Cancer Transitions IO Participant Workbook by CancerSupportCommunity2021

CANCER TRANSITIONS Immunotherapy Oncology Participant Workbook GILDA’S CLUB

CANCERTRANSITIONS MOVING BEYOND TREATMENT

Patients who participate in their fight for recovery

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along with their health care team will improve the quality of their lives and may enhance the possibility of recovery.”

- Dr. Harold Benjamin

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Patients who participate in their fight for recovery along with their health care team will improve the quality of their lives and may enhance the possibility of recovery. —Dr. Harold Benjamin, Founder of The Wellness Community

CANCER TRANSITIONS FACILITATOR GUIDE

TABLE OF CONTENTS PREFACE INTRODUCTION

TABLE OF CONTENTS

Session One Get Back to Wellness: Take Control of Your Survivorship Cancer Transitions: Moving Beyond Treatment The Approach

Session Two Emotions and Health Introduction

Who is a “Cancer Survivor”?

Emotions and Health: Distress and Cancer

Let’s Talk About Survivorship

Coping with Emotions

Developing Your Action Plan

Talking About Feelings

Using the “Buddy System”

When and Where to Get Help

Fitness Trackers and Pedometers

Dealing with Cancer…. Again

Introduction for patients that have received immunotherapy treatment. Weekly Wellness Assignments

Making the Mind-Body Connection I am Not in Treatment: What Now? Relationships with Family, Friends, and CoWorkers Emotional Closeness and Intimacy Sexual Health and Intimacy Key to Improving Relationships: Communicate Fertility and Infertility Practical Matters: Employment, Health Insurance, and Medical Costs Finding Meaning in Your Cancer Experience Weekly Wellness Assignments

CANCERTRANSITIONS: Immunotherapy Workbook

Session Three Eating Well & Staying Active Eating Well Nutrition Beyond Cancer The Value of a Healthy Weight Crafting a Diet that is Right for You Eating Right: Guidelines for Good Health Nutrient-Rich Foods Dietary Supplements Tips for Changing Your Diet Overcoming Challenges to Healthy Eating The Value of a Support System Getting Started – Food in Review Weekly Wellness Assignments

Staying Active Find Your Motivation How Exercise May Help with Cancer Talking to Your Doctor How to Customize Physical Activity How to Maintain a Physical Activity or Exercise Plan

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Session Four Medical Management Beyond Cancer: What You Need to Know Introduction Cancer Survivors and Health Communicating with Your Health Care Team Health Insurance The Purpose of Follow-Up Care Make a Plan for Follow-Up Care Organizing Your Medical Records Short- and Long-Term Health Risks After Cancer Treatment Late Effects: Long-Term Health Concerns of Survivors Taking Care of Yourself Looking Forward Weekly Wellness Assignments

Build-in Rest and Relaxation Weekly Wellness Assignments

CANCERTRANSITIONS: Moving Beyond Treatment

PREFACE

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Cancer Support Community: Our Survivorship Story Patients who participate in their fight for recovery along with their health care team will improve the quality of

their lives and may enhance the possibility of recovery.”

- Dr. Harold Benjamin

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Congratulations on your decision to participate in Cancer Transitions: Moving Beyond Treatment! In the coming weeks, you will learn small steps that you can take towards a more fulfilling life as a cancer survivor. That is the central purpose of this program and the mission of the Cancer Support Community. The Cancer Support Community (CSC) was created through the joining together of two pioneering organizations: The Wellness Community and Gilda’s Club. Inspired by his wife’s experience, Dr. Harold Benjamin created the Wellness Community in 1972. He dedicated 30 years of his life to supporting people with cancer by encouraging them to play an active role in managing their disease. Actress and Saturday Night Live comedian Gilda Radner was one of many people to find friendship, hope, and a renewed sense of control through the Wellness Community. Gilda’s Club New York City was founded in memory of Radner, who said that having cancer

CANCERTRANSITIONS: Immunotherapy Workbook

gave her membership in an elite club she rather not belong to. With financial and emotional support from actor Gene Wilder, Gilda’s husband, psychotherapist Joanna Bull, actor Mandy Patinkin, critic Joel Siegel, and other friends and generous individuals, Gilda’s Club NYC opened its iconic red door in 1995, providing a place where cancer patients and their families could find support, resources, and a community that cares. The Wellness Community and Gilda’s Club were groundbreaking organizations for their time. Their 2009 merger came at a time of financial uncertainty for nonprofit organizations. The leadership of the Wellness Community and Gilda’s Club understood the value of their work to the communities they served. The two organizations, with their shared vision and legacy, chose to come together as the optimal way to sustain their work and grow into one international community. Their union created the Cancer Support Community – a community for and about cancer survivors.

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OUR MISSION As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community is dedicated to ensuring that all people impacted by cancer are empowered with knowledge, strengthened by action, and sustained through community.

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Our Global Network in Action We are a global non-profit network of 175 locations: CSC and Gilda’s Club centers, hospital and clinic partners, and satellite locations that deliver more than $50 million in free support and navigation services to patients and families. In addition, we administer a toll-free helpline and produce award-winning educational and digital resources that, together with the locations, reach more than one million people each year. We also conduct cutting-edge research on the emotional, psychological, and financial journey of cancer patients and advocate at all levels of government for policies to help individuals whose lives have been disrupted by cancer.

CANCERTRANSITIONS: Immunotherapy Workbook

INTRO Introduction to Immunotherapy The medical and scientific community has been fighting cancer using surgery and chemotherapy since the early 1900s. One of the newer forms of treatment that has evolved since the 1980s is immunotherapy. Immunotherapy is a form of medical treatment that uses the body’s immune system to fight cancer. Because immunotherapy engages the body’s immune system to fight cancer, management of side effects can be challenging. Patients and health care team members share the responsibility of promptly reporting treatment-related symptoms that arise from immunotherapy treatments. However, patients often require additional education, support, and resources to become active partners in their care during and after immunotherapy treatment. This workbook is crafted to help you understand the unique challenges facing patients undergoing immunotherapy.

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Today, there are multiple kinds of immunotherapy treatments. These novel treatments help fight cancer by: • Boosting the immune system. A “revved up” immune system may be better than traditional cancer drugs in fighting cancer. • “Marking” cancer cells so that your immune system can detect them more easily and destroy them. Tagging the cancer cells with limits their ability to hide from the immune system.

CANCERTRANSITIONS: Moving Beyond Treatment

• Helping the immune system find cancer cells and deliver targeted treatment (like chemotherapy, radiation, or even T cells) directly and only to the cancer cells. TOP CONCERNS AMONG IMMUNOTHERAPY PATIENTS 35%

Food too tired

34%

Exercise or physical activity Pain and/or physical discomfort

31%

Health insurance/ money worries

30%

Worrying about loved ones

30%

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Changes or disruption in life

29%

Worrying about the future

28%

Sleep problems

25% 0%

10%

20%

30%

40%

Percentage of people who responded “ Moderately to ” Extremely“ concerned Percentage of people who were “ Moderately to ” Extremely“ concerned and also indicated they would like the CSC to provide them with the help about their concern

PERCENT OF RESPONDENTS AT RISK FOR CLINICALLY SIGNIFICANT DEPRESSION OR ANXIETY 25%

21% 18%

20% 15% 10% 5% 0%

Depression

CANCERTRANSITIONS: Immunotherapy Workbook

Anxiety

Immunotherapy has yielded impressive results for some types of cancer. Even so, graduates of immunotherapy need the same type of support and education as patients who have finished more traditional cancer treatments. The experience of millions of cancer patients has proven that an active and positive approach to survivorship can strengthen your body and mind. The Cancer Transitions program addresses many of the physical, social, and practical issues you and your loved ones may face as you move into a new stage of living with cancer. This program is designed to help you improve your quality of life by focusing on lifestyle skills and habits related to:

• Eating and nutrition • Emotional well-being • Financial wellness • Medical care • Physical activity

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• Relationships,

• Worry less about cancer • Feel stronger and healthier • Have more energy for people or activities • Take better care of your body and mind

CANCERTRANSITIONS: Moving Beyond Treatment

Get Back to Wellness: Take Control of Your Survivorship

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Session

Introduction Cancer Transitions: Moving Beyond Treatment The Approach

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Who is a “Cancer Survivor”? Let’s Talk About Survivorship Developing Your Action Plan

SESSION

ONE

CONTENTS

Using the “Buddy System” Fitness Trackers and Pedometers Introduction to Immunotherapy Weekly Wellness Assignments CANCERTRANSITIONS: Moving Beyond Treatment

“This program was very helpful to me at this stage of recuperation—I’m not sure I could have done it in the beginning. The information is so valuable!” Cancer Transitions Participant

Introduction Welcome to the first session of the Cancer Transitions program! You are here because you are a survivor. More than that, you are a survivor who has decided not to let cancer control your life. In making the decision to participate in the Cancer Transitions program, you have taken an important first step.

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Where You’ve Been Even if you do not always feel strong, you have proven that you are resilient, which means you have the ability to recover. The past few months or years have shown that. A cancer diagnosis is lifechanging. It can bring up many emotions. People often describe feelings of fear, anger, sadness, or even relief at finally knowing what is wrong. For many people, the uncertainty and anxiety that comes with the diagnosis wanes decrease during treatment. They reach a calm plateau stage. They feel supported by a health care team and maintain focus on getting through treatment. It is normal to look forward to the end of a round of treatment or the final treatment. It can feel like an important milestone.

CANCERTRANSITIONS: Immunotherapy Workbook

INTRO Yet, when that day arrives, it can bring unexpected questions and emotions. It can also bring more uncertainty. When cancer survivors are done with treatment, they may miss seeing their health care team. The members of their health care team (nurses, administrative personnel, physicians, technicians, etc.) have provided education, encouragement, hope and have served as a trusted support group to both the patient, family, and other caregivers. Like many people with cancer, you probably want to return to living life to the fullest. Yet, you may not be sure what a “regular or normal life” means or how to do it.

Where You are Going The Cancer Transitions program is designed to help you move into the next phase of life with skills and strategies that will empower you to live fully. The program is tailored to your needs. Just as there is no one typical response to cancer or cancer treatment, there is no one typical way of living as a cancer survivor.

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This is the first of four sessions aimed at educating and supporting people who have been treated for cancer. You are powerful, and this program will teach you how to harness that power. You will start to think about your goals. Then, together, we will focus on making a plan – a plan for how to work towards those goals. This program will help you learn skills to more easily, comfortably, and pro-actively transition back to everyday life. Cancer Support Community. Patient Insights: The 2020 Cancer Experience Registry Report. https:// www.cancersupportcommunity.org/sites/default/files/file/2020-07/CSC_Registry_Report_June_2020. pdf National Coalition for Cancer Survivorship. NCCS Cancer Survivorship Survey: Patients Share Their Top Concerns. September 15, 2019. https://canceradvocacy.org/nccs-survivorship-survey-cancer-survivors-share-top-concerns/ CANCERTRANSITIONS: Moving Beyond Treatment

Cancer Transitions: Moving Beyond Treatment Cancer Transitions: Moving Beyond Treatment was created by the Cancer Support Community. Our goal is to support, educate, and empower as you transition into the next phase of life. This is especially important, because people are living longer and stronger lives nowadays beyond cancer, thanks to treatments such as immunotherapy. Some people in this program have completed treatment. For others, cancer treatment is ongoing. Both groups can benefit from this program.

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The activities in this book are designed for everyone. We will meet you where you are and help you move forward. The lessons and resources can help you: • address the short- and long-term effects of cancer treatment • enhance your physical health • improve your emotional well-being You will learn how to be more physically active, eat healthier foods, feel better emotionally, communicate more openly, take the next steps toward financial recovery, and play a more active role in managing your overall health. If you have completed your treatment, it will be important to understand your “surveillance plan” as outlined by your doctor. A surveillance plan includes ongoing monitoring for signs of cancer through tests and/or procedures. You may also hear the term follow-up care plan.

CANCERTRANSITIONS: Immunotherapy Workbook

THE PROGRAM

More About the Program

This program was born out of need. Over the years, we have heard from thousands of cancer survivors. The message is clear. Cancer survivors have expressed the need for more encouragement, support and information about nutrition, exercise, emotional health, financial health, and medical management. A national survey of people with cancer indicated patient need more support in all of these areas (Cancer Experience Registry 2020) People with cancer also reported that their health care teams do not help as much as they would like with some of these concerns. Cancer Transitions is designed to fill this gap. Participants in the Cancer Transitions program meet once each week for four (4) consecutive weeks. The program will include expert presentations, group discussion, and an emphasis on setting and achieving goals. We hope that each person has a unique and enriching experience. One of the most important aspects of this program is the fact that everyone learns from one another. The meeting presents special opportunities to connect with other people who have similar experiences. You can talk about issues and concerns. You will realize that you are not alone.

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At the end of four weeks, we hope you will feel a renewed sense of energy and the ability to cope with life after treatment.

CANCERTRANSITIONS: Moving Beyond Treatment

Each of the four sessions focuses on one survivorship skill set: Session 1: Get Back to Wellness: Taking Control of Your Survivorship Session 2: Emotional Health: Addressing the Barriers to a Positive Life

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Session 3: Eating Well and Staying Active

Session 4: Managing Your Medical Story Beyond Cancer: What You Need to Know

The Cancer Transitions program also features: • Videos on nutrition, exercise, sexual health, and cognitive changes • Training in relaxation and stress management • Group discussion and support • Resources for additional information

Program Materials At every session, we will use this workbook—Cancer Transitions: Moving Beyond Treatment. The workbook is yours to keep. You can write in it, highlight ideas that are meaningful and applicable to your circumstances, and share information with your family. The Notes pages are available at the end of each of the four sections. Throughout

CANCERTRANSITIONS: Immunotherapy Workbook

the program you may receive other publications, handouts, and worksheets to help you plan and organize for the future. You will have Weekly Wellness Assignments. These homework assignments are activities to do between sessions. They will build upon the lessons, reinforce key ideas, and encourage you to think more about what was discussed in the meetings. You will be invited to share your weekly wellness assignments during meeting discussions. You don’t have to share, but past participants have found that sharing can spark ideas and lead to solutions for your concerns. We encourage Cancer Transitions participants to join MyLifeLine. org, CSC’s online community. This site allows you to build your own personalized web page, which you can use to track your progress and share news with friends and family. The MyLifeline web page also includes discussion boards. These boards provide a space where you can connect with other survivors, talk about concerns, and celebrate successes together.

What to Bring Each Week The most important thing to bring to each Cancer Transitions meeting is yourself! You made a big first step when you signed up for this program. The next step might be a little easier or a little harder but, either way, you are not alone.

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The Cancer Transitions program has only four sessions. Each meeting covers a different aspect of survivorship. We share new information and help group members set new goals each week. Even if the week has not gone as you hoped, please try to attend every session. In this program, we focus on the positive, yet we need to listen to your survivorship concerns to help identify solutions. Everyone is here to help each other.

CANCERTRANSITIONS: Moving Beyond Treatment

At every session, please bring: • Your Cancer Transitions: Moving Beyond Treatment workbook • Your Weekly Wellness Assignments (for example your action plan, exercise log, and/or food diary) • Comfortable clothes for the weekly group exercise program

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• Any questions or comments

The Approach The aim of the Cancer Transitions program is to help survivors feel empowered and to equip them to act on those feelings. The program will teach you how to find strength and move forward. Your diagnosis is behind you, so now is the time to take a look at your life, think about where you want to be, set goals, and maybe even be bold with your future. If this sounds daunting, not to worry. We focus on building the game-plan for your future very slowly. You will make a series of small, incremental choices. We will show you specific steps you can take – steps to gain information, seek support, and learn how to improve your quality of life. All these things can help you feel more empowered and give you a renewed sense of control over your life. We hope you will walk away more confident and better able to improve your life after treatment.

CANCERTRANSITIONS: Immunotherapy Workbook

Hope and Resilience We will also focus on hope. Hope is an important part of the cancer experience. Hope begins at diagnosis and continues beyond. As you seek after a better life after treatment, you may hope for many things. Perhaps you hope for better physical or emotional health, for peace in your relationships, for good communication with your doctor, for a way to come to terms with cancer and its place in your life. By completing this program, you are expressing hope for your future. As you take steps to stay active, eat well, and care for your emotional and physical health, your hopes will feel more within reach. You will start to see that you can improve the quality of your life after treatment.

Workbook Exercise What are three hopes you have for the future? Include at least one short-term hope and one long-term hope. Short-term and long-term can mean different things to different people. What’s important is to include at least one hope that feels possible in the near future (within a few weeks or months) and at least one that might take more time to reach.

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CANCERTRANSITIONS: Moving Beyond Treatment

My Hope

I hope to achieve this by [insert time frame – e.g., 2 weeks, 3 months, 1 year, or other time that feels right to you]

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SURVIVOR SHIP

Who is a “Cancer Survivor”?

A cancer survivor is someone who is living with, through, and beyond a cancer diagnosis. From the day you learn you have cancer until the end of your life, you are a cancer survivor. A cancer survivor is also someone who has been affected by cancer, a friend, family member, or caregiver of someone with cancer.

The term “cancer survivor” was coined in 1985 by Dr. Fitzhugh Mullan, a doctor who had cancer. In an essay in the New England Journal of Medicine, he wrote about his life in terms of “seasons of survival.” He described four stages: • Acute survivorship – the time during diagnosis and treatment • Transitional survivorship – a time when treatment is ending, resulting in feelings of celebration, worry, and loss of the support of a health care team

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• Extended survivorship – a period of remission or period when cancer is being treated as more of a chronic disease • Permanent survivorship – a phase where the patient could be considered cancer-free or in an extended period of remission, but often still coping with the physical, emotional, or financial long-term effects of cancer

CANCERTRANSITIONS: Moving Beyond Treatment

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The Cancer Transitions program is designed for people in the transitional, extended, or permanent stages of survivorship. Many survivors join the program after completing a period of active treatment. Active treatment describes a time when life revolves around cancer treatment. It may have involved surgeries, chemotherapy, radiation, or other treatments that required regular hospital or clinic visits. For perspective, taking a daily

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Self-Reflection/Example Questions to Ask Yourself:

What worries me most about my cancer?

What worries do I have about my family and friends?

CANCERTRANSITIONS: Immunotherapy Workbook

What information do I need from my healthcare providers?

What are my life goals?

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pill for cancer (e.g., some hormone therapies) to keep cancer from growing is generally not considered active treatment.

For some people in this program, survivorship is the end of treatment. Other patients may simply be on a break from treatment. Still, others may continue to take medicine, treating cancer as a chronic disease. All are survivors and all are welcome here.

You may not relate to the term “cancer survivor.” That is okay. There is no one right word to talk about life with or after cancer. We encourage you to describe your experience in ways that feel right to you. For many, the word “survivor” describes those who take an active and positive role in their own care. The number of cancer survivors is growing thanks to advances in diagnosis and treatment. There are now more than 16.9 million cancer survivors living in the United States. That’s more than double the population of New York City! The National Cancer Institute estimates by 2030 there will be 22.2 million cancer survivors.

Let’s Talk About Survivorship

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Many people touched by cancer find it difficult to talk about various parts of the experience. They avoid talking with family, friends, or their medical team. Instead of avoidance, try practicing open communication. We encourage you to: • Ask questions about your health care even when you are afraid to hear the answers. • Reach out for help when you need someone to

CANCERTRANSITIONS: Moving Beyond Treatment

listen to you or to help with something practical like driving you to the doctor’s office. It may not be easy to depend on others or share your feelings. Or you may worry that you are a burden to others. Remember, there is a difference between feeling like you are a burden and being a burden. Many people appreciate the chance to listen, provide support, and help people they care about.

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Opening up may help you gain control. Learning how to communicate openly, ask difficult questions, find people who can listen, and ask for help when needed. All of these actions are important life skills. In the next session, we will talk about how to develop these skills.

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• Share your questions and concerns in this group.

“Survivorship requires many things—physical activity and nutrition, a healthy emotional life, and success with managing medical issues after treatment.”

–Cancer Transitions

CANCERTRANSITIONS: Immunotherapy Workbook

Workbook Exercise

Opening up may help you gain control. Learning how to

Try this answering these questions:

communicate openly, ask difficult questions,

1. Is it hard to talk to people? Why? Share about a time when you asked for what you needed and got it?

find people who can listen, and ask for help when needed—are all important life skills.

2. What are some things you need that you could ask for now?

In the next session, we will talk about how to develop these skills.

3. List three people you might be able to talk to about your needs, or people who might be able to help you.

1 2 3 CANCERTRANSITIONS: General Participant Workbook

Session 1: Get Back to Wellness: Take Control of Your Survivorship • Introduction • Cancer Transitions: Moving Beyond Treatment • The Approach • Who is a “Cancer Survivor”?

