make it difficult to get enough nutrients. And because your body is under extra stress, it is even more important to get enough nutrients to support your health. Many people don’t realize that providing the body with the protein and calories we need at regular times throughout the day can be as important as taking medications.
BENEFITS OF PROPER NUTRITION DURING CANCER TREATMENT
HOW MUCH SHOULD I EAT? Your goal should be to have something to eat or have a nutritional drink every 3 hours, for a total of 4 to 6 “mini meals” throughout the day. Keeping your meals small keeps you from getting overwhelmed or feeling too full, especially when you’re feeling tired, or if you don’t have an appetite.
• Increases your energy and endurance • Prevents muscle loss and wasting, and helps you maintain your strength • Builds tolerance to better withstand the effects of treatment and stress, which can mean fewer treatment delays because of weight loss or low nutrient levels
Because everyone’s nutritional needs are unique, the size and frequency of mini meals can vary from person to person. Working with a registered dietitian is a great way to ensure you’re meeting your individual needs.
• Reduces infections and hospital stays • Speeds recovery
TIPS FOR EATING
4 TO 6 MINI MEALS DAILY
} Remind yourself that eating can be as important as taking your medications. You would not skip your medication, so do not skip your meals
} Set an alarm for every 3 hours to remind you when it’s time to eat } Store a variety of grab-and-go foods so you don’t have to do extra work or preparation when it’s time to eat. Some good examples include nuts, fruit, single-serving Greek yogurts, cheese sticks, and canned soups
} Make a snack basket of your favorite foods, and keep it out where you will see it as a reminder to eat
} Keep a snack basket or a cooler next to you if you’re in bed or on the couch so you don’t have to get up when it’s time to eat
} Freeze leftover food in single-sized portions so you simply have to reheat them
} Remember: it’s okay to drink your nutrition! Try a smoothie or an oral nutritional supplement in place of a mini meal if you’re not up to eating 55
June 2015 • Conquer-magazine.com
nutrition & cancer WHAT IF I’M FEELING NAUSEOUS? Even though it may be the last thing you want to do, getting food in your stomach can actually help ease nausea. Staying hydrated also helps keep nausea at bay. Try these tips to help you get your food and fluids: • A im for 6 to 8 very small meals, and at least 64 ounces of fluid every day • Choose bland, easy-to-digest snacks, such as saltines, baked chicken, Cream of Wheat, or chicken noodle soup • A void spicy, fatty, greasy, and strong-smelling foods • C onsume food and drinks that are room temperature or cooler • Some foods that help soothe your stomach include salty snacks, such as saltines, potato chips, pretzels, chicken noodle soup, or broth • Ginger-based drinks or snacks, such as ginger ale, ginger tea, candied ginger, ginger chews, or fresh ginger in recipes • L emon-based drinks or snacks, such as lemon water, lemon candies, or lemon tea
KEEPING YOUR MEALS SMALL KEEPS YOU FROM GETTING OVERWHELMED OR FEELING TOO FULL, ESPECIALLY WHEN YOU’RE FEELING TIRED OR DO NOT HAVE AN APPETITE.