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• Let’s Talk About Survivorship

In cancer, survivorship focuses on the health and well-being of a person with cancer, from the time of diagnosis until the end of life. This focus is holistic. It includes the physical, mental, emotional, social, and financial effects of cancer that begin at diagnosis and continue through treatment and beyond. Survivorship for patients that received immunotherapy may look a bit different due to different late and long-term effects. Certain types of immunotherapy attack cancer directly or slow its spread to other parts of the body. Other forms of immunotherapy make it easier for other therapies, such as chemotherapy, the kill the cancer cells. However, immunotherapy sometimes results in the immune system attacking healthy cells, which can cause side effects. Side effects of immunotherapy can be mild, moderate, or even life-threatening. Depending on how severe your side effects are, your doctor may pause the treatment or prescribe a type of medication called a corticosteroid. If side effects worsen or do not improve, your doctor may stop immunotherapy. (Source: https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/side-effects-immunotherapy.) (Source: National Cancer Institute https://www.cancer.gov/publications/dictionaries/cancer-terms/def/ survivorship). 28

CANCERTRANSITIONS: Immunotherapy Workbook

Here are some questions you can discuss with your healthcare team: 1. What type of immunotherapy do you recommend? Why? 2. What are the goals of this treatment? 3. Will immunotherapy be my only treatment? If not, what other treatments will I need? 4. How will I receive immunotherapy treatment and how often? 5. What are the possible short-term and long-term side effects of immunotherapy?

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6. What side effects I know about right away?

7. How will this treatment affect my daily life? Will I be able to work, exercise, and do my usual activities? 8. What immunotherapy clinical trials are open to me? 9. Whom should I call with questions or problems?

CANCERTRANSITIONS: Moving Beyond Treatment

Moving Forward Regardless of whether you have completed treatment or not, many cancer survivors say they feel better about their circumstances when they move beyond the initial stress of the diagnosis and begin to take proactive steps to manage their own lives again. The “Eleven Actions” below are things survivors can strive to achieve. These actions can set the stage for moving forward with life.. Eleven Actions Survivors Can Take to Move Forward: 1. Stay in the moment. Try to focus on resolving only today’s problems. Take a deep breath and take one step at a time. 2. Help others understand what you need. Let friends and family know what would help you. People may want to help but are unsure of what you want. Make specific suggestions, like: “Let’s go to a movie,” or “I need you to hold me and just listen while I talk,” or “I could really use some help with the kids tomorrow when I have my appointment with the doctor.” 3. Acknowledge your feelings. Cancer can trigger many strong emotions. Take time just to listen to your body and to the messages you are saying to yourself in your mind. Once you are more aware of your feelings, you can find constructive ways to express them. You may find it easier to talk, write, move your body, or make art or music. Even if you are a private person, you may find that opening up to someone you trust can help. 4. Do what you enjoy. If you are able, keep doing the activities you have always enjoyed. If needed, try to adapt them to match where you are today physically or mentally This is also a good time to explore new ways to enjoy yourself. Ask friends to join you or give yourself permission to be alone when you need to be.

CANCERTRANSITIONS: Immunotherapy Workbook

5. Seek relaxation. “Relaxation” refers to a calm, controlled physical state that will enhance your well-being. The more you practice relaxation, the easier it becomes to achieve. Each of us can find ways to take relaxing breaks in our daily routine. Listen to some music that moves your spirit. Do a few stretches. Take time to enjoy some scenery. Consider joining a relaxation or meditation program in your community. Even watching your favorite TV show can put you in a relaxed state. 6. Focus on the things you can control. If you feel that you lost some measure of control over your life due to the loss of your health care team or others in your life, take a step back. There are always places and practices that can help you regain a sense of control. Think about your life and the areas in which you would like to feel more in control. Consider what changes you can make to regain some control. Sometimes, even simple changes can help enhance your sense of control. 7. Maintain a partnership with your health care team. Aim for ongoing open communication with your health care team. Never stop asking questions through the period of follow-up care and into the future. 8. Take care of your body. Adopt a healthy diet and exercise regularly. These are important aspects of survivorship that have been shown to improve quality of life. 9. Spend time with other cancer survivors. People with cancer often find a sense of comfort in communicating with others who have shared their experiences. Connect with other survivors in person, online, or by phone. Cancer support organizations, such as the Cancer Support Community, can help you connect with other cancer survivors.

CANCERTRANSITIONS: Moving Beyond Treatment

11. Create your personal and treatment goals. Goals help keep our focus, especially during trying times, such as going through immunotherapy treatment. Create your personal and treatment goals and keep them with you. Share your goals with your family, friends, and healthcare providers.

CANCERTRANSITIONS: Immunotherapy Workbook

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10. Maintain Hope. Hope is desirable and reasonable. There are millions of people in the world today for whom cancer is just a memory. Even if your cancer recovery is complicated, you can find small pleasures in your life. Listen to live music. Spend time in nature. Make a special effort to attend a family event, like a birthday or anniversary of someone you love. Look forward to your hair growing back. People who find something that gives them hope are often better equipped to handle whatever challenges lie ahead. Talk about what gives you hope and what you hope for, now and in the future.

Workbook Exercise 1. What do you hope to achieve by participating in this program and talking about survivorship?

2. List 2-3 goals you can start to work towards. Come up with simple goals that you can achieve.

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DOTPATTERN Developing an Action Plan Given the wide array of side effects that immunotherapy may cause, creating an immunotherapy action plan will be a very smart decision. Part of your action plan should focus on improving your physical, mental and emotional well-being. Cancer treatment can be very hard on your body and your spirit. As we move forward, we will focus on actions you can take to improve your physical and emotional health. We will focus on eating well, being active, and taking care of your emotional needs.. These are all actions that can help you heal from the harm cancer and treatment may have caused. Your action plan will target key lifestyle issues. We can help you set reasonable goals and track the changes you want to make. This plan will be designed to help you maintain a healthy lifestyle now, and into the future.

CANCERTRANSITIONS: Immunotherapy Workbook

ACTION PLAN

Each survivor is different, so each action plan will be different. However, all plans will include activities that support a healthy lifestyle. A good plan may improve your quality of life, lower your risk for other illnesses (such as heart disease, diabetes, or a cancer recurrence), and decrease feelings of distress, depression, or anxiety. Your action plan may consist of several components. We’ve provided the tools/worksheets listed here to help you create your plan. These are optional tools, but we hope you will consider using them. Action plan tools include*:

• Complete an Action Plan for Cancer Transitions— This log may be used to help you set weekly goals for improving your physical, nutritional, and mental health during the course of the program. First, start with simple steps, and work towards larger goals over time. This tool is here to remind you of what you hope to do to achieve a healthier lifestyle. It is for personal use only and is not collected.

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• Develop a customized Exercise Log—This log helps you set weekly activity goals and record daily results. • Create a Food Diary—Use this to keep track of daily food choices and habits. By doing so, you will be able to identify changes you can make in your diet. Set weekly goals for improvement.

CANCERTRANSITIONS: Moving Beyond Treatment

After carefully tracking food choices in the first week, you can use the diary to only focus on goals. This diary is for personal use only and is not collected. At the end of this chapter, you will see a sample of the Action Plan, Exercise Log, and Food Diary, with examples of how they can be used. Throughout the Cancer Transitions program, you will be asked to work on these documents. The facilitator will assist you. There will be opportunities to share your experiences and successes, or voice concerns, during each session.

Survivorship Plans It can be helpful to create a survivorship care plan. In Session 4, we will discuss survivorship care plans in more detail and tell you how to get started. A care plan is medically focused. In this program, we also encourage you to look at your whole life, not just your medical care. Even if you do not put it in writing, you may start to create a life plan. You may think about what’s important to you and where you want to focus your time and attention.

Using the “Buddy System” For some people, it is easier to get motivated and accomplish goals when you have a partner, If you are going to use the buddy system, ask yourself what activities you want a partner for and which activities you want to do alone. For example, you might decide to tackle your exercise goals with a neighborhood friend. You may find it easier to go food shopping with someone in this program so you

CANCERTRANSITIONS: Immunotherapy Workbook

can remind each other of the best food choices to make. On the other hand, you might prefer to do these and other activities by yourself. It’s up to you and what you feel most comfortable doing. Either way, “buddies” might be available and can be used for the support!

Fitness Tracker and Pedometers As you focus on physical activity, we encourage you to track your progress. Set realistic goals and strive to meet them. The key word is realistic. Set goals you can meet. When you do so, you can take pride in your success, and it can motivate you to do more. There are many ways to track progress. You may already know that a walk around your block is a quarter mile. This is a great start and might be enough for you. If you are looking for a little more exercise, try using a fitness app or a pedometer. Being able to track your steps can be very motivating. Fitness apps and pedometers make it easy to set goals and know when you meet them.

Remember you also have support from your cancer program, such as navigators, social workers, financial counselors, etc. They can provide reputable educational materials and tools. You can also utilize the support services through Cancer Support Community, add link or phone #

Apps often have built-in cheers and words of encouragement, which you may find fun or helpful. The goal for a fitness program to find a system that is easy to use and works for you. It might even be fun!

CANCERTRANSITIONS: Moving Beyond Treatment

Sample Action Plan for Cancer Transitions The “action plan” chart will help you set goals for each week of this program. Think about your weekly goals. Write notes in the blank action plan chart provided by your facilitator. After this program ends, you can continue to use this tool if it is helpful. Keep setting and reaching personal goals for your health and well-being. This sample may give you ideas for your own goals/notes. *Make sure your doctor signs off on your physical activity goals.

s M

Specific

Make goals specific and narrow for effective planning

This is the only thing I don’t haveDefine what evidence will prove

Measurable

Achievable

Relevant

Time-Bound

CANCERTRANSITIONS: Immunotherapy Workbook

you’re making progress and reevaluate when necessary

Make sure you can resonably accomplish your goal within a certain timeframe.

Your goals should align with your values and long-term objectives.

Set realistic end-date for task priortization and motivation.

Sample Action Plan Goal 2*

Goal 1*

(optional)

Sample Week 1

Eating

Eat two servings of raw vegetables this week.

Physical Activity*

Take two walks this week.

Medical Management

Make a list of questions to ask my doctor.

Journal Highlight

Try one new recipe.

I made a new friend in the program this week!

Goal 1*

Goal 2* (optional)

Sample Week 2

Eating

Eat three servings of raw vegetables this week.

Physical Activity*

Take three walks this week.

Medical Management

Ask my doctor about my headaches.

Journal Highlight

Eat at least ½ cup of whole grains every day.

I talked to my husband about helping me meet my physical activity goals.

Sample Exercise Log for Cancer Transitions Goal for the week: Increase my exercise by 5 minutes each day. Remember to talk with your doctor about your exercise goals before starting a new routine.

Date 2/16

Type of Exercise/ Activity

Length of Time

Walking

10 minutes

Walking

13 minutes

2/19

Stretching and aerobic exercise

15 min

2/20

Walking

18 min

2/21

Yard Work

25 min

2/22

Walking

25 min

Walking

How did you feel before and after your exercise? Did you face any challenges?

1/4 mile or 500 steps

Was worried I’d be too tired, but felt good about my accomplishment

750 steps

I was a little sore from the day before but moved at a slow and steady pace

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2/17

2/23

Distance walked/ steps

28 min

Was afraid I’d move the wrong way, but was careful to not go overboard—invigorating

1400 steps

A little tired, had to rest once, but felt good!

I felt like my arms got a good workout, but my back is sore; treated myself to a bath

1800 steps

Feeling more relaxed as I move

2300 steps

Feeling better each day; my energy is getting better

*Rate of Perceived Exertion (RPE) allows you to rate how much energy a physical activity used. It uses a scale of 1-10 with 10 being the most tiring.

Sample Food Diary Directions: Before you eat anything, record the type of food and amount below. Include the time and how you feel.

Foods Eaten:

Serving Size

Emotions/ Time

Calories

Fat (g)

Sluggish/ 11 a.m.

Daily Total: 2057

24g

Breakfast

130

.3g

Cup of coffee with whole milk & sugar Multi vitamin Apple/cinn. Oatmeal w/raisins

Tired/7 p.m.

180

.5g

Lunch

450 150 67

600 20 100 30

3.5g

Goal for the day: To eat more raw vegetables

Chicken sandwich w/cheese, mustard Bag of potato chips, coke

Dinner 6 oz. salmon, breadedand baked; broccoli; a slice of French bread, 4 oz. white wine

1 1 1

Good/ 12:30 p.m. Cranky /4 p.m.

Water (oz.)

8 oz.

Snacks

10**

Baby carrots, Cheese crackers

320

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Date:

16 oz.

CANCERTRANSITIONS: Moving Beyond Treatment

Instructions: 1. Start with your goal for the day, such as eating more whole grains? Less fat? More water? Use this space later for your daily totals. 2. Record all foods eaten during one weekend day and two or three weekdays. Consider your commitment to eating healthy. Recording food choices could help you avoid overeating in “high risk” situations, since you will become more aware of your habits.

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3. Include all snacks, drinks, vitamin supplements and medications, and extras like gravy, salad dressings, pickles, jelly, butter, margarine, ketchup, sauces, etc. Fruits & Vegetables • Indicate whether fresh, frozen, dried, or canned • Indicate processing: in syrup, water, sauce, butter, or gravy Cereals & Breads, Grains • Dry cereals—level portions of cups or tablespoons • If milk, sugar, fruit, syrup, etc. is added, record the amount • Indicate the type of bread: whole wheat, white, rye, multi-grain, etc. • Indicate the type of grain: oats, rice, barley, quinoa, etc.

CANCERTRANSITIONS: Immunotherapy Workbook

Meats/Fish/Poultry • Record measurement after cooking, or weight from package • Indicate how the meat was prepared and approximate fat content, if known Desserts and Sweets • Measure and record portion size or number of each • Include brand name or indicate if treat was homemade Personalized Nutrition, Inc.

Resources: Frankly Speaking About Cancer® is the Cancer Support Community’s landmark cancer education series that provides trusted information on a variety of topics important to people affected by cancer.

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• Eating Well During Cancer Treatment • Eating Well for Cancer Survivors

• Eating Well with Head and Neck Cancers • Living Healthy with Cancer • National Health, Lung and Blood Institute – Eat Right

CANCERTRANSITIONS: Moving Beyond Treatment

Take time over the week to think about

Weekly Wellness Assignments:

some of the things discussed during this session. Review

1. What are your overall goals for this program? What do you hope to achieve?

some of these topics to complete your action plan goals.

2. Start thinking about your overall Action Plan. What are your goals for Week 1? Write your goals in your Action Plan.

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3. Write the number of steps you take each day in your Exercise Log. If you do more exercise—keep track of it. Hopefully, you feel comfortable using your pedometer or fitness tracker.

4. Consider tracking at least one day’s consumption in your Food Diary.

5. To prepare for next week’s session on emotions and health, take time to read Session 2 in the workbook. Consider how the cancer experience has changed your outlook on life, your mental well-being, and your relationships.

CANCERTRANSITIONS: Immunotherapy Workbook

Notes

CANCERTRANSITIONS: Moving Beyond Treatment

Emotions & Health

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Session

Many individuals who receive immunotherapy have metastatic or advanced cancer. Your emotions may run high during and after your immunotherapy treatment. It will be very important to talk about your emotions. This section will provide guidance. There are also resources at the end of this workbook.

Introduction Emotions and Health: Distress and Cancer Coping with Emotions Talking About Feelings When and Where to Get Help Dealing with Cancer…. Again Making the Mind-Body Connection I am Not in Treatment: What Now? Relationships with Family, Friends, and Co-Workers Emotional Closeness and Intimacy Sexual Health and Intimacy

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Key to Improving Relationships: Communicate Fertility and Infertility

SESSION

TWO CONTENTS

Practical Matters: Employment, Health Insurance, and Medical Costs Finding Meaning in Your Cancer Experience Weekly Wellness Assignments CANCERTRANSITIONS: Moving Beyond Treatment

“I need this honesty. I realize that what has happened isn’t a result of my lifestyle. I realize that I’m not alone in the way I feel about this cancer.”

Introduction Cancer can be life changing. It can affect how you feel, think, or act. Some changes may be positive. Your priorities may become clearer. You may feel new energy to focus on what is important in life. Cancer can also bring unwelcome changes. You may have pain, stress, or practical worries as a result of your cancer experience.

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The focus of the Cancer Transitions program is on reducing stress and improving your quality of life. Just as you need to take care of your body after treatment, you need to take care of your mind. Emotional highs and lows are part of life. However, people cope with them differently, especially the lows. How we cope with our emotions can affect our quality of life and even our overall health. In this session, we will take a close look at coping. How you handle the ups and downs of life is a measure of your coping ability. We will discuss healthy ways to cope with the normal stress that may accompany cancer, treatment, and its aftereffects. We will also help you learn how to better use the coping skills you already have, and introduce new tools, such as mind-body activities. You will be encouraged to think about aspects of your life you might want to change. Together, we

CANCERTRANSITIONS: Immunotherapy Workbook

will start to lay out steps you can take to make those changes to improve your emotional stability. The goal is to help you find the emotional and practical tools and support you need to move forward in life. In the Research: The Unmet Needs of Cancer Survivors Across cancer types, a substantial number of our patients experience anxiety and depression. One-half of our General Registry participants were at risk for clinically significant anxiety and 4 out of 10 were at risk for clinically significant depression. Managing the long-term emotional effects of cancer will become paramount as survival rates increase and cancer becomes more of a chronic condition”- The Cancer Experience Registry, 2020 Report This is what people in the report tell us about living with cancer:

1. Over one-half of all cancer patients/survivors and 7 out of 10 Caregiver Registry participants reported substantial concern about illness progression or recurrence.

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2. 41% were moderately to very seriously concerned about changes or disruptions in work, school, or home life 3. 40% were moderately to very seriously concerned about thinking clearly (“chemo brain” or “brain fog”)

CANCERTRANSITIONS: Moving Beyond Treatment

Emotions and Health: Distress and Cancer Most people who have cancer feel sadness, loss, or worry at some point. When these feelings linger for prolonged periods or interfere with day-to-day life, survivors experience distress. Distress can make daily tasks, including getting follow-up care, seem overwhelming or draining. With distress, life is harder and less enjoyable. Distress can include feeling worried, sad, angry, lonely, or afraid. More severe distress may lead to anxiety or depression. Distress can relate to any aspect of your life. Pain can cause distress, as can money troubles, relationships, or fear that cancer will return.

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It is normal for people who have had cancer to experience distress. However, when distress lasts a long time or becomes chronic, it is important to pay attention to it. If you suspect that you might be experiencing distress, talk with the group facilitator or with your health care team. Remember, you do not have to live with distress, and you are not alone. There is support for cancer-related distress, starting with this group. The first step is to measure distress and identify its causes. There are many tools to help you address distress. Cancer Support Community’s CancerSupportSource (CSS) is a tool to measure distress. It is used at hospitals and cancer centers around the country. When you recognize distress and address its causes, you may begin to feel more in control. You may even find that you are more motivated to exercise, eat healthy, and socialize. Your quality of life may improve.

CANCERTRANSITIONS: Immunotherapy Workbook

The Cancer Transitions program is designed to help you:

1. Learn to cope with uncomfortable or difficult emotions in a healthy, effective way 2. Reduce chronic distress. (Using a distress screening tool like CSS will help you better understand if what you are feeling is chronic distress.) 3. Lean into emotions that help you feel more positive and hopeful Common emotions* after completing cancer treatment or a round of treatment include:

• Relief that it is over • A sense of the unknown • Cautious optimism • Anger or guilt about the cancer • Fear that cancer will come back (recurrence) • Fear of a new cancer

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• Grief and loss

• Concerns about living with cancer • Discomfort or shame • Uncertainty about the future • Frustration which can come from physical, social, or emotional aspects of the cancer experience. * You may feel some, all, or none of the above. Learn more about cancer and emotional distress.

CANCERTRANSITIONS: Moving Beyond Treatment

Coping with Emotions Many people feel anxious after active cancer treatment ends. It is normal to wonder if the treatment worked. Because immunotherapy patients have likely endured other cancer treatments, the ups and downs of earlier treatment may create add emotional pressure. Perhaps you are left with physical, practical, and emotional changes from previous treatment that make it difficult to enjoy daily life. How we cope with cancer and any resulting changes affects our wellbeing. Some people experience more distress than others. Some people need more help than others.

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Every person manages emotions in different ways. The ways people deal with emotions are often referred to as coping mechanisms. The diagnosis and treatment of cancer may have strained your coping mechanisms. Or, you may have found that you have coped pretty well. Many factors can affect coping. Your ability to cope at a given time may relate to all the other things going on in your life outside of cancer. You may have been coping with other major stresses even before cancer, so the cancer diagnosis and treatment could have stretched you to the breaking point. In this session, we encourage you to think about your feelings and how you are coping. When you better understand how you are coping, you become more comfortable with your emotions. You can start to take steps to improve your day-to-day life. Many tools can help you process or express your feelings. You may already know some coping tools that work well for you. Or you may be looking for new ones. Some people benefit from:

CANCERTRANSITIONS: Immunotherapy Workbook

EXERCISE

SPENDING TIME

READING OR WATCHING

OUTDOORS

TV OR MOVIE

MAKING MUSIC

COOKING

PARTICIPATING IN

WRITING OR KEEPING

DOING ARTS

A JOURNAL

AND CRAFTS

MEDITATION

PRAYER

LISTENING TO OR

OTHER HOBBIES TALKING WITH A SUPPORTIVE PERSON

The old saying is true, laughter is good medicine. Laughter decreases stress by releasing endorphins and increasing the body’s oxygen supply. (Find the humor in life and enjoy it with a hearty laugh. If you don’t know how to fill the prescription for laughter, hang out with friends who are funny, or access millions of videos on the internet. Laughing at life’s difficult moments can help you cope with the stress you have been through and may still be experiencing.

Talking About Feelings Many people find relief from stress and distress by talking about their feelings. Sometimes just saying describing your difficulties aloud can make certain problems seem less overwhelming. Talking also opens the door to getting help. Talking about your hurts and fears reveals opportunities for other people to provide emotional support or practical assistance.

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Talking about feelings is easier for some people than others. Practice can help. Start by writing them down. Consider keeping a journal. Write down your thoughts and fears when you feel overwhelmed. Expressing yourself on paper may help you make sense of things. As you understand your feelings better, you may find more words to describe them.

CANCERTRANSITIONS: Moving Beyond Treatment

Workbook Exercise 1. As you move forward, you may find it helpful to write down how you are coping with various stressors. This may help you find the best coping mechanisms.

2. Before I was diagnosed with cancer, I coped with difficult things by:

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3. Now that my cancer treatment is over, I have noticed that I am coping with stress by:

4. The things that cause me the greatest distress now that my treatment is over include:

CANCERTRANSITIONS: General Participant Workbook

When and where to Get Help If you are concerned about how you are coping, talk with your health care team. Be sure to explain how long you have struggled with your emotions and how your feelings are interfering with your daily life. Also highlight whether your friends have suggested getting help, since that might be a sign that your coping capacity has reached a noticeable limit. These signs may indicate that it’s time to get help:

• Persistent sadness or “empty” mood, not relieved by talking with others • Sleep disturbances, insomnia • Fatigue or restlessness • Significant changes in eating habits • Changes in body weight (loss or gain) • Difficulty concentrating or making decisions • Loss of interest in pleasure or ordinary activities • Changes in sexual desire (unrelated to treatment) • Trembling or shaking

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• Verbal or physical expressions of anger that seem out of proportion to the circumstances • Verbal expressions of anxiety • Irrational fears or a sense of panic

CANCERTRANSITIONS: Moving Beyond Treatment

Even people with excellent coping skills can be shaken by cancer and its treatment. There are steps you can take to feel better. If you are unsure about your coping skills or experiencing noticeable differences in your coping skills, it’s still a good idea to have a conversation with people who care about you. Remember, you are not alone. Help is available. If you don’t know where to get help, talk with the program leader or a social worker at your hospital. Reach out to your local Cancer Support Community or Gilda’s Club.

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Sometimes the hardest part of getting help is getting started. Finding the words to say what you need can be difficult. It can also be hard to accept that help from other people or organizations would make a difference. The resources suggested here are good starting points. They can help you figure out what kind of emotional or practical support you need and how to ask for it.

Dealing with Cancer…Again One of the most common feelings reported by survivors is the fear that their cancer will return. This fear can interfere with every aspect of life—eating, sleeping, working, playing and the ability to enjoy friendships and relationships. The fear care be triggered by reminders such as follow-up visits, birthdays, surgical anniversaries, someone else’s diagnosis, an ache in your body, or even a bump on your skin. Recurrence means the return of cancer. It may be local (where it was before), regional (in nearby lymph nodes or tissue), or distant (far from the original site).

CANCERTRANSITIONS: Immunotherapy Workbook

Tips for coping with the fear of recurrence • Learn the signs of recurrence for your type of cancer—be informed • Keep up with any medical tests or appointments your doctor recommends • Talk about it—express your feelings • Push away fears and negative thoughts by focusing on the positive aspects of your daily life and future plans - you do not have to be upbeat all the time, but look for the positive • Take control of what you can, make a plan, and know what you cannot control Learn about recurrence and plan for the future. Your doctor and other members of your health care team can help. When you have questions, write them down and bring them to your office visits. The internet is full of information, but not all of it is accurate. The end of this workbook contains a list of reliable sources for health and medical information. Your facilitator and your health care team can provide more resources.

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If your cancer returns, the Cancer Support Community’s Open to Options program can help you with treatment planning, should the need arise.

CANCERTRANSITIONS: Moving Beyond Treatment

Workbook Exercise 1. Have you had to cope with the fear of recurrence? What can you do to alleviate your fear?

2. What else can you do to learn more about your cancer, your health, and your options?

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MAKING THE MIND-BODY CONNECTION Our bodies and minds are connected. Finding ways to “relax” can help reduce your level of stress. It can improve your body function and your general quality of life. For example, you may notice that you feel better when listening to music. Activities that encourage you to focus on your thoughts, breathing, and movement at the same time are called mind-body activities. Focusing on these activities can have a positive effect on your health, reducing your stress, anxiety, and pain level. Consider trying mindful meditation, imagery, yoga, or Tai Chi. Relaxation Exercise (This is designed for you to listen to the instructions. Ask someone to read it to you or record yourself reading it aloud on your phone or other device and play it back for yourself.)

CANCERTRANSITIONS: General Participant Workbook

• Begin with a few moments of breathing and relaxation. • Once you are relaxed, give yourself some time to let your imagination flow. • Try to remember a situation in which you experienced love or peacefulness. Perhaps you might choose a memory of happiness or compassion and care. Be open to all the ideas or images that arise spontaneously in your imagination, as long as it conjures up a positive emotional state. Choose one of these experiences to specifically focus on for a while. • As you hold this special experience in your mind, allow all of your senses to help intensify your memory. That is, imagine what you heard during this experience; what you smelled, tasted, and saw; and how it felt in your body. Take your time and enjoy. • When your image is clear and vivid, let it bring back the emotions you originally felt. Allow those emotions to fill you, especially in your heart. Let yourself become filled with the positive emotions of that memory. • Now, as you breathe in, let your breath join with your positive feelings and feel them spread throughout your body. If you choose love, then let yourself be filled with a loving feeling. If you choose happiness, let that emotional energy radiate throughout your body. Enjoy! That is the point of using imagery for wellness!

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• When it is time to end, let your image slowly dissolve away and sit quietly, releasing tension every time you breathe in and out. Sit still for a moment before rising and returning to normal activity.

CANCERTRANSITIONS: Moving Beyond Treatment

I am Not in Treatment: What Now? Not having treatment to focus on can feel unnerving. During treatment, life often revolves around a schedule of medical visits. When that ends, people sometimes feel aimless or uncertain of what comes next. This is understandable. How do you return to your old life when so much has changed? What used to be “normal” may not feel that way again for a long time, or ever. Not being in treatment marks a turning point, but toward what? It may help to view this new era as a new baseline in your life: the start of a “new normal.” The new normal reflects how your life and thinking have changed as a result of cancer.

Norma w e N l he

The new normal is an adjustment period after you have completed treatment. It’s not so much “getting back to normal” as it is finding out what’s normal for you now. People often say that life has new meaning or that they look at things differently. Your new normal may include: • Making changes in the way you eat and what you do • New or different sources of support • Permanent scars on your body • Not be able to do some things you used to do more easily • New routines than you had before • Emotional scars from going through so much (source: https://www.cancer.gov/about-cancer/coping/survivorship/new-normal)

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Many people who have been treated for cancer still experience certain symptoms and side effects. Please don’t accept these as a new normal without talking with a doctor. Many lingering side effects and symptoms are treatable. If your doctor is not responsive, ask to see a doctor who specializes in palliative care.

Workbook Exercise 1. How do you feel about not being in treatment?

2. How does life feel different?

3. What are your hopes for the coming months or years?

Relationships with Family, Friends, and Co-Workers Your network of support—your relationships at home, at work, and elsewhere—can make a difference in how you cope with life during and after cancer treatment. Those relationships can contribute to feelings of anger, sadness, and loneliness; or those relationships can contribute feelings of comfort, love, and support. Your relationships with others can change after treatment. You may notice how your experience affects you and your: FAMILY

FRIENDS

INTIMATE PARTNERS

CO-WORKERS

Your friends and family may want to help you after active treatment ends, but they don’t know how. Your needs are different now than they were during active treatment. You may not want or need as much help. People will not know what you want or need unless you tell them.

CANCERTRANSITIONS: General Participant Workbook

It can be useful to put together a list of tasks where help would be appreciated. MyLifeLine.org can make staying connected to people in your life easier. It can be tiring to update everyone individually, or uncomfortable to ask for help. MyLifeLine allows you to create a personal page. Use this page to let the people in your life know how you are feeling and when their help would be useful. Family Relationships Can be Stressful Due To...

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• The need to switch roles from caring for others to being cared for yourself • Your wish to protect your children from the fears and stresses of your cancer • Your need for more practical help, and sometimes disappointment when the help doesn’t come • A history of strained relationships, possibly due to substance use, violence, lack of acceptance of lifestyle choices, or simply personality differences • Disagreements around choices you have made related to cancer • Lack of resources like adequate housing or enough food • Family members’ not understanding the physical or emotional impact of cancer • Guilt that you may have passed on a high risk of cancer to your children

CANCERTRANSITIONS: Immunotherapy Workbook

Family relationships are complicated. Some of us are fortunate to have a loving, supportive family. But even loving families can add to the stress of learning to be a cancer survivor. Others of us do not have family in our lives, or we simply cannot rely on our family members. In some cases, friends are more like family than our siblings, parents, or children. In any situation, cancer can bring change. It can bring families together or divide families. It is hurtful when family members disappoint us, especially at times when we most want their support. Within families or couples, we have roles. Cancer can change those roles. For example, you may try maintaining your role as protector and caretaker, even when you long for someone to care for you. Cancer treatment can be draining. If you were the main money earner, your family may expect you to return to that role right away, but you may long for time to heal and rest. You may want time with family without cancer as the focus. Cancer survivors often comment that others do not understand the toll that treatment takes. When you feel drained or misunderstood, you may find it difficult to ask for and receive help. Cancer is a lifealtering experience. What you felt was important before may carry less meaning now, and these changes in priorities can be confusing to family and friends.

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In this program, we help you try to find new ways to cope and communicate. We discuss where to go for support. If appropriate, we can help you find support groups, couples’ workshops, family counseling, educational programs, and religious/spiritual retreats.

CANCERTRANSITIONS: Moving Beyond Treatment

Impact on Children and Teens When you have children and teens at home, they may be foremost on your mind. One of the hardest parts of parenting with cancer is telling your children that you have cancer. You have passed the difficult period, and your family adapted to your being in treatment – maybe well or maybe not so well – but you got through it. Now you are in a new stage. This stage may mean more changes for your children. Changes may be positive. You may have more time and energy for them. You may be able to take on more parenting responsibilities again. Your family may welcome a return to the old normal. Or, they may have gotten used to or preferred some of the new routines. Maybe they took on some responsibilities they enjoy, like driving.

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Cancer has had an impact on everyone in your household. If older kids or teens have taken on more chores, now is a good time to thank them and reward them in some way. If you are not already doing so, take this time to check in with your children and teens. Older kids and teens might worry that they will get cancer one day. Talk with them about their risk. Your health care team can give you the information you need. If their risk is higher, start talking about how you can work together as a family to reduce risk, like exercising or eating better. Talk openly with them. Children of different ages bring different levels of understanding, so tailor your conversation to their level. Use the Cancer Support Community’s resources for tips on how to talk to children and teens.

CANCERTRANSITIONS: Immunotherapy Workbook

Remember to listen to what they are saying. Encourage your children to ask questions, then try to answer their questions or promise to help them find answers. Reassure them that you love them, and that they are cared for just like before cancer entered their world Find out who their friends are and connect with their parents or guardians. Completing that circle can be helpful, especially if your kids are not talking much with you. Signs to watch for that suggest a child could use some outside help:

• Changes in sleeping patterns • Change in behavior or performance at school or activities • Getting in arguments or fights with friends • Emotional withdrawal For more on how to talk to children and teens, refer to The Cancer Support Community’s https://www.cancersupportcommunity.org/ article/talking-kids-teens-about-cancer

Friends and Co-Workers Cancer can change relationships with friends and neighbors as well. People you do not expect to step up may turn out to be great sources of support. You also may find new friends – people you meet in the hospital or in a support group. The dynamics of friendships and other relationships can change again when you no longer need help. How do you transition relationships to a place that feels right now?

CANCERTRANSITIONS: Moving Beyond Treatment

Many people living with cancer continue working throughout their treatment. Some cancer survivors work part-time and return to full-time work after completing treatment. If you work outside the home as a volunteer or employee, much of your time is spent with co-workers. Your co-workers can have a large influence on your emotional health and well-being. They may be very worried about you. Or they may not truly believe you have had cancer, especially if you look healthy. You may not be the same employee you were before, because you may not have the same level of energy, or you may have different priorities now. You may have lingering symptoms or side effects that affect your productivity. A lot can change in your work life as a result of your cancer treatment Lack of support at work can cross a legal line. If you think you are being treated unfairly because of cancer, you may find help from the legal resources listed at the end of this session. Several federal laws provide some protections and benefits for people with cancer and family caregivers:

• The Americans with Disabilities Act • The Family and Medical Leave Act You can find more information on legal protections at work for people affected by cancer from www. triagecancer.org and www.cancerandcareers.org.

CANCERTRANSITIONS: Immunotherapy Workbook

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Some people may have disappointed you earlier in your cancer journey. Everyone handles illness differently. We also don’t always know what others are struggling with at a given time. It is okay to feel hurt when someone disappointment you, but it is also okay to forgive if having this person in your life is important.

Workbook Exercise 1. Write about a specific relationship or situation in your life that may have been affected by cancer.

2. When (in what situations) do you feel that family members or friends get impatient with you— or you get impatient with them?

3. What type of support do you need from your co-workers or employer?

4. Have you found supportive services through the government or a nonprofit organization that helped with the transition back to work?

CANCERTRANSITIONS: General Participant Workbook

Emotional Closeness and Intimacy After having cancer, you may feel alone. You have had a lifechanging experience. You may look or feel different. You may feel like even the people closest to you do not understand what you have been through. You may just want some time alone. This is understandable. Yet, most of us benefit from close connection with others, both emotional closeness and physical closeness. Emotional closeness includes feeling loved, valued, and understood. It often occurs during simple conversations with another person. Physical closeness can include a whole range of acts: holding a grandchild on your lap, hugging a friend, having a therapeutic massage, or sexual intimacy. Sometimes people who have had cancer say their relationships with family and friends are stronger as a result. Others find that they need to rebuild certain relationships Wherever you are, this new stage is likely to bring some transition. Communication is very important to building close connections. In relationships, not talking about your thoughts or feelings can add stress. It can leave people feeling unseen or misunderstood. For example, if you fear how your partner will respond to changes to your body, you may avoid sex or activities that could lead to sex, such as a date night. As a result, you may miss out on opportunities for emotional intimacy that come from being alone together. Instead, try talking with your partner. Tell him

CANCERTRANSITIONS: Immunotherapy Workbook

or her about your worries and let them respond. If or when you are ready for physical intimacy, approach it in small steps. Tell your partner what feels comfortable or uncomfortable. You may feel safer asking your partner not to touch certain parts of your body until you give the okay. Let communication, not an act, be your goal. It isn’t always easy to start these conversations. It may feel like there is never a good time. Here are some tips for more effective conversations. More on communication can be found further on in this chapter. • If possible, pick a calm and quiet time to talk. • Speak in “I” sentences. Try to avoid telling the other person what you think they want or expect. Talk about how you feel or what you need. • Listen to their words. Let your partner know that you hear them. Even if you can’t be exactly the person your partner wants you to be right now, you can let them know they are heard.

Sexual Health and Intimacy Cancer can affect sexual health and intimacy in many ways. If sex is an important part of who you are or your relationships with others, then the disruption to your sex life can cause distress. The following may interfere with sexual health and intimacy after cancer:

• Loss of sexual desire or interest • Pain from genital caressing or penetration • Pain during or after sex • Trouble getting and keeping an erection • Difficulty reaching orgasm

• Changes in orgasm intensity • Vaginal dryness • Vaginal or anal stenosis (narrowing or shortening of the opening) that interferes with penetration • Body image concerns • Feeling distracted or difficulty being in the moment • Depression or anxiety • Anxiety about having sex • Side effects of medication • Low energy (may be helped by more rest, healthy eating, and physical activity) • Relationship strain that affects your interest or comfort in sex with your partner The first step in getting help is talking about it. This can be hard for many people. Keep these tips in mind: Talk with your health care team. The more you share, the more they can help you or refer you to someone who can help. They may be able to suggest or prescribe treatments for physical symptoms. Not all doctors have experience with sexual health. If your doctor does not answer your questions, try a specialist with training in the sexual side effects of cancer, such as: • Urologist – For men who are unable to sustain an

erection, a urologist may be able to help. Urologists can offer medical treatment such as pills, penile injections, or even surgery to insert a penile

CANCERTRANSITIONS: Immunotherapy Workbook

prosthesis. The ability to have firm erections can be a boost to interest in sex. • Gynecologist – If you experience vaginal dryness

or discharge that affects sexual pleasure, see a gynecologist. Some treatments can help, including over-the-counter lubricants and moisturizers, prescription topical hormones, and dilators.

• A doctor who focuses on sexual health – For

example, some hospitals or cancer centers offer SHE visits that address sexual health for women.

Ask your doctor if the medications you take may decrease your desire for sex. You may be able to try a different drug or lower dose. If you have a partner, talk with them about how you feel. Work together on how to deal with times when only one of you is interested in sex. It is important to communicate with each other. These conversations can also help you become closer. If it’s hard to talk about it, you may find couples therapy helpful. Therapy also may help if there is a loss of trust or attraction between you and your partner. Remember there are many different ways to have sex and feel sexual. If you are struggling with how sexual health affects a relationship, look for other ways to be sexually intimate. Use your imagination and be creative! Sexual pleasure can be achieved alone. If you feel comfortable with self-touch or masturbation, take some time to relax in private, perhaps after a bath or shower. It may take some patience and practice to feel sexual pleasure again. CANCERTRANSITIONS: Moving Beyond Treatment

You can feel intimacy with another person in many different ways. Gentle touching, holding hands, kissing, and hugging can help you feel closer and more connected to another person.

If your mind wanders in a way that interferes with sexual pleasure, try focusing on a detailed sexual fantasy. It can be a real or imagined sexual experience. This is also an area where mindful meditation may help. Practicing mindfulness can help you learn how to tune out disruptive thoughts and be in the moment. If you think you are depressed, counseling may help. People who are depressed often lose interest in sex. Although antidepressants can help your mood and may be important for serious depression, these drugs can interfere with sexual desire. They also can make it hard to reach orgasm (especially for women). Healthy exercise, rest, and nutrition may help you feel less tired and reduce physical pain, giving you more energy for sex. If sexual pleasure is important to you, and it’s not getting better, you may want to seek help from a sex therapist or sexual health specialist. You can find one through the American Association of Sexuality Educations, Counselors, and Therapists at www.aasect.org/referral-directory.

CANCERTRANSITIONS: Immunotherapy Workbook

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Other cancer survivors may have tips to share. If you feel uncomfortable bringing up sex in a support group, ask the leader privately to raise the topic. You are probably not the only person with questions or concerns.

Workbook Exercise 1. Write down at least two positive changes you have noticed since your cancer diagnosis related to emotional or physical intimacy.

2. Write down a specific change that would increase emotional intimacy in your life.

3. Write down a specific change that would increase sexual pleasure or physical intimacy in your life.

4. In the next week, take those two first steps. You can do it!

CANCERTRANSITIONS: General Participant Workbook

Key to Improving Relationships: Communicate “It helps to hear from other people with problems and learn how they handle things.” Facing Forward: Life After Cancer Treatment also provides tips for dealing with intimacy issues and family relationships. All of the tips are variations on one message: Communicate. The same advice applies to your relational efforts with friends and co-workers.