Straw berr y Banana Ginger Smo othie 1 medium
Smoothies a re a great w ay to get nu trition, especially w hen you don’ t have an ap when you’re petite, feeling naus eous, if you have mouth sores, or when thin gs just don’t Try this nutriti taste right. ous smoothie recipe that’ with fruits, pro s filled tein, and sto mach-sooth ing ginger. Mix all ingred ients togethe r with a blend and serve. er
banana 1 c up frozen strawberries ½- inch piec e of fresh ginger, peeled and chopped ½ cup Gree k yogurt
56
June 2015 • Conquer-magazine.com
nutrition & cancer WHAT IF NOTHING TASTES RIGHT? Taste changes can be a major barrier to eating. This is when it’s important to remember that food is as important as medicine, and to view eating not as pleasure but as necessity. It may not taste as good or be as fun to eat, but it must be done. TRY THESE TIPS TO HELP: • Try cool, moist foods, such as frozen melon balls or grapes • Rinse your mouth with a mixture of warm water, salt, and baking soda before eating to help reset your taste buds • Use plastic silverware to avoid metallic taste • Suck on lemon or peppermint candies throughout the day
• S ome people find that red meat tastes bitter; choose other sources of protein, such as chicken, fish, eggs, beans/legumes, nuts, or nut butter I F YOUR FOOD TASTES BLAND: • Choose tart foods, such as lemon wedges, lemonade, citrus fruits, vinegar, or pickled foods • Add extra flavor to foods with spices or sauces, such as onion, garlic, chili powder, basil, oregano, rosemary, mint, ketchup, mustard, or barbeque sauce • Choose fresh vegetables over canned or frozen vegetables • Add a small amount of honey or sugar to bring out flavor
WHAT IF I HAVE MOUTH SORES? Mouth sores are common with chemotherapy and can be a real pain (no pun intended). If you have mouth sores, try these tips: • Avoid dry, course, and rough foods • Avoid alcohol, citrus, spicy foods, and acidic foods, such as tomatoes • Choose soft, bland foods served at room temperature • Try pureed fruits and vegetables, puddings, custards, cream soups, or Crock-Pot meals • Moisten foods with broth, sauces, gravies, or milk • Drink smoothies, milkshakes, or oral nutritional supplements to replace meals or snacks • Suck on frozen fruits or popsicles to soothe your mouth • Rinse your mouth with a mixture of warm water, salt, and baking soda 2 to 3 times every day
REMEMBER: Medications are available, and sometimes necessary, for managing treatment side effects, especially nausea, mouth sores, diarrhea, and constipation. It is always important to speak with your healthcare team about your side effects and take your medications as recommended. 57
June 2015 • Conquer-magazine.com
braincancer What You Need to Know About
BRAINCancer By KRISTEN CHANLEY
Brain cancer is the leading cause of solid tumor cancer death in children and adolescents under age 20, the second leading cause of cancer-related death for men aged 20 to 39, and the fifth leading cause for women aged 20 to 39 years. Brain cancer does not discriminate, and no truly preventive measures exist. In 2015, approximately 23,180 American adults will be diagnosed with brain cancer, and approximately 14,000 deaths will occur from primary malignant brain tumors. There are 120 types of brain tumors that rarely spread outside of the brain and spinal cord. Gliomas (all tumors found in the supportive brain tissue) represent 80% of all malignant brain tumors.
RISK FACTORS There are no known causes for brain tumors. Many risk factors have been studied, but only exposure to radiation (high-dose x-rays) was found to consistently increase the risk for a brain tumor. However, in recent decades, radiation has become more focused on the affected area. In addition, doctors, dentists, and technicians
are now taking more precautions when using radiation so the risk for brain tumors from radiation is currently low. Research attempting to link cell phone use and brain tumors is also common, but multiple studies have shown inconsistent results. Studies comparing risks identified with short-term and long-term cell phone use (10 years or more) have also produced conflicting results. According to the National Cancer Institute and the American Brain Tumor Association, further research is needed to fully understand the impact of cell phone use on brain tumors. 58
June 2015 • Conquer-magazine.com
Genetically, only 5% of benign and malignant brain tumors may be connected to hereditary risk factors. There are only a few, very rare, inherited genetic syndromes that involve brain tumors. The majority of genetic risk factors for brain tumors are accumulated over time, not inherited at
braincancer birth. With increasing age, certain genes may begin to function abnormally, abandoning their normal roles in suppressing tumors, monitoring cell growth, and controlling immune response.
DIAGNOSIS After discussing your family and health history, the doctor will perform a basic neurologic exam that checks your vision, alertness, reflexes, hearing, and coordination. An eye exam is also often used to check for swelling. If the results of the neurologic exam lead the doctor to suspect a brain tumor, a CT scan and/or an MRI will be ordered. These imaging methods use special dye that is injected before the images are taken to make abnormal areas easy to see. In some cases, a spinal tap or a biopsy may also be performed. Researchers are currently studying biomarkers that are indicators of cancer and are found in the blood, urine, and tissue.