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• Talk about your feelings. • Be kind to yourself, as well as to your family and friends. • Be clear and direct to the best of your ability. • Find support when you need it. Sometimes you need to be with someone who can simply listen. Quiet understanding works well for some relationships. You may enjoy sharing an activity, sitting, or cuddling. When it is time to talk, be as clear and direct as you can. Remember, however, to be sensitive to your listener. A little tact can help you be heard. Even if you have healthy family and intimate relationships, you may need support outside of your usual network of family, friends, or religious congregation. Support groups can provide this extra help and useful information. People appreciate being able to talk about their feelings with others who understand. You can offer and gain support and hope from each other.

CANCERTRANSITIONS: Immunotherapy Workbook

If support groups are not for you, you may want to try talking with a counselor. Counseling may include individual sessions with a mental health professional such as a clinical social worker, psychologist, licensed professional counselor, or psychiatrist. While support groups are often free, counselors charge a fee for the service they provide. It is usually an hourly fee, and often a sliding scale. If you have insurance, find out what type of counseling it will cover. You may need a referral from your primary care doctor, or you may have to choose from an innetwork list of counselors. It is okay to interview a few counselors to find one who is a good fit for you. Be sure to ask about their experience working with people who had or have cancer. To find counselors skilled in oncology, reach out to your hospital or the Cancer Support Community or Gilda’s Club near you. Many cancer centers offer support groups, often divided according to the type of cancer, gender, or age. It is getting more common, too, for cancer survivors to train to become peer counselors (sometimes also called patient navigators). They use their own experience to help others.

The Cancer Support Community provides face-to-face and online support groups, as well as educational programs, to connect survivors and caregivers with others who are also experiencing cancer. For those who do not feel comfortable in groups, the Cancer Support Community can connect you with professional counselors for individual support. Visit www.CancerSupportCommunity.org or call the Cancer Support Community Helpline at 888-793- 9355.

CANCERTRANSITIONS: Moving Beyond Treatment

Fertility and Infertility Cancer and cancer treatment can affect the ability to have biological children. If you are of child-bearing age, hopefully, you discussed this issue with your doctor before starting treatment. If you did not, ask to be referred to a doctor who focuses on fertility. There are ways to preserve eggs and sperm for later use. As you explore your options, call your insurance company to find out what egg or sperm preservation methods are covered. If you have already started the process of planning for children, you may be uncertain of what to do now that you are not in active treatment. Whether you feel ready to move forward or not, it is a good idea to seek support around this topic. There is no one right answer for everyone. Talk with your doctors about your physical health and what the future holds. Also consider your emotional health, financial resources, and lifestyle. If you plan to use in vitro fertilization and are female, find out about your options for carrying the baby to term. Do you plan to do so yourself or use a surrogate? If you hope to carry the baby, how long do you need to wait before you can safely start the conception process? If you are considering foster care or adoption, talk with an adoption social worker. People who have had cancer can adopt, but you may need to do a little research to find a situation and agency that is a good fit for you.

CANCERTRANSITIONS: Immunotherapy Workbook

Genetics The National Cancer Institute (NCI) has found that inherited genetic mutations play a major role in about 5 to 10 percent of all cancers During diagnosis and treatment, you may have learned that you carry a gene mutation that increases the risk of certain cancers. This information may affect your plans to have biological children. Even if you did not test positive for a gene linked to cancer, you may worry about cancer in your family. If you are in this situation, talk with a genetic counselor. They can help you understand your risk and support you in making decisions about having children.

Seek Support The desire to have children is deeply personal. Learning that your options have changed can be heartbreaking. It can affect your relationships and the way you view your life. If cancer has affected your ability to start or expand your family in any way, seek support.

Practical Matters: Employment, Health Insurance, and Medical Costs Immunotherapy is expensive, even if some portions of the treatment are covered under clinical trials or through a drug company. In light of this, you need to become knowledgeable about your financial resources. This section will review government-funded programs, commercial insurance, and self-pay options. Self-pay patients are individuals who don’t have insurance and must pay for some or all of their care out of their own pockets.

(source: https://www.cancer.gov/about-cancer/causes-prevention/genetics#).

CANCERTRANSITIONS: Moving Beyond Treatment

An important individual to meet when discussing finances will be your social worker, financial coordinator, or financial navigator. Your cancer program or community resources will have someone available to discuss your concerns. The government-funded insurance programs include Medicare, Medicaid, the State Children’s Health Insurance Program (SCHIP), the Department of Defense TRICARE and TRICARE for Life programs (DOD TRICARE), the Veterans Health Administration (VHA) program, and the Indian Health Service (IHS) program. There are requirements for acceptance into one of these programs. The financial professional will be able to assist you with the application process.

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There are more than 900 commercial insurance plans available in the United States. The top five include Anthem, Centene, UnitedHealthcare, Humana, and Health Care Service Corporation (HCSC). Most commercial insurance is provided as group-sponsored insurance, offered by an employer. There are important terms that you will need to understand with commercial insurance such as: premiums, co-pays, deductible, and out of pocket expenses, and in and out of network benefits. You will also pay different amounts of money for different services, for example, primary care visit will cost less than a specialist visit.

CANCERTRANSITIONS: Immunotherapy Workbook

Insurance Terminology: Premiums: The amount that must be paid for your health insurance or plan. You and/or your employer usually pay it monthly, quarterly or yearly. Co-pays: A fixed amount (for example, $15) you pay for a covered health care service, usually when you receive the service. The amount can vary by the type of covered health care service. Deductibles: The amount you owe for health care services your health insurance or plan covers before your health insurance or plan begins to pay. Out of pocket expenses: The most you pay during a policy period (usually a year) before your health insurance or plan begins to pay 100% of the allowed amount. In-network: The percent (for example, 20%) you pay of the allowed amount for covered health care services to providers who contract with your health insurance or plan. Out of network: The percent (for example, 40%) you pay of the allowed amount for covered health care services to providers who do not contract with your health insurance or plan. The Cancer Support Community offers various educational resources (including video) to help you understand the unique financial circumstances that face cancer patients, survivors and their families. Program participants say the videos on navigating the financial and insurance mazes are especially helpful . https://www.cancersupportcommunity.org/ search?search=ruby

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• How to file an appeal • Financial Toxicity • I Lost My Health Insurance. What Now?

Source: https://www.cms.gov/CCIIO/Resources/Forms-Reports-and-Other-Resources/Downloads/uniform-glossary-final.pdf CANCERTRANSITIONS: Moving Beyond Treatment

• How to File for Unemployment Benefits • Applying for Disability Benefits Some cancer patients don’t have medical insurance coverage. They pay for services themselves. People in this circumstance are referred to as self-pay patients. There are some important questions to ask if you are in this category: • Why do I not have insurance? Is COBRA an option? (COBRA: The U.S. Department of Labor gives workers and their families who lose their health benefits the right to choose to continue the groups health benefits provided by their group health plan for limited periods under certain circumstances, such as voluntary or involuntary job loss, reduction in the hours worked, a transition between jobs, death, divorce, and other life events. Source: https://www.dol.gov/general/topic/health-plans/ cobra#) • How long have you not had insurance? Did you just lose your job? Again, reach out to your medical care team to assist you with your financial issues. There are many more options to discuss than listed in this section.

Finding help with practical matters The term “practical matters” covers everything from transportation to a doctor’s appointment, to childcare, to financial assistance with medical bills. Problems in any of these

areas are very common among people who have had cancer. These problems can cause great emotional distress. When you do not have enough food or stable housing, it is hard to focus on other aspects of life. If you find yourself in this situation or worry that you are getting close to this situation, talk with the group leader or a social worker at the hospital right away. They can connect you to resources that can help. Problems with work, childcare, and insurance can also become hurdles in your efforts to move forward. Health care is very costly in the United States. Many people who have had cancer find themselves unable to pay bills or in debt. It can be hard to talk about, especially if financial difficulties represent an unexpected or a dramatic change from life before cancer. The first step is to talk with someone. A social worker or financial counselor can help you break down your challenges into smaller steps. When you succeed in overcoming the first few steps, your problems might start to become more manageable. These resources can also offer guidance: • The Cancer Support Community offers a library of online resources related to health insurance and the cost of care. These booklets include tips on budgeting and how to deal with insurance companies. • Cancer Support Community’s Helpline includes a financial navigator. Call 888.793.9355.

• Facing Forward: Life After Cancer Treatment devotes an entire section to practical matters after cancer treatment. This section includes a resource guide of non-profits and government agencies that can help address issues related to employment, health insurance, and help with medical costs. • Cancer and Careers (www.cancerandcareers. org) and the Cancer Legal Resource Center (www. cancerlegalresources.org) have more information on employment and legal rights. • Triagecancer.org offers resources and information on insurance, legal rights, estate planning, finances, and many other topics.

Finding Meaning in Your Cancer Experience Having cancer often leads people to examine their lives and look for meaning. Sometimes, the search for meaning can result in positive changes in your life. When you first learned you had cancer, you may have thought about the possibility of dying. You may have considered who and what you would leave behind and what you would like to do with the time you have left. Now that you are away from treatment, you may revisit this. You may become more intentional about how you spend your time. People who have had cancer sometimes find new meaning by:

• Making time to do enjoyable things • Finding a new hobby or learning a new skill • Spending more time with loved ones • Changing jobs or finding work that is more fun or

meaningful • Helping others directly through volunteer work or cancer advocacy • Focusing on health • Making changes in personal priorities • Savoring the joy and beauty of each moment • Starting or expanding a spiritual or religious practice Everyone’s experience with cancer is different. You may feel gratitude for all you have. Or you may have moments of bitterness and doubt. Or perhaps you experience both feelings, depending on the day. The randomness of cancer can make you ask, “Why me? What did I do to deserve cancer?” If you find yourself dwelling on these thoughts, talking with someone – a friend, counselor, support group, or member of the clergy – may be helpful. Some people look for meaning by trying to make a difference in the world, on whatever scale they can. Some survivors choose to work with an organization that helps people with cancer or their families. Other people decide to participate in research. Still, others may dedicate time to a cause that is unrelated to cancer. There is no one right answer in the search for meaning after cancer treatment. Each quest is unique, and each person’s decisions are valid. As people contemplate why cancer came into their lives, many seek to learn from the experience, viewing cancer as a second chance, or an opportunity to reexamine old patterns and make changes.

Workbook Exercise 1. How do you view the meaning of your life since cancer?

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2. What changes have you made, or would you like to make, in the way you live life now.

CANCERTRANSITIONS: General Participant Workbook

Weekly Wellness Assignments 1. List two personal changes that you’d like to make to improve your relationships or your well-being.

2. Complete the CancerSupportSource tool.

3. Exercise Log—fit exercise into your life and complete your Exercise Log for next week. Remember your pedometer or fitness tracker!

4. Action Plan—Write your Action Plan goals for the week in your log.

5. In the next session, we will discuss nutrition and dietary health. Pay attention to your diet this week. Use the food diary to chart at least one day’s food intake. If you have questions throughout the week—write them down for next week’s discussion with our Nutritionist.

CANCERTRANSITIONS: General Participant Workbook

Distress is an unpleasant emotional state that can affect how we think, feel and act. This brief questionnaire is designed to help you identify your worries and concerns and what kind of information and supportive care might be most helpful to you.

Workbook Exercise 1. Today, how CONCERNED are you about. Communicating with your doctor

Not at all Slightly Moderately Seriously Very Seriously 2. Today, how CONCERNED are you about... Changes or disruptions in work, school or home life

Not at all Slightly Moderately Seriously Very Seriously

3. Today, how CONCERNED are you about... Feeling sad or depressed

Not at all Slightly Moderately Seriously Very Seriously 4. Today, how CONCERNED are you about... Pain and/or physical discomfort

Not at all Slightly Moderately Seriously Very Seriously 86

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CancerSupportSource® (CSS) is CSC’s psychosocial distress screening tool and referral program for people affected by cancer.

5. Today, how CONCERNED are you about... Body image and feelings about how you look

Not at all Slightly Moderately Seriously Very Seriously 6. Today, how CONCERNED are you about... Feeling nervous or afraid

Not at all Slightly Moderately Seriously Very Seriously 7. Today, how CONCERNED are you about... Worrying about the future and what lies ahead

Not at all Slightly Moderately Seriously Very Seriously 8. Today, how CONCERNED are you about... Making a treatment decision

Not at all Slightly Moderately Seriously Very Seriously

CANCERTRANSITIONS: General Participant Workbook

9. Today, how CONCERNED are you about... Intimacy, sexual function and/or fertility

Not at all Slightly Moderately Seriously Very Seriously 10. Today, how CONCERNED are you about... Feeling lonely or isolated

Not at all Slightly Moderately Seriously Very Seriously

Not at all Slightly Moderately Seriously Very Seriously 12. Today, how CONCERNED are you about... Problems in your relationship with your spouse/partner

Not at all Slightly Moderately Seriously Very Seriously

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11. Today, how CONCERNED are you about... Health insurance or money worries

13. Today, how CONCERNED are you about... Feeling too tired to do the things you need or want to do

Not at all 88

CANCERTRANSITIONS: General Participant Workbook

Slightly Moderately Seriously Very Seriously 14. Today, how CONCERNED are you about... Exercising and being physically active

Not at all Slightly Moderately Seriously Very Seriously 15. Today, how CONCERNED are you about... Thinking clearly (e.g., "chemo brain," "brain fog")

Not at all Slightly Moderately Seriously Very Seriously 16. Today, how CONCERNED are you about... Tobacco or substance use - by you or someone in your household

Not at all Slightly Moderately Seriously Very Seriously Important Note: For each question that you marked as moderately to very seriously concerned, please let your facilitator know how they can help you. You may want to consider these options – I’d like… To schedule time with the facilitator to talk about my concerns Additional information or resources No action needed at this time CANCERTRANSITIONS: General Participant Workbook

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Notes

CANCERTRANSITIONS: Immunotherapy Workbook

Notes

CANCERTRANSITIONS: Moving Beyond Treatment

Eating Well and Staying Active

Session

Eating Well and Staying Active Eating Well Nutrition Beyond Cancer The Value of a Healthy Weight Crafting a Diet that is Right for You Eating Right: Guidelines for Good Health Nutrient-Rich Foods Dietary Supplements Tips for Changing Your Diet Overcoming Challenges to Healthy Eating The Value of a Support System Getting Started – Food in Review Weekly Wellness Assignments Staying Active Find Your Motivation How Exercise May Help with Cancer Talking to Your Doctor

SESSION

THREE CONTENTS

How to Customize Physical Activity How to Maintain a Physical Activity or Exercise Plan Build-in Rest and Relaxation Weekly Wellness Assignments CANCERTRANSITIONS: Moving Beyond Treatment

Introduction Even when you are not in active treatment, taking care of your body is important. When you eat well and stay active, you feel better and more in control of your health. Setting and keeping goals related to diet and exercise is not easy, but it can pay off in the long run. In this session, we look at ways to be more intentional about eating and physical activity. You will set goals and start to identify and work through any barriers to meeting those goals. Everyone will work at their own pace. We will meet you where you are in your healthy living journey, whether you have already started making changes on your own or whether you were tempted to skip this session because this type of change feels impossible. Together, we will come up with a plan to help you move towards a healthier lifestyle. As always, we will take a gradual approach. When you start with small steps and add more small steps as you go along, you may find that the steps can become habits. These habits provide the basis for a healthier lifestyle.

Eating Well Eating is a big part of life. Many factors drive our food choices – taste, budget, health, emotions, and availability. Food can be fun. Food can also be a source of stress, especially if you do not have enough of it or because eating raises emotional or health issues. You may miss foods that you can no longer eat due to health issues.

CANCERTRANSITIONS: Immunotherapy Workbook

Everyone has a different relationship with food and eating. In this part of the session, we will discuss how your diet can help strengthen your body. We will go over the ingredients of a healthy diet. We will celebrate how you may already be eating well. We will also help you find areas where there is room for improvement and help you think about the steps you can take to improve you approach to food. Most importantly, we will address the very real hurdles that can make it hard to eat well even when you are committed and trying your best. Though it is easier said than done, eating the right kinds of foods before, during, and after treatment will help you feel better and stay strong.

This program focuses on eating well for good overall health. We offer general guidance based on current research and advice. Please talk with your doctor or a registered dietitian-nutritionist for specific advice based on your health and family medical history. They can help you develop a nutrition plan based on your health needs.

Nutrition Beyond Cancer For years, doctors have searched for magical foods or diets that will prevent cancer growth. They have made strides, but there is still much to be learned. Even though no lifestyle change can promise to keep cancer from developing or coming back, eating right can boost your

CANCERTRANSITIONS: Moving Beyond Treatment

odds of staying healthy. We know that there are many benefits to a healthy diet. Eating healthy foods can increase energy, improve mood, and help manage and prevent some diseases. Our program focuses on eating right as a cancer survivor and what that means and why it matters. You may receive conflicting advice regarding nutrition and cancer. The news or the Internet may emphasize a new finding or unusual study. Keep in mind that making changes to your diet based on just one study is typically a bad idea. The guidance here relies on the recommendations of the American Institute for Cancer Research (AICR).The AICR recommendations are based on all the research on a topic thus far, not just one study. Nutrition advice also varies based on the type of cancer or cancer treatment you had. Other health conditions or risk factors also can affect dietary recommendations too. Thinking about changing your diet can be overwhelming. Eliminating a favorite food can feel like a loss or punishment. In this session, we will focus on making gradual changes to your diet. We hope you will walk away with a better understanding of food and nutrition, and some next steps you can take to find your healthier self. When needed, we will connect you with resources to find free or low-cost food, get specific dietary advice, or obtain support.

The Value of a Healthy Weight Keeping your weight within a healthy range is important for your health, but it can be very hard to do. Some people reach a healthy weight by eating well. Some find that adding regular physical activity helps. Even so, achieving a healthy weight can be difficult.

CANCERTRANSITIONS: Immunotherapy Workbook

General Dietary Tips Strive for a weight that feels healthy to you. Aim to eat a diet rich in whole grains, vegetables, fruits, and beans. Try to limit fast foods and processed foods high in starch, fat, and sugar, including sugary drinks, if possible. Try to make red and processed meats a smaller part of your diet.

Why maintain a healthy weight? There are many benefits to maintaining a healthy weight. A high body weight usually means a higher amount of body fat, which has been linked to a number of cancers. Excess weight is also linked to a higher risk of other diseases, like heart disease and Type 2 diabetes. Being underweight may negatively affect your health too.

Try to limit alcohol intake.

How do I know if I have a healthy weight? There are different ways to measure a healthy body weight. One starting point is to talk with your doctor. Ask him or her if you have a healthy weight. Also, ask how they determine what is healthy. If they rely on body mass index (BMI), ask how BMI relates to someone of your race and ethnicity.

Avoid vitamin supplements for cancer prevention. The best nutrients come from foods.

What if it’s not possible to achieve a healthy weight? Many factors influence weight, including heredity, personal history, and other health conditions. Your weight can even be affected by the medicine you take. For example, hormones to prevent cancer from coming back can cause weight gain. Rather than focus on the number on a scale, think instead about what you can do to eat better, move more, and feel healthier. Weight is just one part of a larger picture of good health. It also may be the hardest aspect of good health to change. In this program, we focus on eating right and staying active. We will support you and encourage you to think about steps you can take to begin to improve your diet and move more. You are not alone.

CANCERTRANSITIONS: Moving Beyond Treatment

Crafting a Diet that is Right for You As we talk about food and eating, think about what you like to eat. In the coming sections, we will focus on foods you should try to eat more of and some to eat in moderation. We will encourage you to think about whether there are ways to adapt the foods you like best so that they can be part of a healthier diet. You may already practice some healthy eating behaviors you don’t even realize. Congratulate yourself if you ever do the following:

• Cook or bake your food • Eat or prepare foods with spices • Enjoy foods from other cultures • Eat a variety of foods • Make a food choice based on health like turning down a second dessert or choosing baked food over deep friend food • Try to eat fruits, vegetables, or whole grains

Eating Right: Guidelines for Good Health The foods you choose can make a difference in your health and survivorship. There are no guarantees that anything you do will keep cancer away. However, eating healthy foods and being active can help you feel stronger and more in control. Eating healthy foods may help you: • Regain strength and rebuild tissue – Eating more protein can help you rebuild muscle and continue to heal.

• Protect your bones – Foods high in calcium (dairy, certain vegetables, or legumes)can help keep your bones healthy. • Find more energy – When you start to eat healthier foods, you may find that you have more energy or more lasting energy. • Prevent illness – While there is no sure way to keep cancer away, some research suggests that a diet rich in colorful plant foods like fruits, vegetables, whole grains, beans, and nuts contains many cancer-fighting ingredients. These foods provide antioxidants and phytonutrients (plant nutrients) that can help prevent cancer. They help by protecting your cells from damage, keeping your immune system strong, and reducing inflammation. • Achieve a desirable weight – If you lost weight due to cancer, eating foods that contain nutrients and healthy fats may help you regain pounds. Likewise, if cancer or cancer treatment have resulted in unwanted weight gain, you may start to lose weight when you focus more on healthy foods. Eating right starts with selecting a variety of foods every day. No one food contains all the nutrients you need. These positive eating habits offer a starting point:

Focus on plant-based foods. These foods are good sources of complex carbohydrates, vitamins and minerals, and fiber. Many can be eaten raw or turned into tasty snacks or meals with simple preparation.

Go for color with fruits and vegetables. Take in nature’s food rainbow of yellow, orange, red, green, and blue/purple. Raw or

cooked vegetables, fruits, and fruit juices provide the vitamins, minerals, and fiber you need.

Emphasize whole grains like whole-wheat bread or tortillas, oats, and brown rice.

Include legumes or pulses. Pulses are foods that are grown to eat the seed. They include dry peas, lentils, and all kinds of beans (kidney beans, black beans, lima beans, black-eyed peas, and chickpeas). These foods do not cost a lot of money and are full of protein and vitamins.

Look for healthy proteins. Select low-fat milk products and modest portions of lean meat, fish, and/or skinless poultry. Plant-based foods can also be excellent sources of proteins. Try beans, dried peas, lentils, and soy foods.

Cook healthy. Not all cooking methods are the same. To get the most out of your food, try lower-fat cooking methods such as broiling, steaming, and poaching rather than frying or charbroiling.

Spice it up. Spices add flavor and sometimes even have health benefits. Try out different seasonings. Find ones you like and use them on vegetables, beans, and whole grains. You may discover some new favorites.

Take it slowly and aim for moderation. It can be hard to eat healthy all the time. Recognize that some of the foods you will have to limit may be your favorite foods. Instead of cutting out your favorite foods entirely, figure out if there are ways to include them in your diet in a limited way. This might mean

cutting the portion size or the number of times per week you eat them. Save some foods for special occasions. The eating goal is to create habits you can sustain. You also might find that when you start eating more plant-based foods and lean proteins, you are not as interested in some less healthy foods. Visit the Cancer Support Community website to learn more about nutrition for cancer survivors and try some suggested recipes.

RECOMMENDATION: Because scientists do not know which compounds in vegetables and fruits are most protective, the best advice is to eat a variety. Some research recommends eating 5 servings of a variety of colorful vegetables and fruits each day. Cancer survivors in particular are encouraged to consume more than 5 servings a day, ideally 8–10 servings. As a standard, 1⁄2 c. is a serving.

Workbook Exercise 1. How many servings of fruits and vegetables do you eat each day?

2. What could you do to consume more fruits and vegetables?

3. What are some whole grains, legumes, and pulses you enjoy (e.g., popcorn, baked beans, sunflower seeds, peanut butter)?

Dairy, Fats, and Healthy Bones The advice around dairy, fats, and healthy bones can be confusing. We will try to simply the advice. Bone health is important for cancer survivors. Cancer and cancer treatment can weaken bones and lead to osteoporosis. You can read more about cancer and bone health here. One of the ways you can keep your bones healthy is by eating foods that are rich in calcium and vitamin D, which includes most dairy products.

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RECOMMENDATION: Try to

eat at least 3 servings of whole grains every day, rather than other starches. One serving could be: 1 slice whole grain bread • 1/2 cup whole grain pasta or rice •1 six-inch whole wheat tortill • 1/2 whole wheat bagel or pita • 6 whole wheat crackers

There is still a lot to learn about cancer and dairy products. Studies have shown that dairy products can help prevent osteoporosis and protect against colon cancer. Early studies in other cancers, including breast cancer, have had mixed findings. A diet high in dairy and calcium may increase the risk of prostate cancer but this theory is still under study. Even so, dairy products can also be high in saturated fat and eating too much saturated fat can raise the risk of heart disease. Moderation is key. Unless you are told otherwise by a doctor, include dairy in your diet. Select reduced-fat, low-fat, or non-fat dairy products. For example, use nonfat or 1 percent milk. (Refer to the box to learn more about lactose intolerance.) If you choose to limit your dairy intake, make sure your diet includes other sources of protein and calcium. Foods containing calcium include leafy greens, broccoli, canned salmon/sardine with bones), almonds, rhubarb, or calcium-fortified foods. Some people with cancer try a low-fat diet. A low-fat diet is one in which only 20% of daily calories come from fat. The benefits of this are still being studied. Early research suggests that a low-fat diet may help post-menopausal women with breast cancer live longer . If you and your family choose to follow a very low-fat diet, it is important to do so carefully. Make sure that the diet is nutritionally balanced. Aim to consume enough calories to maintain a healthy body weight. A fat gram has more than double the calories of a gram of carbohydrate or protein. When you limit fat intake, you may lose weight that you do not want or need to lose. https://www.aicr.org/research/the-continuous-update-project/meat-fish-dairy/

Fats: Many diet plans emphasize paying attention to the amount and types of fats you consume. Keep in mind that not all fats are the same. Try to focus on healthy fats. Avoid - Trans fats that are found in many deep-fried foods like French fries and donuts; packaged cookies, crackers, and chips; shortening, and stick margarine. Trans fats are also called “partially hydrogenated oils.” Try to avoid trans fats as much as possible. Limit - Saturated fats that are found in animal proteins such as bacon, sausage, cheese, whole milk, and fatty meats. Limit saturated fats in your diet. Choose more often - Unsaturated fats (are considered healthy fats) that are found in olives, olive oil, canola oil, avocado, tuna, salmon, and nuts. It is important to read nutrition labels carefully. Some products labeled “low fat”, or “reduced fat” may contain almost as much fat as the standard product. When you are reading a food label to see how many grams of fat are in a serving or for any reason, be sure to check the serving size and the other ingredients. For example, low fat or reduced fat foods may have high levels of sugar or another ingredient you are trying to avoid or limit. Refer to the section titled Shop Smart for more tips.

Foods to Limit or Avoid As you focus on eating more of the foods that will keep you healthy, you will become more aware of foods to cut back on. The list of foods to limit may be foods that are high in sugars or starches. You may also want to avoid foods that have proven to increase the risk of some cancers, like red meat or alcoholic beverages. 104

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LACTOSE INTOLERANCE: WHAT IT IS AND HOW TO EAT AROUND IT Dairy products provide protein and calcium, but they do not agree with everyone. If you notice cramps, bloating, gas, or diarrhea after eating or drinking dairy, you may be lactose intolerant. Lactose is the major sugar found in milk. Lactose intolerance is caused by a short supply of the enzyme lactase. Lactase is produced by cells that line the small intestine. Lactose intolerance is very common in the United States. Around 30 to 50 million Americans are affected. It is more common among African Americans, American Indians, and Asian Americans. Symptoms can range from mild to severe. If you have trouble digesting lactose: Learn which dairy products and other foods you can eat without discomfort and which ones you should skip.

Consider using lactase liquid or tablets, which are available at supermarkets and drugstores, to help digest the lactose and eliminate discomfort.

Fast Foods and Processed Foods When we are in hurry, we often reach for foods that are not as healthy. It is easy to pick up chicken nuggets or grab cookies or chips. These foods lack healthy nutrients. They are also likely to be high in calories, sugar, salt, or fat. Try to find other quick snacks you enjoy. Keep them nearby for when you are hungry. Snack ideas: dried fruit, nuts, or carrots, and hummus.

Choose foods that are high in calcium and low in lactose, such as lactosefree milk (Lactaid milk), soy milk, calcium-fortified orange juice, dark leafy vegetables (e.g., spinach, greens, and broccoli), yogurt, canned sardines, and salmon with the bones.

RECOMMENDATION: Aim to keep fat intake to about 20 to no more than 35 percent of daily calories, or about 44 to 78 grams of fat per day, if you are eating a 2,000 calorie a day diet. Look at the Total Fat Grams on food labels and simply add up the numbers on a daily basis.

Red and Processed Meats Red and processed meats are the staples of many diets. You may have grown up eating red meat every night. Breakfast meant bacon or sausage. Lunch involved deli meats. Dinner involved red meats such as beef, lamb, and/or pork. While these foods have protein, they also can be high in fat. Processed meats include bacon, chorizo, cold cuts, hot dogs, pepperoni, and sausage. These foods are smoked, cured, and treated with chemicals. As doctors have studied dietary links to cancer, they have found that a diet rich in red and processed meat has been shown to increase the risk of colon cancer. Another drawback to a heavy meat diet is that meat is also filling and may leave little room for vegetables, fruit, and other plant-based foods. If you choose to eat red meat, make it a small part of your diet. Select lean cuts such as tenderloin, sirloin, round cuts, and center cuts. Consider reserving meats for special occasions or eating smaller portions when you eat them. When you start to find spices you enjoy, you may find ways to prepare turkey, chicken, and legumes in ways that are just as tasty and fulfilling as red meat.

Sugar-Sweetened Drinks There is no evidence that sugar itself increases the risk of cancer. Yet, doctors agree that cutting back on drinks with added sugar is a good idea. Drinking sugary beverages regularly can cause weight gain and obesity, which increases the risk of cancer. These drinks also can fill you up and leave less room for nutritious foods. If you like drinks with added sugar, cutting back can be hard. Start slowly by limiting the number of sugary drinks

RECOMMENDATION: Try limiting red meat portions to less than 18 ounces a week. For example you might have at most a 3 oz. cooked portion six times/week. Three oz. is around the size of a deck of cards. Work towards having at least one meatless day each week, and add days as you are able. Eliminate processed meats or only eat them very occasionally.

https://www.aicr.org/cancer-prevention/recommendations/limit-consumption-of-red-and-processed-meat/

you consume in a day. Try substitute drinks. Drink more water, nonsweetened flavored water, tea, or coffee. Try adding fruits or herbs like lemon, mint, or basil to your water for flavor. Make it a habit to carry water or another healthy drink with you.

Alcoholic Beverages Alcohol (beer, wine, or hard liquor) is linked to increasing risk for many cancers, including breast, colorectal, esophageal, larynx, liver, mouth, stomach, and throat cancer. There are several reasons for this:

• Alcohol can increase estrogen levels and cause tissue damage. • In the body, alcohol becomes acetaldehyde, which is known to cause cancer. • Alcohol can interfere with how the body processes folate and other nutrients. • Also, alcohol is high in calories and may lead to weight gain. AICR recommends that cancer survivors avoid or limit alcoholic drinks. If you choose to drink beer, wine, or mixed drinks, limit yourself to one drink per day for women and two drinks per day for men. If you enjoy or depend on alcohol, you may find this difficult to lower your consumption. Try these tips: • Instead of reaching for alcohol, try a mixed fruity drink or sparkling juices. Kombucha is a popular drink that contains only trace amounts of alcohol. • If certain hours of the day trigger your impulse to drink alcohol, plan to do something during that time, like going for a walk.

https://www.aicr.org/cancer-prevention/food-facts/alcohol/

• Do something else when you would have had a drink. For example, go for a walk. • Avoid alcoholic cocktails, since they can be high in sugar. Try a sweet alternative like fruit or a fruit ice pop. If you are concerned about your alcohol dependence, ask for help. Talk with your health care team. They can refer you to support groups like Alcoholics Anonymous, which holds open meetings all over the world. The locations are not listed on their website. Instead, they provide numbers for local chapters. Visit aa.com to learn more.

Shop Smart Food is one of many areas where it pays to be an educated consumer. You may be limited by what you can afford or what is available. If so, this advice may not feel very helpful right now. If you are in this situation, talk with the group leader for ideas for how to find affordable healthy foods in your area. The group leader might be able to help you find other places to buy or obtain food. In general, food boxes offered by local foods banks will include vegetables, legumes, and the healthy foods we discuss here. When you have the option of being selective about the types of foods you purchase, make a habit of reading food labels. Pay attention to the: Serving Size – The serving size is written on every food label. It is not standard across products. When you compare two products, make sure that you are comparing the same serving size. When you start to pay attention to this, you may be very surprised by what you find. Ingredients – Read the list of ingredients (sometimes the print is very small). Notice the order in which the ingredients appear. They are listed in order of how much is in the product. For example, if https://www.aa.org/pages/en_US/find-aa-resources

you are looking for whole grains, look for “whole” or “grain” as the first ingredient. Some foods claim to be made with whole grains but list the grain far down on the ingredient list. When the whole grain symbol appears on food packaging, you can be sure that the food is a source of whole grain. As you read ingredients, you may find that two products with the same name might be very different when it comes to ingredients. Nutrition label – Notice the amount of healthy ingredients like vitamins and protein. Also pay attention to the sugar, salt, and fat content. If a product contains fat, look at the kind of fat. Reading food labels is a great way to start being more thoughtful about what you eat. You may not always make the healthier choice, but you will understand the choice you are making.

Dietary Supplements The demands of work, family, and busy schedules may leave little time for cooking. Just sitting down to an unhurried meal can be a challenge. Making a healthy meal without using packaged or processed foods can seem impossible. When you know you can’t eat right, it may be tempting to replace healthy foods with vitamins. The scientific thinking around vitamins has changed over the years. For cancer prevention, AICR recommends we focus on real foods, not supplements, as our source of vitamins and nutrients.

Tips to Change Your Diet Ideas for healthy eating are even easier to find today, thanks to the Internet. There are literally thousands of great food preparation ideas at our fingertips. The cookbook market is also strong. There are books for every taste and dietary need. Maybe you like food apps, or perhaps you like to write down your own recipes. Whatever your style, here are some tips to make pursuing a healthy diet easier.

Workbook Exercise 1. How will you plan to increase the amount of nutrient-rich foods in your diet?

2. What supplements do you take right now, if any?

3. Has your health care team recommended any supplements, or advised you not to take certain things?

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Low Tech and Loving It

Hit Me with Your Best Apps

Plan meals • Look at cookbooks.

• Go to the web.

• Buy yourself a new one focused on healthy eating.

• Search by ingredients.

• The library can also be a great source of cookbooks to try.

• Get to know the seasonings you like, and search by them.

• If you find a recipe you like, copy the page or write it down.

• Subscribe to a food or cooking blog. A favorite blog can get you excited about cooking.

• Look for recipes in newspapers and magazines. • Keep a list of favorite meals in your kitchen. • Or use a dry erase or chalkboard to plan out the week.

Make shopping lists • Keep a pad of paper in your kitchen. • Write down foods as you think of them. • This is especially useful if you live withother people or have help with your shopping.

• Find recipes that look or sound good.

• Each recipe has room for comments. • Reading and adding comments can be a way to connect to other people who share your taste and interests in eating healthy.

• Use the notes section of your phone. • Start a list and add to it as you think of things. When you’re near a store, open it and go shopping. • Try a shopping list app. There are many free ones. • Tell “Alexa” or another device. Just say “add lettuce to the shopping list.” By the time you are ready to shop, you will have a whole list ready to go on your phone.

Be positive! • Leave yourself notes of encouragement. • Buy art or tchotchkes with positive messages.

• Change the background on your phone, tablet, or computer. Put up a message of support or an image or photo that inspires you or makes you feel confident.

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Overcoming Challenges to Healthy Eating Congratulations on making it this far! We covered a lot of material. By now, you probably have some ideas for the first steps you can take to improve your diet. You may have noticed some things you already do well. Excellent! But you also may have started to foresee a challenge. Many factors can interfere with eating goals. Some roadblocks are emotional, as we discussed in the last session. Other obstacles may relate to cancer treatment, where we shop, how much money we have, or other issues related to food such as eating disorders.

Difficulty Eating Cancer treatment can cause a loss of appetite, or discomfort in biting, chewing, or swallowing. If you are having problems getting enough nutrients because you are not hungry or it hurts to eat, be sure to tell your doctor and seek advice from a registered dietician. You can also read sections of Facing Forward: Life After Cancer Treatment that deals with these issues: problems with your mouth or teeth (page 26), lost appetite (page 28), and trouble swallowing (page 29).

Finding and Affording Healthy Foods The sad truth is that even in the United States, healthy foods are not sold everywhere. Fruits and vegetables – that look good to eat – can be especially hard to find. Your community may

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lack grocery stores with healthy-looking produce. Or maybe the stores do not sell the foods you want to buy. You may have heard the area where you live described as a “food desert.” If you have a family, it might be even harder to find enough food. If you have children at home, you may elect to feed them first. This may not leave much or any food for you, let alone healthy food. As you start to eat healthier, you also may notice that you are spending more money. Healthy foods sometimes cost more. Produce also does not last as long as processed foods. This can be frustrating. It may feel impossible to add healthy foods to your diet. If this sounds familiar, take a step back. In most situations, there are ways to make gradual changes to improve your diet. Consider focusing on one food that you can cut back on or eliminate. Choose a realistic goal. Small steps are key to longterm change. Try these tips: • When possible, plan ahead. It’s hard to make healthy choices at the last minute, especially when other family members are involved. If possible, only buy enough food for the coming week. • Try canned or frozen fruits and vegetables. They may be more affordable and are a good choice if there is no added salt, sugar, or fat. • Include legumes in your diet. Beans, split peas, chickpeas, and lentils are low-cost healthy foods. • Use spices. Spices add a lot of flavors. They

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may seem costly, but they last awhile. It’s helpful to shop around to find good prices. Try a dollar store or other inexpensive supermarket. Ethnic food stores sometimes sell spices in bulk for very reasonable prices. • If money is very tight, you may be unable to afford any food, let alone healthy food. If you have trouble finding or affording healthy food, talk with the group facilitator or a member of your health care team. There are many resources for healthy eating. Websites like feedingamerica.org and findfoodbank.org can help you locate food in your community. As a nation, we have become more aware of the food challenges facing many people, not just cancer patients, and more options for finding food have emerged. The internet has opened the door to new ways to shop. Also, around the country, more people have started growing their own food. Even in big cities, you may be able to find fresh foods grown in neighborhood gardens. We can also work together to set realistic food goals based on the food choices that are available to you in your community. The idea is to take small steps, not do everything at once. You can still be successful in this program, even on a limited budget.

Food and Emotional Health Food can assume many roles in our lives. For some of us, food represents more than nutrition or pleasure. Eating or thinking about food can trigger uncomfortable feelings. Food and eating may

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represent an area of your life that feels out of control. On the other hand, eating can be an area where we channel our need for control. If you find it difficult to make dietary changes or anticipate that it will be difficult, seek help early on. Talk with a dietitian who may be able to refer you to resources specifically designed for cancer survivors with eating issues. The resources listed in the second module may be useful as well. Most importantly, remember that you do not have to do this alone. We all start from different places when we begin to make changes for our health. Working with someone who understands what you are going through will help you set realistic goals and find success.

The Value of a Support System Finding a buddy who can keep you company and offer support as you make lifestyle changes to live better after cancer treatment will help you succeed. You may choose to make these changes with a partner, a family member, or a roommate. Or you may look for support outside of your home. You may want to reach out to friends, family members, your religious community, or a support group to help you. You may find someone who can help with diet and exercise goals, and someone else to help with emotional health goals. Organizations like the Cancer Support Community can provide support or direct you to other resources. We encourage you to engage with a supportive group of people. They can help keep you on a healthy track throughout this program and beyond.

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That said, many people succeed without a buddy simply by using a food log marking your progress on a food log can be satisfying enough. It is rewarding to see healthy foods on the list. For some of us, the voice on an app that says “way to go” keeps us going. There are many ways to achieve good health. We will talk about what might work best for you and work together to set up a system to help you succeed.

Getting Started - Food in Review By now, you probably have a good idea of how to get started. The following list is a review of some key points. As you go over them, look for places where you are doing well and areas where you could improve. Use these reminders as a guide to develop your goals. If you feel overwhelmed, ask for support. A registered dietitian with experience in cancer nutrition can help. The dietician can give you a personalized diet assessment and nutrition recommendations. You can locate one through the Academy of Nutrition and Dietetics website. www.eatright.org. Click on “find an expert.” Focus on fruits and vegetables. Aim for 8–10 servings of fruits and vegetables every day? Choose a variety. A serving is a ½ cup. Emphasize whole grains every day. Try for 3 servings a day.

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Include beans and legumes. Try to incorporate lentils, chickpeas, soy/navy/kidney beans in your diet. Aim for 4–5 times/week. Choose foods with healthy fats such as nuts, seeds, avocados, olives/olive oil, canola oil, flax seeds, and fish. Limit processed foods that contain unhealthy fats and added sugar. Give yourself a high five for skipping the donuts and fast food. Carry around healthy snacks so you are less tempted by unhealthy alternatives. Cook with a wide variety of spices and herbs. Spices and herbs have many cancer-fighting properties. They also offer a tasty and healthy alternative to sugar and salt. Drink water. If your urine is darker than a pale straw color or has a strong odor, you probably need to drink more water. Get enough rest. When we are overtired, we are more likely to make unhealthy food choices.