TREATMENT The 5-year survival rate after a diagnosis of a malignant brain tumor is approximately 34%. Treatment for malignant brain tumors depends on the tumor’s type and grade, location, and size, as well as the patient’s age and general health. Treatment options typically include surgery, radiation ther-
SYMPTOMS
A brain tumor is often found when it interferes with normal body functions, making its presence impossible to ignore. The most common symptoms of a brain tumor include: • Headaches • Changes in speech, vision, or hearing • Problems with balance
• Nausea • Memory issues • Seizures • Numbness in the arms and legs
The symptoms depend on the type of brain tumor and its location, and are caused when a tumor presses on a nerve or harms the brain itself. apy, and chemotherapy. Most a reengineered polio virus to kill brain tumors are treated with a cancer cells in glioblastoma, the combination of these options. most common and aggressive When possible, surgery is the malignant brain tumor. The trial is first treatment. The goals of surstill in its first phase, and the treatgery are to make an accurate ment has only been used on a diagnosis, and to remove as few patients, but the results have much of the tumor as possible been promising so far. to relieve pressure on the brain Since 2006, the Cancer Geand nerves, while maintaining nome Atlas project has been catbrain function. aloging the genetic changes in Surgery is often followed by more than 20 cancers, with glioradiation therapy, which will blastoma being a top priority. This destroy any remaining cancer information will help to improve the cells. Several types of radiation diagnosis and treatment, and poare used for brain tumors, includtentially prevent, brain cancer. ◆ ing 3-D scans to target the radiation more directly on the tumor. Online Exclusive Content For inoperable tumors that are New Polio Vaccine for Brain Cancer Conquer-magazine.com unlikely to be cured, joining a clinical trial may be a good option. There are more than 12,000 clinical trials in a searchable American Brain Tumor Association database, www.can www.abta.org cer.gov/clinicaltrials/ National Cancer Institute search. www.cancer.gov/cancertopics/ pdq/treatment/adultbrain/Patient
PATIENT RESOURCES
NEW DEVELOPMENTS
Brain cancer appeared in headlines in March, when “60 Minutes” spotlighted a clinical trial using 59
Brain Science Foundation www.brainsciencefoundation.org Brain Tumor Alliance www.braintumoralliance.org Voices Against Brain Cancer www.voicesagainstbraincancer.org
June 2015 • Conquer-magazine.com
melanoma MELANOMA AND SKIN CANCER CAN BE PREVENTED BY COVERING YOURSELF WITH PROTECTIVE CLOTHING, SEEKING SHADE, WEARING SUNSCREEN, AND STAYING OUT OF DIRECT SUNLIGHT DURING THE PEAK HOURS OF 10 am TO 4 pm.
Melanoma:
not just skin cancer
By CATHERINE M. POOLE
S
Melanoma is not just skin cancer, which is the title of my recent book, to emphasize this misconception about melanoma. It is a type of skin cancer, but not the garden variety, such as squamous-cell or basal-cell skin cancers. More often than not, these types of skin cancer are excised, and you no longer need to worry about them. However, if melanoma is not caught early, it can spread and become life-threatening. Fortunately, melanoma grows on the outside of our bodies (with the exception of rare types of mucosal and ocular melanoma),
kin cancer is the most common type of cancer in the United States, with 3.5 million patients diagnosed each year. According to the American Cancer Society, approximately 76,100 patients will be diagnosed with melanoma this year, with about 1,000 more men than women. Close to 10,000 deaths were caused by melanoma in 2014, with twice as many deaths in men than in women. Men tend to have a higher mortality rate, because late detection in men means the melanoma is found at a later growth stage. 60
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melanoma where it can be readily seen by the naked eye. When it is caught early and removed properly with a wide excision, you can probably feel confident that it won’t come back. However, melanoma often misbehaves and can be misread by the pathologist. Therefore, it is wise to have a dermatopathologist do the pathologic analysis, and/or to get a second opinion.
and it may take many years of strategy to raise awareness about the dangers of UV light exposure. Shallow-depth (or in situ) melanoma is unlikely to spread; however, deeper melanomas can spread to vital organs, such as the lungs, liver, or brain, just like any other cancer. Skin exams are important for finding melanoma early, and you can do it just as easily as your doctor. After all, you know your skin better than your doctor who sees many patients daily.