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EATING WELL

SQUAREPATTERN

RECIPIES

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RECIPIES

Chocolate Mint Smoothie Chocolate Mint Smoothie

IngredIents Ingredients

2 cups chocolate almond milk

21cups almond milk Tbspchocolate peanut butter 1 1Tbsp butter Tbsppeanut cocoa powder mint leaves (depending on 1 5-8 Tbsp cocoa powder size and how minty you want 5-8 leaves (depending on size and how minty you themint smoothie) 1 cup oats, uncooked want the smoothie) 1 avocado 1 cup oats, uncooked cup ice 1 1avocado 1 cup ice

www.CancerSupportCommunity.org

Directions

1. Place all ingredients in high-powdered blender. 2. Blend until smooth. TIP: If you have leftover smoothie, pour into popsicle mold for a refreshing and delicious treat!

Prep time: 5 minutes Cook time: 0 minutes

KiwiSmoothie Green Smoothie Kiwi Green Ingredients IngredIents

kiwi 22kiwi 1 banana 1 ½banana cup plain Greek yogurt ½1 cup Tbspplain honeyGreek yogurt cup fresh kale 1 1Tbsp honey cupfresh 2% milk 1 1cup kale 1 cup 2% milk

www.CancerSupportCommunity.org

Directions

1. Place all ingredients in high-powdered blender. 2. Blend until smooth. TIP: Freeze leftover smoothie in a popsicle mold for a delicious summer treat!

Prep time: 5 minutes Cook time: 0 minutes

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EATING WELL Colorful Lentil Soup Colorful Lentil Soup

IngredIents Ingredients

3 Tbsp extra virgin olive oil

31Tbsp extra virgin olive oil medium yellow or white onion, finely diced 1 medium yellow or white onion, 1 celery stalk, thinly sliced finely diced 2 medium carrots, peeled and sliced mediumstalk, zucchini, diced 11celery thinly sliced 1 garlic clove, pressed or minced 21medium carrots, peeled and tsp salt, more to taste sliced 1 tsp ground turmeric tsp ground cumin diced 11medium zucchini, ½ tsp dried thyme 11garlic clove, minced 28 oz can dicedpressed tomatoes,or drained cupsalt, red lentils, well 11tsp morerinsed to taste cups of low sodium vegetable broth 132tsp ground cups water turmeric pepper to taste 1Black tsp ground cumin 1 cup baby kale or spinach, chopped ½Juice tsp ofdried thyme ½ a lime, or to taste

1 28 oz can diced tomatoes, drained 1 cup red lentils, rinsed well 3 cups of low sodium vegetable broth 2 cups water Black pepper to taste 1 cup baby kale or spinach, chopped Juice of ½ a lime, or to taste

Directions

TIP: If you have leftover smoothie, pour into popsicle mold for a refreshing and delicious treat!

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SQUAREPATTERN

Prep time: 15 minutes Cook time: 35 minutes

1. Warm olive oil in a large soup pot over medium heat. 2. Add the onion and garlic, stirring occasionally until the onions have softened, about 5 minutes. 3. Meanwhile, dice and slice the celery, carrots, and zucchini. Add these to the onion mixture as well as the seasonings (salt, turmeric, cumin, and thyme). 4. Stir often and cook until fragrant, about another 5 minutes. 5. Pour in the tomatoes, lentils, broth and the water. Bring to a boil and then lower the heat and simmer, partially covered. 6. Cook for 20 to 30 minutes, or until the lentils are tender but still hold their shape. 7. Add the chopped greens. Cook for about 2 minutes, or until greens have wilted. 8. Remove the pot from heat and stir in the lime juice. Taste and adjust salt and pepper to taste. Serve immediately.

RECIPIES

Creamy Beet Hummus Creamy Beet Hummus

IngredIents Ingredients

medium beets, beets, peeled cutcut 22medium peeledand and into 1-inch chunks into chunksor canned 1 ½1-inch cups cooked beans, rinsed and 1 garbanzo ½ cups cooked or canned drained garbanzo beans, rinsed and 2 cloves garlic 2 Tbsp extra-virgin olive oil drained 1 Tbsp tahini 2Juice cloves garlic from half a lemon (about 2 Tbsp) 23-4 Tbsp extra-virgin olive oil Tbsp warm water 1½ Tbsp tahini tsp cumin

Juice from half a lemon (about 2 Tbsp) 3-4 Tbsp warm water ½ tsp cumin ½ tsp sea salt 1/8 tsp black pepper (optional)

½ tsp sea salt 1 /8 tsp black pepper (optional)

www.CancerSupportCommunity.org

Directions

Prep time: 15 minutes Cook time: 40 minutes

1. Preheat oven to 400°F. 2. Place beet chunks and garlic cloves in a bowl, drizzle with olive oil, and stir until evenly coated. 3. Place on a baking sheet and roast for 35-45 minutes or until fork tender, turning occasionally. 4. Remove from the heat and let cool slightly. 5. Transfer the beets and garlic to a food processor or blender. 6. Add the garbanzo beans, olive oil, tahini, lemon juice, warm water, cumin, salt, and pepper. 7. Blend for 1 minute, scrape down the sides and blend for another minute, adding more water or olive oil as needed until a nice creamy consistency. 8. Serving suggestions: pair with whole wheat crackers or soft pita bread; use as a dip for 9. raw or soft cooked veggies; use as a sandwich spread and layer turkey, cheese, and lettuce on top.

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EATING WELL White Fish Fish Tacos Strawberry Mango Salsa Salsa White Tacoswith with Strawberry Mango Ingredients IngredIents

cup orange ¼ cup ¼orange juicejuice 1 Tbsp honey 1 Tbsp1honey tsp cumin 1 tsp cumin 1 tsp paprika ½ tsp salt 1 tsp paprika ¼ tsp pepper ½ tsp salt 1 lb cod or other white fish ¼ tsp pepper 1 Tbsp olive oil ½ or cupother strawberries, diced 1 lb cod white fish 1 mango, diced 1 Tbsp olive oil

½ cup strawberries, diced 1 mango, diced ½ jalapeno (optional) ¼ cup cilantro, chopped ¼ cup red cabbage, chopped 1 lime, juiced 8 corn tortillas

½ jalapeno (optional) ¼ cup cilantro, chopped ¼ cup red cabbage, chopped 1 lime, juiced 8 corn tortillas www.CancerSupportCommunity.org

Directions

TIP: Use leftover fruit salsa to top chicken, vegetables, or black beans for a quick lunch or dinner.

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SQUAREPATTERN

Prep time: 10 minutes Cook time: 15 minutes

1. Combine orange juice, honey, cumin, paprika, salt and pepper in a large container. 2. Add fish and marinate for 10 minutes. 3. Heat olive oil in large skillet. Add fish and cook for 4-5 minutes on each side, brushing marinade onto the fish as it cooks. 4. While the fish is marinating, make the fruit salsa. Combine strawberries, mango, optional jalapeno, cilantro, cabbage, and lime juice. Store in the refrigerator until ready to use. 5. Once fish is cooked, heat corn tortillas in microwave for 15 seconds, wrapped in a paper towel or clean dish towel. 6. When you are ready to eat, make your taco. Add fish to the corn tortilla and top with fruit salsa.

RECIPIES

Ginger Turkey Soup Ginger Turkey and and WildWild RiceRice Soup Ingredients IngredIents

Tbsp olive oil ¼ cup 1orange juice ½ onion, chopped 1 Tbsp1honey cloves garlic, minced 2 carrots, chopped 1 tsp cumin 1 celery stalk, chopped 1 tsp paprika Zest of 1 lemon ½ tsp 1salt Tbsp ginger root, grated ½ tsp salt ¼ tsp pepper 4 cups chicken broth 1 lb cod or other white fish 1 tsp dried rosemary 2 cups diced 1 Tbsp olive oil or shredded

½ cup strawberries, diced 1 mango, diced ½ jalapeno (optional) ¼ cup cilantro, chopped ¼ cup red cabbage, chopped 1 lime, juiced 8 corn tortillas

turkey breast, cooked 2 cups wild rice, cooked

www.CancerSupportCommunity.org

Directions Prep time: 15 minutes Cook time: 35 minutes

1. Warm olive oil in a large soup pot over medium heat. 2. Add the onion and garlic, stirring occasionally until the onions have softened, about 5 minutes. 3. Meanwhile, dice and slice the celery, carrots, and zucchini. Add these to the onion mixture as well as the seasonings (salt, turmeric, cumin, and thyme). 4. Stir often and cook until fragrant, about another 5 minutes. 5. Pour in the tomatoes, lentils, broth and the water. Bring to a boil and then lower the hea and simmer, partially covered. 6. Cook for 20 to 30 minutes, or until the lentils are tender but still hold their shape. 7. Add the chopped greens. Cook for about 2 minutes, or until greens have wilted. 8. Remove the pot from heat and stir in the lime juice. Taste and adjust salt and pepper to taste. 9. Serve immediately. TIP: If you have leftover smoothie, pour into popsicle mold for a refreshing and delicious treat!

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EATING WELL LemonParmesan Parmesan Chicken Broccoli RiceRice Lemon Chickenwith with Broccoli Ingredients IngredIents

Tbsp olive oil, divided 2 Tbsp2 olive oil, divided 2 garlic cloves, minced, divided 2 garlic cloves, minced, divided 2 ½ lemons, zested and juiced 2 ½ lemons, zested and juiced 1 tsp honey 1 ½ lb chicken breast 1 tsp honey Salt and pepper 1 ½ lb chicken breast ½ cup Parmesan cheese, Salt and pepper divided 1 bunch broccoli ½ cup Parmesan cheese, divided 1 bunch broccoli

www.CancerSupportCommunity.org

Directions

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SQUAREPATTERN

Prep time: 30 minutes Cook time: 15 minutes

1. Combine 1 Tbsp olive oil, 1 minced garlic clove, lemon juice and zest, and honey. 2. Marinate chicken in mixture for 1-2 hours. 3. Heat remaining olive oil over medium heat. Add chicken and season with salt and pepper. Reserve marinade. 4. Cook for 3-4 minutes on each side. Add reserved marinade and deglaze pan with sauce. Cook for 1 minute and add ¼ cup Parmesan. 5. While the chicken is cooking, make the broccoli rice. Roughly chop broccoli and add to a food processor. Process until broccoli is in small pieces, similar to rice. 6. Heat pan and remaining minced clove of garlic. Add riced broccoli, salt, and pepper and cook for 5 minutes. Add 2 Tbsp Parmesan and a squirt of remaining ½ lemon. Stir tocombine. 7. Place broccoli rice in a bowl and top with cooked chicken and remaining Parmesan cheese.

RECIPIES

Mango Lassi Overnight Mango Lassi Overnight Oats Oats

Ingredients IngredIents

2 mangos, peeled diced 2 mangos, peeled andand diced ½ cup plain Greek yogurt ½ cup 2plain Greek yogurt tsp pure maple syrup 2 2 tsp pure maple /3 cup milk syrup 2 2/3 cup Tbsp milk chia seeds ½ cup oats 2 TbspFruit chiaorseeds nuts to top ½ cup oats Fruit or nuts to top

Directions

www.CancerSupportCommunity.org

Prep time: 10 minutes Cook time: 0 minutes

The night before: 1. Combine mangos, yogurt, syrup, and milk in blender. Blend until smooth. 2. Mix in oats and chia seeds. 3. Pour into two separate bowls and place in the refrigerator. The next morning: 4. Top with fruit, nuts, or eat plain.

withCompote Fruit Compote PolentaPolenta with Fruit Ingredients IngredIents

3 cupswarm warm water 3 cups water 1 cup cornmeal 1 cup cornmeal 1 cup cold water ½ tsp salt water 1 cup cold

3 Tbsp maple syrup, divided 3 cups frozen berries

½ tsp salt 3 Tbsp maple syrup, divided 3 cups frozen berries

Directions 1. Add warm water to pot and bring to a boil over medium heat. 2. While the water is heating up, mix the cornmeal with the cold water, stirring until combined. 3. Once the water is boiling, add the cornmeal mixture, 1 Tbsp maple syrup, and salt, cover, and simmer, stirring occasionally. www.CancerSupportCommunity.org 4. Cook for 10 minutes until water absorbed. 5. While cornmeal is simmering, add fruit and remaining 2 Tbsp maple syrup to small pan. 6. Heat over medium heat, until fruit cooks down into compote. 7. To serve, top cornmeal with fruit compote.

Prep time: 5 minutes Cook time: 15 minutes

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EATING WELL Stuffed Spaghetti Squash SavorySavory Stuffed Spaghetti Squash IngredIents Ingredients

Squash Squash 2 medium spaghetti squash (cut in half lengthwise; scoop out the seeds) 2 medium spaghetti squash Rice (cut in½ half lengthwise; scoop out cup wild rice ½ cup brown rice the seeds) 2 cups water Rice Dash of sea salt Filling ½ cup1 tbsp wildolive riceoil 2 leeks, chopped ½ cup2 garlic brown ricechopped cloves, 2 celery stalks, thinly sliced 2 cups water 1 tsp dried thyme ½ tsp seasalt salt Dash½ofcup sea chopped pecans Filling½ cup dried cranberries 1 Tbsp balsamic vinegar 1 tbsp1 olive oil syrup Tbsp maple ½ tsp ground black pepper 2 leeks, chopped ½ cup fresh parsley, chopped

2 garlic cloves, chopped 2 celery stalks, thinly sliced 1 tsp dried thyme ½ tsp sea salt ½ cup chopped pecans ½ cup dried cranberries 1 Tbsp balsamic vinegar 1 Tbsp maple syrup ½ tsp ground black pepper ½ cup fresh parsley, chopped Parmesan cheese, optional

Parmesan cheese, optional

Directions

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Prep time: 30 minutes Cook time: 15 minutes

1. Preheat the oven to 375°F. 2. Line a sheet pan with parchment paper and place the squash halves flesh side down on the pan. 3. Bake for 35-45 minutes, or until the squash is fork tender. 4. Cook the rice by placing the wild rice and the brown rice into a 2-quart pot. 5. Add the water and sea salt and bring to a boil. Then simmer covered for 40-45 minutes. 6. Prepare the filling while the squash is roasting and rice is cooking. 7. Heat the olive oil in a large skillet over medium heat. 8. Add the leeks and sauté for 2-3 minutes. 9. Add the garlic, celery, thyme, and sea salt and sauté for another 5 minutes until fragrant. 10. Stir the pecans and cranberries into the leek mixture and cook for another 1-2 minutes. 11. Add the balsamic vinegar and maple syrup. Stir until well mixed, and then remove pan from the heat. 12. As soon as rice is cooked, toss it along with the fresh parsley and black pepper into the skillet and stir until evenly distributed into the leek mixture. 13. Remove the cooked squash from the oven, turn the squash halves over, and fluff each half with a fork. 14. Divide the filling evenly between the four halves—gently mixing the stuffing into the squash strands and piling it up high as needed. 15. Bake for 5-10 more minutes in the oven if needed to heat through. 16. Top with optional parmesan, shredded cheese, and/or extra seasonings to taste. TIP: As a time-saver, use pre-cooked frozen, parboiled, or microwaveable rice.

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RECIPIES

Quinoa Tabbouleh Quinoa Tabbouleh

Ingredients IngredIents

1 cup quinoa, uncooked 1 cup quinoa, uncooked 1 cup diced tomatoes 1 cup diced tomatoes 1 cup diced cucumbers 1 cup diced cucumbers ½ cup diced red bell peppers ½ cup 1diced red parsley, bell peppers cup fresh chopped ½ cupparsley, fresh mintchopped 1 cup fresh lemons, juiced ½ cup 2fresh mint 2 Tbsp olive oil 2 lemons, juiced ½ cup feta cheese (optional) 2 Tbsp olive oil ½ cup feta cheese (optional)

Directions

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Prep time: 15 minutes Cook time: 15 minutes

1. Rinse and cook quinoa according to package instructions. 2. While quinoa is on the stove, combine the tomatoes, cucumbers, peppers, and herbs in a large bowl. 3. Once quinoa is cooked and cooled, add into the vegetable and herb bowl. 4. Add lemon juice and olive oil. 5. Top with feta cheese if desired.

Shrimp Bento Bowl Shrimp Bento Bowl Ingredients IngredIents

¼ cup lowlowsodium ¼ cup sodiumsoy soy sauce* sauce* 1 Tbsp vinegar 1 Tbsp ricericevinegar 1 inch fresh ginger, grated 1 inch fresh ginger, grated 1 Tbsp honey 1 Tbsp honey 1 lb small cooked shrimp, tails removed 1 lbpeeled smalland cooked shrimp, 2 cups cooked brown rice peeled and tails removed 1 cup diced cucumber 1 avocado, diced 1 cup carrot, cut into matchsticks Sriracha sauce (optional)

2 cups cooked brown rice 1 cup diced cucumber 1 avocado, diced 1 cup carrot, cut into matchsticks Sriracha sauce (optional)

Directions

1. To make dressing, mix soy sauce, vinegar, ginger, and honey together in a small bowl. 2. Towww.CancerSupportCommunity.org assemble your bento bowl, place brown rice in a bowl and top with vegetables and shrimp. 3. Toss with dressing and top with optional sriracha sauce. * May reduce soy sauce or replace with liquid aminos or homemade soy sauce as needed or less sodium content

Prep time: 20 minutes Cook time: 0 minutes

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EATING WELL Turkey and Barley Vegetable Soup Turkey and Barley Vegetable Soup Ingredients IngredIents

1 lb. ground turkey 1 lb. ground turkey 1 Tbsp olive oil 1 Tbsp¾olive oil cup pearled barley, uncooked ¾ cup3pearled barley, uncooked ½ cup water 1 onion, diced 3 ½ cup water 2 celery stalks, diced 1 onion, diced 1 zucchini, finely diced 1 yellow squash, 2 celery stalks, dicedfinely diced 1 14 oz can petite diced tomatoes 1 zucchini, finely diced cut green 1 14 oz can French beans, drained 1 yellow squash, finely diced 4 cups low sodium chicken broth 1 14 oz2can cupspetite water diced tomatoes 1.

1 tsp oregano 1 tsp salt ½ tsp pepper Tbsp fresh parsley Add3Parmesan barley, 1(optional) ½ cups water and pinch of salt in large pot. Bring to a www.CancerSupportCommunity.org

Directions

boil, then simmer and cover for 45 minutes until water is absorbed. 2. While barley is cooking, brown ground turkey in a medium skillet. Drain and set aside. 3. Heat olive oil into large stockpot. Add onions, celery, zucchini, and squash. Sauté for 5 minutes until onion is translucent. 4. Add tomatoes, green beans, remaining water, broth, oregano, salt and pepper. 5. Simmer for 20-30 minutes to soften vegetables. 6. Add turkey and barley to soup. Heat through. 7. Top with optional parmesan cheese.

Potato Frittata Potato Frittata Ingredients IngredIents 2 Tbsp oliveoil oil 2 Tbsp olive 4 medium potatoes, sliced thin 4 medium ½ tsp saltpotatoes, sliced thin ½ tsp salt Pinch of black pepper ½ cup unsweetened Pinch of black pepperalmond milk (or equivalent amount of ½ cup almond milk unsweetened of choice) 8 eggs ¼ cup cheddar cheese

Prep time: 10 minutes Cook time: 30 minutes 128

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Prep time: 45 minutes Cook time: 30 minutes

1 14 oz can French cut green beans, drained 4 cups low sodium chicken broth 2 cups water 1 tsp oregano 1 tsp salt ½ tsp pepper 3 Tbsp fresh parsley Parmesan (optional)

milk (or equivalent amount of milk of choice) 8 eggs ¼ cup cheddar cheese

Directions

1. Preheat oven to 400°F. 2. Heat olive oil in medium oven-safe skillet. Add potatoes and cook for 10 minutes on stove, stirring occasionally. 3. 3.www.CancerSupportCommunity.org Mix eggs, milk, and cheese together in a separate bowl. Add egg mixture onto the potatoes. 4. Cook on stove for 2 minutes or until sides are set. 5. Transfer to the preheated oven and cook for 15-20 minutes, until eggs are firm. 6. Allow frittata to rest for 5 minutes and then slice.

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RECIPIES

and Blueberry Crumble Pear andPear Blueberry Crumble

Ingredients IngredIents

4 pears, thinlythinly sliced 4 pears, sliced 2 cup blueberries 2 cup blueberries Tbsp pure maple syrup 1 Tbsp12pure maple syrup tsp lemon juice 2 tsp lemon 2 Tbsp juice whole wheat flour Tbsp ground 2 Tbsp2whole wheatflaxseeds flour ½ cup old fashioned oats 2 Tbsp ground flaxseeds

½ cup almonds, thinly chopped ¼ cup brown sugar ½ tsp cinnamon ¼ cup cold unsalted butter, cut into small cubes

½ cup old fashioned oats ½ cup almonds, thinly chopped ¼ cup brown sugar ½ tsp cinnamon ¼ cup cold unsalted butter, cut into small cubes

Directions

1. 2. 3. 4.