RISK FACTORS What causes melanoma? It is unlikely that melanoma is hereditary; the culprit is likely ultraviolet (UV) radiation from the sun or from tanning lamps/beds. Less than 4% of melanoma is familial, and it is often found in families that have many moles or atypical moles, or a predominance of red hair and fair skin. This appearance can indicate the P16 gene, which is the main gene that has been linked to melanoma. When melanoma is genetic, there are usually 2 or more close blood relatives who have melanoma. The likelihood of it running in families is often attributed to families that spend their summers tanning at the shore, or spend their winters in sunny places. A tan is still a relished skin feature in our society, and remains the main reason behind the increased number of melanoma and skin cancer cases.
TREATMENT OPTIONS Patients who have melanomas that measure 0.76 inches or deeper usually receive a sentinel node biopsy to see if the melanoma has spread to their lymph nodes. If there is 1 or more nodes that test positive for melanoma, the patient is considered to have stage III melanoma. Sadly, we have no great choices for adjuvant therapy yet, and watching and waiting is often the only choice for patients in this situation. If the melanoma progresses to stage IV, then choices emerge for some promising therapies. The treatment of melanoma has taken center stage in cancer research, and it is high time. After 40 years of little or no progress in treatment, we now have therapy choices. We don’t have a cure for spreading melanoma quite yet, but patients are certainly living longer, and with higher-quality lives. If we can figure out how to catch all melanomas early, when they are curable, or prevent them from happening at all, that would be an astounding feat! ◆
PREVENTION Melanoma and skin cancer can be prevented by covering yourself with protective clothing, seeking shade, wearing sunscreen, and staying out of direct sunlight during the peak hours of 10 am to 4 pm. Avoiding tanning salons is imperative, because using tanning beds can increase your risk for melanoma by 75%. Prevention is a tough row to hoe,
PATIENT RESOURCES
See also my melanoma article in the February issue of CONQUER
Patients with Stage IV Melanoma Speak Out www.melanomainternational.org/ events-webinar/patient-experience-video
Melanoma—Not Just Skin Cancer by Catherine M. Poole
Catherine M. Poole President/Founder, Melanoma International Foundation Glenmoore, PA 61
Skin Exam www.melanomainternational.org/ melanoma-facts/examine-your-skin Patient/Caregiver Moderated Forum www.melanomaforum.org
June 2015 • Conquer-magazine.com
financial supportservices Patient Support Services for Blood and Prostate Cancers, Melanoma, and Supportive Care Medications The following programs provide financial assistance directly from the drug manufacturers for patients who need help to pay for their medications for blood cancers (except multiple myeloma, which was featured in the April issue), prostate cancre, melanoma, and supportive care. Contact the relevant program directly to find out what type of assistance is available to you.
ABBVIE INC
AbbVie Patient Assistance Foundation
Phone: (800) 222-6885 www.abbviepaf.org The foundation provides AbbVie med ications at no cost to patients experi encing financial difficulty. • L upaneta Pack (leuprolide acetate and norethindrone acetate) • L upron Depot (leuprolide acetate for depot suspension)
AMGEN INC
Safety Net Foundation
Phone: (888) 762-6436 www.safetynetfoundation.com The Safety Net Foundation is a non profit patient assistance program designed to assist patients who are uninsured, with limited or no financial resources. Program eligibility is based on US residency, insurance status, and income requirements. • Aranesp (darbepoetin alfa) •E pogen (epoetin alfa) •N eulasta (pegfilgrastim) •N eupogen (filgrastim) •N plate (romiplostim) •P rolia (denosumab) • S ensipar (cinacalcet) •V ectibix (panitumumab) •X geva (denosumab)
ARIAD PHARMACEUTICALS, INC ARIAD PASS
ASTELLAS PHARMA US, INC/ MEDIVATION, INC Astellas Access Program
Phone: (855) 982-6341 www.astellasaccess.com This program is designed for patients who have no health insurance. The program provides free Xtandi to pa tients who qualify. •X tandi (enzalutamide)
COVIS PHARMACEUTICALS INC
Covis Patient Assistance Program
Phone: (877) 438-9759 www.covispharma.com The Covis Patient Assistance Program helps US citizens or residents who do not have a healthcare plan or have been denied coverage. •N ilandron (nilutamide)
DARA BIOSCIENCES INC
No Coupon, No Copay, No Hassles Program
Phone: (919) 872-5578 www.onco360.com/Gelclair/Default. aspx www.soltamox.com/co-pay-support This program is intended to reduce or eliminate financial outlays by offset ting patient out-of-pocket copay ex penses, and will be applied automati cally to qualified prescriptions at more than 43,000 pharmacies nationwide. •G elclair (bioadherent oral rinse gel) • S oltamox (tamoxifen citrate)
DENDREON CORPORATION Dendreon ON Call
Phone: (877) 336-3736 www.DendreonONCall.com Dendreon is committed to helping patients who are eligible gain access to patient assistance through Den dreon ON Call. For eligible patients who do not have coverage for Pro venge, Dendreon provides Provenge free of charge. •P rovenge (sipuleucel-T)
EISAI INC
Eisai Reimbursement Resources
Phone: (866) 613-4724 www.eisaireimbursement.com Through Eisai Reimbursement Re sources, patients can find prod uct-specific resources for select drugs and a variety of patient assistance services. •A kynzeo (netupitant/palonosetron) •A loxi (palonosetron hydrochloride injection) •H alaven (eribulin mesylate) •H exalen (altretamine)
GILEAD SCIENCES, INC
Zydelig AccessConnect
Phone: (844) 622-2377 www.zydeligaccessconnect.com The Zydelig AccessConnect program provides Zydelig (idelalisib) at no charge to eligible patients. • Z ydelig (idelalisib)
Zydelig Copay Coupon Program
Phone: (855) 447-7277 www.ariadpass.com ARIAD PASS (Patient Access and Sup port Services) program helps providers and patients afford treatment. • I clusig (ponatinib)
Phone: (844) 622-2377 www.activatethecard.com/zydelig The program provides copay assis tance for eligible patients with private insurance who need assistance pay ing for their out-of-pocket medication costs. Most patients will pay no more than $5 per monthly copay. • Z ydelig (idelalisib)
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financial supportservices GLAXOSMITHKLINE
PFIZER INC
Phone: (866) 265-6491 www.gskcta.com GlaxoSmithKline (GSK)’s patient as sistance program supports access to GSK’s oncology and certain specialty pharmacy drugs at little or no cost to qualified patients. GSK’s Copay As sistance Program is also available for eligible patients. •A rranon (nelarabine) •A rzerra (ofatumumab) •B exxar (tositumomab) •H ycamtin (topotecan) capsules •H ycamtin (topotecan hydrochlo ride) for injection • L eukeran (chlorambucil) •M ekinist (trametinib) •M yleran (busulfan) •P romacta (eltrombopag) • T ykerb (lapatinib) •V otrient (pazopanib)
Phone: (866) 706-2400 www.pfizerrxpathways.com A comprehensive assistance program, Pfizer RxPathways provides eligible pa tients with a range of support services, including copay assistance and access to medicines at no cost or at a savings. •A romasin (exemestane) tablets •B osulif (bosutinib) •C amptosar (irinotecan) •E llence (epirubicin hydrochloride) •E mcyt (estramustine phosphate sodium) • I damycin (idarubicin hydrochloride) • I nlyta (axitinib) •N eumega (oprelvekin) • S utent (sunitinib malate) • T orisel (temsirolimus) •X alkori (crizotinib) • Z inecard (dexrazoxane)
Commitment to Access Program
INCYTE CORPORATION IncyteCARES Patient Assistance Program
Phone: (855) 452-5234 www.jakafi.com/incytecares.com The IncyteCARES Patient Assistance Program helps individuals who do not have a healthcare plan. The program can also help patients whose plans have turned them down for Jakafi (ruxolitinib) treatment. • J akafi (ruxolitinib)
MERCK & CO., INC
ACT and MAP Programs
Phone: (866) 363-6379 www.merck.com/merckhelps The ACT and MAP programs provide free reimbursement support services for questions related to insurance coverage and reimbursement. The ACT Program refers patients to the patient assistance program, which provides certain Merck medicines free to eligible patients. •E mend (aprepitant) •E mend (fosaprepitant dimeglumine) • I ntron A (interferon alfa-2b, recombinant) •K eytruda (pembrolizumab) •N oxafil (posaconazole) • S ylatron (peginterferon alfa-2b)