Preheat oven to 400°F. Mix fruit, maple syrup, and lemon juice in a bowl. Grease an 8x8 dish and add fruit mixture. In a separate bowl, combine flour, flaxseeds, oats, almonds, brown www.CancerSupportCommunity.org sugar, and cinnamon. 5. Add butter and mix with your hands or wooden spoon until butter is combined with dryingredients. 6. Top fruit with oat mixture. 7. Bake, uncovered for 20-25 minutes, until top is lightly browned.

Prep time: 15 minutes Cook time: 25 minutes

TIP: Add leftover crumble on top of yogurt, oatmeal, or cottage cheese for a healthy and flavorful breakfast.

Mixed Berry Yogurt Crepes Mixed Berry and and Yogurt Crepes Ingredients IngredIents

3 eggs 3 eggs 1 cup milk 1 cup milk ¼ cup water ¼ cup water ½ cup all-purpose flour ½ cup all-purpose flour ½ cup whole wheat flour ¼ tsp salt ½ cup whole wheat flour 2 Tbsp canola oil ¼ tsp salt 2 Tbsp pure maple syrup

2 Tbsp canola oil 2 Tbsp pure maple syrup 2 cups frozen mixed berries, thawed 1 cup vanilla yogurt 1 tsp cinnamon

2 cups frozen mixed berries, thawed 1 cup vanilla yogurt 1 tsp together cinnamoneggs, milk, and water. Add both flours and mix together gently. Whisk

Directions

Prep time: 50 minutes Cook time: 25 minutes

1. 2. Add salt, oil, and maple syrup. Mix to combine. 3. Let batter rest for 30 minutes. 4. After rest time, lightly grease skillet and heat over low heat. Add ¼ cup of www.CancerSupportCommunity.org batter into pan. 5. Swirl it around to get batter to spread over the skillet. 6. Cook for 30 seconds to 1 minute and flip crepe to the other side. To do this, loosen crepe with a spatula and quickly flip. 7. Cook on the other side for an additional 30 seconds. 8. Repeat with remaining batter. 9. To serve, add a dollop of vanilla yogurt and fruit inside each crepe. Sprinkle lightly with cinnamon and roll crepe like a burrito to serve. CANCERTRANSITIONS: Moving Beyond Treatment

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EATING WELL

Turkey Meatballs with Butternut Squash Turkey Meatballs with Sauce Butternut Squash Dipping Sauce Dipping Ingredients IngredIents

For Meatballs For Meatballs 1 lb ground turkey 1 lb ground turkey sauce 2 tsp Worcestershire 2 tsp ground sage sauce 2 tsp 2Worcestershire tsp ground rosemary Tbsp parsley 2 tsp 1ground sage 1 egg 2 tsp ¼ ground tsp salt rosemary ½ tsp pepper 1 Tbsp¼parsley cup chicken broth 1 egg ½ cup rolled oats For Dipping Sauce: ¼ tsp1salt tsp olive oil 2 Tbsp chopped onion ½ tsp2pepper cups frozen butternut squash, ¼ cupthawed chicken broth ½ tsp salt ¼ cup plain Greek yogurt 6 Tbsp chicken broth

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Directions

1. Preheat oven to 375°F. 2. Combine oats and broth and let sit to soften. 3. Add ground meat to the oats and mix in Worcestershire sauce, sage, rosemary, parsley and egg. 4. Form into 1-inch balls and place on baking sheet. 5. Bake for 20-25 minutes until browned. 6. While the meatballs are cooking, prepare the dipping sauce. 7. Heat olive oil in skillet over medium heat. Add onions and garlic clove and sauté until translucent. 8. Add butternut squash and salt. Cover skillet and steam for 10 minutes, until squash is soft. 9. Remove from heat, add Greek yogurt and chicken broth to combine. 10. Add to blender and puree until smooth. 11. Serve hot or room temperature as a dipping sauce with turkey meatballs.

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Prep time: 10 minutes Cook time: 25 minutes

½ cup rolled oats For Dipping Sauce: 1 tsp olive oil 2 Tbsp chopped onion 2 cups frozen butternut squash, thawed ½ tsp salt ¼ cup plain Greek yogurt 6 Tbsp chicken broth

RECIPIES

Roasted Cauliflower Roasted Cauliflower Soup Soup

Ingredients IngredIents

4 pears, thinly sliced 2 Tbsp olive oil, divided 1 head cauliflower 2 cup blueberries Pinch of salt and pepper 1 Tbsp½pure maple syrup onion, chopped 2 tsp lemon juicepeeled and chopped 2 potatoes, cups chicken 2 Tbsp2whole wheatbroth flour ¼ tsp salt 2 Tbsp¼ground flaxseeds tsp dried thyme

½ cup old fashioned oats ½ cup almonds, thinly chopped ¼ cup brown sugar ½ tsp cinnamon ¼ cup cold unsalted butter, cut into small cubes

2 cups milk (or plan non-dairy milk of choice) ¼ cup parmesan cheese HeatFresh ovenparsley to 425°F.

Directions

Prep time: 5 minutes Cook time: 30 minutes

1. 2. Spread cauliflower onto baking sheet. Drizzle with 1 Tbsp olive oil, and small amount of salt and pepper. Roast cauliflower for 20 minutes. 3. While cauliflower is roasting, heat remaining 1 Tbsp olive oil over www.CancerSupportCommunity.org medium heat. Add onion and cook until translucent, around 6 minutes. 4. Add potato, chicken broth, salt, and thyme. Bring to a boil and then simmer until potato cooked, 10-15 minutes. 5. Add cauliflower and milk, bring back to a boil. 6. Puree with immersion blender or stand up blender until it reaches desired consistency. 7. Top with parsley and parmesan cheese.

Sweet Sweet Potato ChiliPotato Chili Ingredients IngredIents

1 Tbsp olive oiloil 1 Tbsp olive ½ onion, chopped ½ onion, chopped lb lean ground turkey 1 lb11lean ground turkey Tbsp chili powder 1 Tbsp chilicumin powder 1 ½ tsp ½ tsp garlic 1 ½ tsp cuminpowder ½ tsp salt powder ½ tsp garlic

½ tsp salt 3 sweet potatoes, diced 3 cups vegetable or chicken broth 1 can kidney beans, drained

3 sweet potatoes, diced 3 cups vegetable or chicken broth 1 can kidney beans, drained

Directions

Prep time: 5 minutes Cook time: 20 minutes

1. Heat olive oil over medium heat in heavy bottomed pot. 2. Add onions to pan and cook for 5 minutes, until translucent. 3. Add ground turkey, spices, and salt and cook in the pot until turkey is nowww.CancerSupportCommunity.org longer pink. 4. Remove from pot and set aside. 5. Add sweet potatoes and broth to the pot. Bring to a boil, reduce to a simmer and cook for 10 minutes or until soft. 6. Once sweet potatoes are soft, puree sweet potatoes with immersion blender or stand up blender until desired consistency. 7. Place pot back over medium heat, add turkey mixture and beans and mix into chili. If too thick, add 1 cup of water or broth to thin the chili. CANCERTRANSITIONS: Moving Beyond Treatment

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EATING WELL and Strata Spinach Strata Swiss andSwiss Spinach

Ingredients IngredIents

1 Tbsp1 olive oil oil Tbsp olive 1 onion, diced 1 onion, diced 1 garlic clove, minced 10 clove, oz frozen spinach, thawed 1 garlic minced and drained 10 oz 8frozen spinach, slices whole wheat thawed crusty bread, cubed and drained 2 ½ cups milk 1 tsp salt wheat crusty 8 slices whole ½ tsp black pepper bread,9 eggs cubed

2 ½ cups milk 1 tsp salt ½ tsp black pepper 9 eggs ¾ cup grated Swiss cheese ¼ cup grated Parmesan cheese

¾ cup grated Swiss cheese ¼ cup grated Parmesan cheese

Directions

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Prep time: 20 minutes Cook time: 45 minutes

1. 2. 3. 4. 5. 6. 7. 8. 9.

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The day before serving: Grease a ceramic dish with non-stick spray. Heat olive oil in skillet over medium heat. Add onion and cook for 5 minutes, until translucent. Add garlic and sauté for 1 minute. Add spinach and cook for 2-3 minutes. Set aside. In ceramic baking dish, add bread cubes and spinach. Mix until combined. In a separate bowl, combine milk, salt, pepper, eggs, and cheese. Pour egg mixture over bread and spinach. Cover and place in the refrigerator overnight. The next morning: Preheat the oven to 375°F. Remove strata from refrigerator while oven is preheating. Uncover and bake in oven for 45-50 minutes, until top is slightly browned.

CANCERTRANSITIONS: Immunotherapy Workbook

Staying Active Movement is a powerful tool. It can help you take control of your physical and mental health. In this part of the session, you will learn about how exercise can affect your health after treatment. You will develop a personal plan for physical activity. As you start to follow it, you may begin to notice a change in mindset. You may feel less like a person with cancer… and more ready to live life to the fullest.

Find Your Motivation As you plan to make changes, think about what motivates you. Make a list of what might help you get moving. Examples might include spending time with friends, being outside, fun music, or an interesting podcast or audiobook.

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Workbook Exercise Three things that might help me get or keep moving:

1 2 3

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How Exercise May Help with Cancer There are many benefits to exercising. Being active can give you more energy and improve your quality of life. You can build muscle and improve your balance. It may even help you manage some side effects of treatment. Regular exercise can help protect against certain cancers, including breast, colon, endometrial (uterine), and possibly lung cancer. Studies have found that people who have had breast, colon, or prostate cancer but who engage in exercise live longer. Being active can also help our mood. A Harvard University study found that people who replace sitting with moving were less likely to be depressed. Physical activity has also been shown to reduce fatigue. Being physically active does not have to be hard or strenuous to count as exercise. It is important to develop an exercise program that is right for you. A customized program takes into account how you feel, your past experience with exercise, and your body’s needs and limitations. According to the American Society of Clinical Oncology, exercise that is tailored to your level of energy and ability may:

• Keep or improve your physical abilities, including muscle strength • Improve balance and lower your risk of falls or broken bones • Lower risk of heart disease and diabetes • Build bone strength, which can lower the risk of osteoporosis

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• Improve blood flow and lower risk of blood clots • Lower risk of anxiety and depression • Reduce impact from side effects such as nausea, fatigue, neuropathy, and lymphedema • Aid sleep • Reduce ‘chemo-brain and improve learning and thinking • Aid with weight control, which can reduce your risk of other cancers

Talking to Your Doctor Your doctor can help you develop a safe and sensible exercise program for this time in your life. This session will guide you through the basics of starting and sticking with an exercise program. We want you to leave here excited about what moving more can do for you. There is one important thing you need to do first: Talk to your doctor.

For more information on the benefits of exercise for cancer survivors, visit these websites: • https://www.cancer.org/treatment/survivorship-during-and-aftertreatment/staying-active/physical-activity-and-the-cancer-patient.html) • (https://www.cancer.gov/about-cancer/causes-prevention/risk/obesity/ physical-activity-fact-sheet)

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As you start to be more active, you will learn to pay attention to your body. You will notice if you have any pain. If you do, discuss it with your doctor. Physical activity is an integral part of the Cancer Transitions strategy, and you want to approach it in a healthy way. The goal is to learn how to listen to your body. Every survivor’s physical and emotional health is different. It’s important to find the level of activity that is right for you.

How to Customize Physical Activity Customizing a physical activity means changing an activity or movement to fit how you feel on a given day. This personal approach can accommodate any physical limitations you may have. During treatment, exercise in any form was likely very challenging. Immediately following your final treatment, very few people feel like vigorous exercise. But a few months or years down the road, you will be able to exercise at a higher level, keeping in mind you might need to modify the exercise regimen. For example, at the very end of treatment, exercise can mean walking very slowly around a room. A month later, you might have the energy to walk a block. A year later, you might walk even farther or faster. Activities such as cleaning or gardening also count as being active. When your body is recovering, you may feel tired or worn out more easily. Try not to get discouraged. Any physical effort is good for you, no matter how small.

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This program will help you “read” how you feel at any given moment, and then customize your chosen exercise to match your feeling. For example:

• If you feel sick, exercise may help decrease nausea. Even so, you should focus on gentle, slow, and brief exercise • If you are fatigued or extremely tired, exercise may give you energy (if it is gentle, slow, and brief). You can always do more on a day when you are not so tired. • If you are not sleeping well at night, exercise during the day may help you sleep better. The goal of this session is to help you find a way to exercise that feels good and safe, to experience health benefits.

Step I: Customize Here is the ultimate Movement Motto that allows you to exercise no matter how you feel:

• If it feels good, do it! • If it feels bad, customize it! You can replace the word “good” with safe or comfortable, and the word “bad” with unsafe or uncomfortable: If it feels safe, do it. If it feels unsafe, customize it. Keep in mind, working out muscle tension will often feel good, while the pain will feel bad. Muscle tension will feel like “safe” soreness, while the pain will feel like “unsafe” soreness. Working out the tension should not feel painful.

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What works for you? Low fitness: Walk at a comfortable pace for 10 minutes around a mall or your neighborhood. Take a buddy and make sure you can talk as you walk. Intermediate fitness: Walk at a brisk pace, increasing walking time by 5 minutes every day or two. Use music with a good beat in a personal music player to help you increase your speed and time. High fitness: Add weights, power-walk, jog or run. Work on increasing distance, time, and speed. Your pedometer or fitness tracker will work in every situation to measure steps or distance.

Step II: Keep Moving The goal is to find a way to do some version of the movement, rather than no movement at all. The old saying is, “Motion is medicine.” Instead of saying “I can’t,” learn to say, “I can figure out how to customize that activity, so it feels good to me.” Keep trying little changes until you find the action that is right for your body. Remind yourself that it does not matter what others are doing or what you used to do in the past. Your muscles, level of fatigue, nausea, and bone strength may be different now. Avoid comparing your level of exercise to anyone else, including your past self. Anything you do to improve your current physical health will be valuable.

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Step III: Energy: Aim for Gain vs. Drain Customize your physical activity to match your current energy level. Determine the amount of time and effort you can put into exercise each day based on how you feel that day. Combine this assessment with doing the movement in a way that feels good. Try to keep yourself moving during your exercise time. Adjust the movements as you go along. Make sure that they feel good and safe to you. The goal is to exercise within your current level of energy and physical ability.

The FITT Approach Many exercise specialists recommend a FITT approach to exercise. It can be applied to any kind of activity and customized to your needs. Try to plan your activity for the week taking into account: Frequency – How many times/week will you do the exercise? Intensity – How hard of a workout are you going for (light, moderate, or intense)? Time – How many minutes will you do the activity in one session? Type – What is the activity (e.g., walking, yoga, swimming, etc.)?

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“0–10” TIP Decide for yourself what level of energy you have. Use a scale from 0 to 10, with 0 being absolutely no energy and 10 being totally energetic. Choose the number you want as your target exercise level. The purpose is to work with your body, not against it. Figure out how you feel today. You want to exercise at your capacity, not below it or above it. Remember: Exercise will help you gain energy, not drain energy.

Step IV: Talk Test

While you exercise, take a moment to notice how hard you are working. If you can talk, but not sing, you are doing a moderateintensity activity. If you can’t say more than a few words, you are doing an intense workout. Checking in with yourself in this way can help ensure that you are safely meeting your exercise goals. Talk with your doctor about what an appropriate workout is for you, and what you can safely work up to.

Step V: Deep Breathing: LOW and SLOW • Learn to breathe low in your belly, at a slow pace. • Deep breathing relaxes tension • Oxygen allows muscles to work • Deep breathing energizes you • The goal is to feel good, be safe, and gain energy! • Review Your Workout After completing your workout, pay attention to how you feel. If you feel mentally tired, emotionally upset, or physically exhausted, you may have attempted to do too much. If you just feel bored or uninspired, you may not have done enough. Aim to feel better at the end than when you started. That’s part of the magic of exercise. Exercise can make you feel better, even if you felt nauseated, tired, or sad before you did it. You can control how you feel after by adapting your movement to match how your body is doing on any given day.

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How to Maintain a Physical Activity or Exercise Plan You now know the benefits of regular movement. You now know how it might help with your survivorship. You now know the principles of customized movement—how to adapt the activity to how you feel today and how you will feel tomorrow. Getting started is only half of the formula. Now focus on how to keep moving. Turn what you started into a habit for better health and energy over time. Three simple steps have helped many people stick with healthy lifestyle changes, whether it is eating better, moving more, or quitting smoking:

• Set realistic goals • Reward yourself • Establish a support system • Example of an Exercise Plan

An exercise plan might start with walking around a room once then more than once. You may slowly work your way up to a walk to the corner, and ultimately around the block. You can also use counts and time as goals. Maybe you start with a minute of arm lifts then work up to five minutes. An ultimate goal could be five minutes holding a can of food in each hand.

Set Realistic Goals As you begin to exercise, set goals that are right for you. Finding the sweet spot of the “right amount” of exercise on a given day can be challenging. Talk with your health care team about your goals. Doing too much can be frustrating and use up more of your energy than it creates. Doing too little can make exercise boring and not give you much energy either. How do you

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avoid both extremes and make sure you get “gain” rather than “drain”? Use the 0 to 10 tips to understand your energy level every day and set your goals accordingly: Not too much, not too little, but just right. Like so much else, this becomes easier with practice.

Reward Yourself Use rewards as a training tool. Think about what motivates you. Find something that feels like a reward to you. Exercise and earn that reward! A reward can be anything that feels like a treat to you: a call to a friend, a book, an extra 5 minutes in bed in the morning, or something special like a night out or an evening to yourself if it is possible. Chart your success so you can reward yourself over time. Vary your rewards so you stay interested and motivated to meet your goals! Consider small rewards for a day’s effort, leading up to a bigger reward for continued effort. You might earn the bigger reward after a certain number of days or workouts, or after achieving a workout-specific goal like walking a mile. Note: Some experts counsel people who are trying to lose weight not to use food as a reward. However, knowing that a small edible treat waits for you can be just the push you need to start moving. The important word here is “small.” Keep in mind, a reward should never be food that a doctor has told you to avoid for health reasons. THE EXERCISE HABIT: HELPFUL TOOLS: Take a look at the sample Exercise Log provided to help you develop and maintain the exercise habit. Using this log regularly will help you think through your exercise goals and document your results. If you are using the buddy system, you and your support partner(s) can work on these together (see p. 14)!

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Establish a Support System

Everyone’s Human: What to Do If You Lose Motivation or Must Stop Exercising

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When you are establishing a support system, pick a buddy who has similar lifestyle goals to ensure you keep moving. You may have one buddy who’s supporting you through every week of the Cancer Transitions program, or perhaps you have one buddy for healthy eating and another for exercise. Maybe having encouragement at home or work is all the support you need. If you have a buddy, try to identify some rewards that family, friends, or your “buddy” can share with you.

What happens if you skip a few days? Even Olympic athletes take a break, by necessity or choice. You may have to let some ailments run their course or keep your feet up while an injury heals. Maybe you were traveling, or life became overwhelming for a while. If you have stopped exercising for any reason, try to stay positive. Focus instead on why you started exercising. Remember the gains you made and recommit yourself to an exercise plan. Go back to the basics. Set goals that are suitable to where you are now and work back to where you were. Every day that you exercise is a day that you do something good for yourself. If you had to stop, it is helpful to understand what got you off track—then look forward, not back, and take one day at a time. Perhaps the activities or rewards you chose before were not as fun or motivating as expected, or the goals were not realistic, and you got discouraged. Revisit your exercise plan to make sure that you are working toward goals you can meet and sustain. Remember to reward yourself and record your results in an exercise log. Stick with it and begin to see a healthy habit form again.

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Workbook Exercise 1. What obstacles do you face when trying to commit to a regular exercise plan?

2. What are possible ways to overcome these barriers?

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You may already have some ideas for physical activity. Maybe you are already doing them. Physical activity can mean many things. It can range from walking across the room or going for a run, and everything in between. The Internet offers a world of ideas for exercise. The Cancer Support Community is also a good resource. Some affiliates even offer exercise classes or have videos on Facebook. Check with your doctor when you make your exercise plan. Get your physician’s permission before you do any type of physical activity. Your doctor can tell you when to start, what types of exercise are safe for you, for how long, and if there are exercises or activities to avoid.

Build-in Rest and Relaxation As you focus on a healthier lifestyle, be sure to build rest and relaxation into your schedule. One of the most important things you can do for your health is get enough sleep. This is not an easy goal to achieve for many of us. We will discuss sleep more in the next session. Even beyond sleep, look for ways to rest and relax. Learn to pay attention to your body. This may mean saying no sometimes to a friend or a family member. It can be hard to disappoint people, but you need to take care of yourself too. As you start to live a healthier life, you may find that you have more energy for the people and activities you enjoy.