Merck Patient Assistance Program
Phone: (800) 727-5400 www.merck.com/merckhelps The program is available to eligible patients who may qualify to receive medicine at no cost. • T emodar (temozolomide)
Pfizer RxPathways
PHARMACYCLICS, INC
Imbruvica YOU&i Support Program
Phone: (877) 877-3536 www.youandisupport.com Patients with commercial insurance and who meet certain eligibility re quirements pay no more than $10 monthly for Imbruvica (ibrutinib). • I mbruvica (ibrutinib)
PROMETHEUS THERAPEUTICS & DIAGNOSTICS
Prometheus IV Bolus Proleukin Inpatient Reimbursement Hotline
Phone: (877) 776-5385 www.proleukin.com/health-careprofessional/resources Proleukin (aldesleukin), the Prometheus IV Bolus Proleukin Inpatient Re imbursement Hotline is staffed with specialists who can help resolve spe cific access and reimbursement issues for patients and physicians. •P roleukin (aldesleukin)
PROSTRAKAN USA
Patient Rx Solutions
Phone: (866) 676-5884 www.patientrxsolutions.com Patient Rx Solutions is designed to assist uninsured individuals and those who have no public or private prescription coverage. ProStrakan also offers co pay assistance to eligible individuals. • F areston (toremifene citrate) • S ancuso (granisetron transdermal system)
SEATTLE GENETICS
SeaGen Secure Patient Assistance Program
Phone: (855) 473-2436 www.seagensecure.com SeaGen Secure is a comprehensive assistance program for uninsured and underinsured patients who have been prescribed Adcetris (brentux imab vedotin). •A dcetris (brentuximab vedotin)
SIGMA-TAU PHARMACEUTICALS, INC
SOS Copay Assistance Program
Phone: (855) 497-3366 www.sigmatau.com/support/ support_oncaspar.asp Sigma-Tau Pharmaceuticals is offering the Sigma-Tau Outreach Services Co pay Assistance Program for patients to reduce the out-of-pocket costs of Oncaspar. •O ncaspar (pegaspargase)
SPECTRUM PHARMACEUTICALS, INC STAR
Phone: (888) 537-8277 www.getasapinfo.com Spectrum Pharmaceuticals is com mitted to providing appropriate pa tient access to care. STAR (Spectrum Therapy Access Resources) includes a copay assistance program to pa tients who meet the STAR eligibility criteria to certain Spectrum medi cations. The STAR program includes a patient assistance pro gram that provides Spectrum medications free of charge to patients who meet the eligibility criteria. • F olotyn (pralatrexate injection) • F usilev (levoleucovorin) •M arqibo (vincristine sulfate liposome injection) • Z evalin (ibritumomab tiuxetan)
TEVA PHARMACEUTICALS, INC Teva Cares Foundation
www.tevacares.org The foundation offers some medica tions at no cost to eligible patients. The following are oncology and on cology-supportive drugs covered by the foundation: • Fentora (fentanyl buccal tablet), CII • Granix (tbo-filgrastim) • Synribo (omacetaxine mepesuccinate) • Treanda (bendamustine HCl) • T risenox (arsenic trioxide) TLG425-3
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We Aspire to Cure Cancer
Committed to Improving the Lives of Cancer Patients Everywhere We are excited to announce the launch of TAKEDA ONCOLOGY, formerly known as MILLENNIUM: THE TAKEDA ONCOLOGY COMPANY. Our mission is unchanged as we endeavor to deliver novel medicines to patients with cancer worldwide through our commitment to science, breakthrough innovation and passion for improving the lives of patients. This singular focus drives our aspiration to discover, develop and deliver breakthrough oncology therapies. By concentrating the power of leading scientific minds and the vast resources of a global pharmaceutical company, we are finding innovative ways to improve the treatment of cancer. We’ve built a portfolio of paradigm-changing therapies and a leading oncology pipeline. While we’ve made great strides in our fight against cancer, we are determined to do more—to work harder and to reach higher. We will do this with the same passion, agility and entrepreneurial spirit that has sustained the heart of our culture and has made us the leader in oncology that we are today. We know that our mission is not a quick or easy one but we are up to the task: we aspire to cure cancer.
To learn more, visit us at takedaoncology.com. Takeda Oncology is a registered trademarks of Takeda Pharmaceutical Company Limited. Copyright ©2014, Millennium Pharmaceuticals, Inc.