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Get Inspired

Weekly Wellness Assignments 1. Based on your current diet, will you have to make many changes to reach the nutrition goals discussed in this session? Use the Food Diary to track a few days of eating to get a better sense of your dietary patterns. (See p. 15 for a sample.) 2. Do an inventory of the food you have in your home. Make a list of foods to keep and foods to get rid of. This step will start you on the right track. 3. Action Plan—Write your action plan goals for the week in your log. Include a substantial dietary goal (like eating more fruits and vegetables or more fiber). 4. Exercise Log—Consider your customized exercise plan. Set goals for the week and chart your activity in the Exercise Log. Note any problems or challenges you have. You will be asked to complete the log each week of the Cancer Transitions program and hand it in to our specialist. Remember to use your fitness tracker or pedometer! 5. Action Plan—Consider your weekly goals and chart them in the Action Plan Log provided. 6. In the next session, we will cover medical management issues after treatment. Think about some issues that you have been dealing with since you finished treatment. Write down some questions you might have for our presenter, and we’ll try to address some of these issues next week.

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Session

Medical Management Beyond Cancer: What You Need to Know

Introduction Cancer Survivors and Health Communicating with Your Health Care Team The Purpose of Follow-Up Care Make a Plan for Follow-Up Care Organizing Your Medical Records Short- and Long-Term Health Risks After Cancer Treatment Short-and Long-Term Health Risks After Immunotherapy Treatment Late Effects: Long-Term Health Concerns of Survivors

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FOUR CONTENTS

Late Effects: Long-Term Health Concerns of Immunotherapy Treatment Taking Care of Yourself Looking Forward Weekly Wellness Assignments CANCERTRANSITIONS: Moving Beyond Treatment

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“I am not afraid to ask difficult questions.”

Introduction In the last two sessions, we talked about what you can do to strengthen your body and mind. You’ve probably already started to make some changes, and possibly even noticed some results. You’ve learned how to take a more active role in caring for yourself. You may have started to feel more control over your life and body. In this session, we focus on another piece of caring for yourself – dealing with the lingering symptoms or side effects from immunotherapy treatment, even the fears that cancer might return, and how to prioritize your overall health as you age. Immunotherapy is one of the great breakthroughs in the fight against cancer. The science behind immunotherapy is fascinating and complex. Medical scientists have devised multiple ways of using the immune system to fight cancer.

CAR T-Cell Therapy One common immunotherapy approach falls under the category of cell therapy. Medical scientists take immune system cells (T-cells) from the patient’s body and tweak them in the lab so the T-cells can better recognize cancer cells, which are very good at hiding from the body’s immune system. After culturing enough of the T-cells in the lab, doctors will then reinject these altered white blood cells into the original patient.

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The altered T-cells have been fitted with a special protein on their cell surface, called a chimeric antigen receptor. Think of it like a light plug or computer port. The chimeric antigen receptors only fit with the antigens (specific molecules that normally initiate the production of antibodies in the bloodstream) on the surface of the cancer cells, so when the CAR T cell connects with a cancer cell, it destroys it. CAR T cell therapy is now approved in certain leukemias and lymphomas and being tested in several other cancer types. For more information on CAR T, see our CAR T Immunotherapy booklet.

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Leveraging the Power of Monoclonal Antibodies Another version of immunotherapy involves creating antibodies (known as monoclonal antibodies) in the lab and injecting them in the patient so they will locate the cancer cells. Monoclonal antibodies mimic the function of natural antibodies in the bloodstream, except the monoclonal antibodies are laboratory-produced molecules that have been specifically created to track down cancer cells and destroy them. The monoclonal antibodies bind with specific antigens that are more numerous on the cell surface of cancer cells. . Fortunately, medical scientists have developed many different kinds of monoclonal antibodies to use in cancer therapy against different types of cancer.

Boosting the Immune System with Cytokines Cytokines are substances that are secreted by the immune system to stimulate the growth and activity of immune system cells. One form of immunotherapy involves injecting the patient with cytokines to speed up the growth of T cells and activate other immune cells, boosting the immune system’s ability to aggressively fight cancer and stop its growth. Cytokine therapy has shown some success in treating advanced melanomas and kidney cancers.

Cancer Vaccines We get vaccines to fight off all sorts of diseases, from childhood diseases to COVID-19. Medical scientists have been studying the possibility of using a vaccination strategy against cancer for many decades. The cancer vaccines are designed to “teach” T cells to respond to specific cancer antigens. Currently, there is only one approved cancer vaccine in use. It is used to treat advanced prostate cancer. It is made from the patient’s white blood cells. These cells are 154

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sent to a lab where their ability to recognize and fight prostate cancer cells is boosted. The cells are then re-infused into the patient.

The Side Effects of Immunotherapy The side effects of Immunotherapy are generally different from the side effects of other cancer treatments, like chemotherapy or radiation therapy. Some immunotherapy side effects may occur right away. Others may not occur for days, weeks, or months, or even years after treatment. We tend to think of immunotherapy as “natural”, since it is deploying our body’s immune system. However, immunotherapy can still have side effects. In many cases, the side effects are not severe and may be short-lived and stop when treatment stops, or the side effects could be easy to manage. Less often, the side effects of immunotherapy can be very severe and even life-threatening. Unlike surgery or radiation therapy, immunotherapy is less targeted, so the side effects may affect your whole body.

Common side effects • Flu-like symptoms (fever, chills, headache, nausea, cough, loss of appetite) • Fatigue (some people get extreme fatigue) • Rashes, redness, or itching • Pain or soreness • Muscle or joint pain • Infections

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pain, diarrhea) • Problems with the thyroid, liver, kidneys, heart, or other glands or organs • Lung problems (cough, shortness of breath) Other serious autoimmune side effects (such as pituitary disorders or diabetes) can also occur. Sometimes the side effects do not occur right after treatment. The problems show up several months later. Because you have likely started some type of immunotherapy treatment prior to joining the Cancer Transitions group, your physician has probably explained some of the treatment regimen and possible side effects to treatment already. The types of side effects a person receiving immunotherapy experiences will depend on several factors, including the type of immunotherapy, the dose, how healthy the person was before treatment, the type of cancer, and how advanced the cancer is. For patients receiving immunotherapy, the most common side effects include skin reactions at the site of the injection, such as pain at the injection site, swelling, and soreness. Some immunotherapy drugs may cause severe or even fatal allergic reactions, though this is rare. If you experience any unexpected side effects from immunotherapy it is important to communicate with your medical team as soon as possible. Most side effects can be managed if treated early. Remember, doctors and nurses cannot know for sure when or if side effects will occur or how serious they will be. You will have the best understanding about how you feel, so communicate regularly and openly with your care team during follow up appointments. Because immunotherapy is still in its infancy as a form of medical

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treatment, medical experts are still studying the possible long-term side effects of immunotherapy. You probably learned a lot about health care and medicine when you were in active treatment. Being a cancer survivor who is not in active treatment can raise new questions. You may feel some uncertainty around the next steps and when to “say something” if you don’t feel quite right. This program cannot provide all the answers, but it can help to clarify what comes next. We will discuss questions to ask and things to pay attention to. You will also receive the tools you need to work with your doctor more productively in this new phase of survivorship. Knowing what to expect can help you and your family make plans, lifestyle changes, and important decisions.

Cancer Survivors and Health Cancer survivors often have many health issues to pay attention to, including: • Health conditions that they had before cancer, such as high blood pressure or asthma • Health goals that were set aside during cancer treatment, like trying to have children or achieve a healthy weight • New health concerns resulting from cancer or its treatment, like lymphedema • Health changes related to normal aging • Mental health or addiction issues may make it hard to focus on other health needs In this session, we look at medical management. We explore how CANCERTRANSITIONS: Moving Beyond Treatment

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to take an active role in your health care. The Cancer Transitions approach is founded on these two beliefs: Being a partner with your health care team will help you gain more control over your situation. Understanding what to expect after cancer treatment will help you and your family plan for follow-up care, make healthy lifestyle changes, and stay hopeful.

Communicating with Your Health Care Team When you have had cancer, one of the most important things you can do is continue to talk with your doctors, nurses, patient navigators, and social workers. Do not hesitate to ask them any questions you have. Being up front about how you feel—and what you do or do not understand—helps both you and your doctor take care of your health. It is your body, your health, and your life, and you need to know what’s going on with all three. You have the right to understand medical terms and treatment options. You have the right to make choices, whether the doctor agrees with those choices or not. If your doctor does not treat you with respect, shows impatience with your questions, or does not consider your opinions, you may want to look for another doctor. If this is not possible, try to find another member of your health care team who is easier to talk with. This person may be a nurse, social worker, or patient care coordinator. They may be able to get answers to your questions or help improve communication with your doctor. Cancer survivors of all backgrounds can have a hard time communicating with their health care team. If anything on the list

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below sounds familiar, the problem may be communication: • After many of your office visits, you have questions that you didn’t ask or that weren’t answered very well. • It seems as if you never have enough time during office visits to say what is on your mind. • Members of your health care team often seem rushed, distracted, or uninterested in something you want to discuss. • Sometimes you don’t know what questions to ask your medical team during follow up sessions. The Survivorship Assessment below covers important topics that many cancer survivors deal with, and it may be good to review the Assessment with your care team. One of the best ways to improve communication with your health care team is to prepare for your visits so that you can make the most of your time. Write down the questions you want to ask. They may include questions about:

• A symptom or side effect you are experiencing • The schedule for future screenings • Signs and symptoms to watch for • Safe approaches to physical activity • Healthy foods • Sexual health or fertility • Other health risks or conditions

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Post-Treatment Survivorship Questions Concerns Survey Question – Please speak with your health care team for every question you respond with a “YES”

Cardiac Toxicity Do you have shortness of breath or chest pain after physical activities (eg, climbing stairs) or exercise? Do you have shortness of breath when lying flat, wake up a night needing to get air, or have persistent leg swelling?

Distress, Anxiety and or Depression Do you have difficulties with multitasking or paying attention? Do you have difficulties with remembering things? Does your thinking seem slow?

Cognitive Function In the past two weeks, have you been bothered more than half the days by little interest or pleasure in doing things? In the past two weeks, have you been bothered more than half the days by feeling down, depressed, or hopeless? Has stress, worry, or being nervous, tense, or irritable interfered with your life?

Fatigue Do you feel persistent fatigue despite a good night’s sleep? Does fatigue interfere with your usual activities? How would you rate your fatigue on a scale of 0 (none) to 10 (extreme)?

Lymphedema Since your cancer treatment, have you had any swelling, fatigue, heaviness, or fullness on the same side as your treatment that has not gone away? 160

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Hormone-Related Symptoms Have you been bothered by hot flashes/night sweats? Have you been bothered by other hormone-related symptoms (such as, vaginal dryness, incontinence)?

Pain Are you having any pain? How would you rate your pain on a scale of 0 (none) to 10 (extreme)?

Sexual Function Do you have any concerns regarding your sexual function, activity, relationships, or sex life?

Sleep Are you experiencing excessive sleepiness? Do you engage in regular physical activity or exercise?

Healthy Lifestyle Do you engage in regular physical activity or exercise? Do you eat at least 2 ½ cups of fruits and or vegetables each day? Do you have concerns about your weight? Do you take vitamins or other supplements?

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Workbook Exercise 1. Do you write down questions before you go to the doctorso you remember the things you want to ask?

2. How do you keep track of what the doctor tells you?

3. Have you ever had to switch doctors because of a communication problem?

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“The transition from active treatment to post-treatment care is critical to long-term health.” —IOM report, From Cancer Patient to Cancer Survivor: Lost in Translation

Health Insurance Now is a good time to check in with your health insurance. Start by calling your insurance company. Explain that you have had cancer and will now need follow-up care. Ask what they will cover. Ask if the care needs to be provided by a certain kind of doctor or health professional to be covered. Sometimes people are tempted to stop paying for health insurance after active treatment ends. This is a bad idea. Maintaining health insurance is important to your overall health. You may also experience ongoing or late effects of cancer, so routine care is even more important. Having health insurance will help you get the care you need to stay healthy. If you have questions about your insurance and are not sure where to turn, talk with the program leader. You can also call the Cancer Support Community’s Helpline at 1-888-793-9355. Learn more about health insurance and how to get insurance through the state health insurance marketplaces.

The Purpose of Follow-up Care The transition away from treatment marks the start of another stage of life and your medical journey. From here, follow-up care takes center stage. This new phase involves regular medical check-ups on a schedule that you and your doctor create.

During follow-up visits, your doctor will look at many important things: The effectiveness of your treatment (whether the cancer has returned or spread)

Your recovery from treatment (managing shortterm side effects)

Signs of health conditions that can appear years later (late effects)

Other health issues that must be managed, such as diabetes, heart disease, or asthma.

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Why is Follow-Up Care Important? Follow-up care is the health care you receive related to cancer after treatment or a phase of treatment ends. Follow-up care has many purposes. Your doctors will look for evidence of a cancer recurrence or growth of new cancer. Your physician will ask about and treat the side effects of the earlier cancer treatment. He or she will also check for and treat other health care conditions. The guidelines around follow-up care for cancer can vary. Your doctor’s recommendation will be based on the type of cancer you had, its stage, what kind of treatment you had, and your age and general health. For example, someone with stage 0 breast cancer who had a double mastectomy would likely only need to be followed for 6 to 12 months. Someone with locally advanced breast cancer (perhaps stage 3c) would likely be followed by an oncologist for nearly a decade. It is very important to go to every follow-up visit. The frequency of the visits may vary based on the type of cancer and treatment. The schedule of visits is one part of your follow-up care plan.

Make a Plan for Follow-Up Care You may already have a plan for follow-up care. If so, that’s great! Unfortunately, many excellent doctors do not approach follow-up care using a concrete follow-up plan, which is sometimes called a surveillance plan. If you left your doctor’s office knowing the date of your next appointment but not understanding the big picture, you are not alone. It is important to make a follow-up care plan with the doctor who treated the cancer. A follow-up care plan is sometimes called a survivorship care plan. It includes detailed information on the type and subtype of cancer you had, where it was located, and how it was treated. The plan should include the names of drugs, doses, and schedule of treatments.

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The plan should include the names and addresses of your doctors. It may also include related risk factors, like biomarker or genetic information. It is designed to address key questions such as: Who handles your follow-up care? Which doctor do you call or visit and for what reasons? During active treatment, you probably had two or three doctors at any time. Now, it might be confusing to know whom to call and when. Let your doctors know that you want to understand their roles and take control of your health care. How do you know when to call the doctor? When you are in active treatment, it is advisable to let your doctor know about any changes you notice. You may now wonder if this advice still applies. If not, how do you know when to reach out? What concerns or symptoms should prompt a phone call or visit your health provider? The answer to this question will depend on your health history and other factors. Relying on advice from an Internet search to determine if you need to contact your doctor is probably not the best course of action. This is why developing and understanding the follow-up care plan is so important. How often and for how many years do you need to see the doctor who treated your cancer? You might already know this. Even if you do, it’s a good idea to include this information in a follow-up plan. Having all the important information in one place will be very helpful. If you do not already have a follow-up plan, start by having a conversation with your doctor. Strive to: • Complete a survivorship care or life care plan, including a surveillance plan that includes follow-up tests or procedures. • Walk away knowing the schedule of regular visits. • Clarify which doctor or specialist to see when.

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• Understand the signs or changes that warrant a call to a doctor. • Get advice on what to do if the care you need is not available nearby. The American Society of Clinical Oncology (www.cancer.net) has developed survivorship care plans by cancer type. You can download the plan for free from their website. Try to fill it out with your doctor before you end treatment. These plans include scheduling follow-up appointments. OncoLink also offers an easy way to create an OncoLife survivorship plan online. Some cancer centers also have their own survivorship care plans. If your doctor does not mention a preferred format for a survivorship care plan, be sure to ask if he or she has a preferred version.. Tips for talking to your oncologist or cancer doctor about follow-up care: • Prepare a list of questions beforehand. Start with the points mentioned above. • Tell your doctor in advance that you would like to have a survivorship plan. Ask if he or she has a template to use. If your doctor does not, , refer to the resources here to find one. Email the link or document to your doctor in advance or bring it to the appointment. • Ask about the role of your primary care doctor vs. the role of the cancer doctor. Which one do you call when? • Make a list of signs or symptoms that need follow-up. Sometimes doctors can be vague. Ask specific questions. For example, how many days should you go before reporting a symptom? How severe should it be?

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Accept that your doctor may not have all the answers. If your doctor is not answering your questions, it may be because he or she does not know the answers or the answer is not clear cut. Ask your physician to look into the issue for you, or ask if there is someone else you can talk with. Ask for the names and contact information of other resources. Include these additional resources in the survivorship care plan. Other resources might be doctors, health care professionals, or cancer-related organizations. Look into insurance before you talk with your doctor. Ask what type of care is covered. Some insurance companies have their own guidelines for follow-up care which doctors you see and how many visits will be covered. A hospital social worker or financial counselor might be able to help too.

Follow-up visits: What to Expect Each follow-up visit may involve some of the following:

• A review of your medical history • A physical examination • Blood tests • Endoscopic exam of internal organs with a thin, lighted tube • Occasionally, CT scans, MRIs, or other scans may be ordered Routine cancer screenings are important as well. Ask your doctor for advice on when to have:

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• Prostate exams • Lung cancer screenings if you are high risk based on smoking or cancer history Before your follow-up visit, be sure to write down anything that you are concerned about --- pain, other symptoms, depression or anxiety, or changes in your eating or sleep patterns. It is also helpful to keep a health diary. Have a dedicated place, either on paper or on a computer or tablet, where you keep track of your health. Make note of any symptoms and side effects. Record what you notice, when it happens, and how long it lasts. If you have pain, use a Pain Rating Scale (discussed later in the session) to keep track of the severity of the pain. Refer to the body chart in the Cancer Transitions notebook to p document where you are having pain or other symptoms.

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Here are some tips for using the Follow-up Visit Tool before your follow-up visit: • Read over your Health Diary and review any concern you may have • Write your questions/note your concerns in your Follow-up Visit Tool • Take this Follow-up Visit Tool to your doctor’s appointments to track the information that is shared • Write down additional notes and questions during each doctor’s visit

Improve Communication During your Follow-Up Visits How many of us have left a doctor’s appointment wondering what was just said? There are a few things you can do to make sure you leave the doctor with a clear understanding of what was discussed and what you need to do. Use the Follow-up Visit Tool • Bring a friend or family member with you to help take notes. You can ask the doctor whether you can record the conversation to help you remember

Sample questions for follow-up visits: Follow-up care (Cancer.Net) What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

What long-term side effects or late effects are possible based on the cancer treatment I received?

What follow-up tests will I need? How often will I need them?

How do I get a treatment summary and survivorship care plan to keep in my personal records? What survivorship support services are available to me? To my family? (Source: https://www.cancer.net/ navigating-cancer-care/ diagnosing-cancer/ questions-ask-your health-care-team (Source: https://www. cancer.net/navigatingcancer-care/diagnosingcancer/questions-askyour-health-care-team

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information, but they may say no. • If your doctor prescribes new medicines or a different treatment plan, write this information down. Once your doctor is done, read your notes back to the doctor or nurse. This will help you catch any information you may have missed or didn’t understand. • Always ask questions if you have them. • If you cannot do what the doctor is asking in the treatment plan, ask for other options. • Write down any directions the doctor or nurse tells you about follow-up tests you may need. • Write down the time and date of your next appointment.

Organizing Your Medical Records As you plan for follow-up care, take time to get organized. Spend some time gathering and organizing your medical records. Keeping track of your medical records allows you to share accurate information with all your health care providers. There are different ways to keep track of your medical records. Today, many of us have an electronic medical record, which we can view through a website or app. You may already have an app, such as MyChart, on your phone. You may have used it to schedule appointments, message your doctor, or look up

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test results. If you haven’t already, take a moment to get to know the app. Look through the tabs to see if you can find key information such as: • A description of the cancer you had and how it was diagnosed… its type, subtype, biomarkers, tumor size, and location • Treatments you have had. Look for surgeries, drug treatments, and therapies such as radiation. • The names and locations of the doctors who treated the cancer. • Some people who have had cancer also find it helpful to keep paper copies of images or electronic copies of scans. Before you request hard or electronic copies of your scan or other records, be sure to ask whether you will be charged for copies and how much. To take an active role in managing your survivorship: • Ask for and keep copies of all your medical records. • Keep a list of your oncology doctors, medications, and the specific treatments you experienced, with dates. It’s a good idea to keep this information in your wallet or purse so you have it handy, if the information is not available electronically. • Bring the records with you when you go to your follow-up visits.

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• Bring the records when you visit any new medical office (For example, cancer treatment can cause mouth and teeth problems Tell your dentist about your treatment history.). A survivorship care plan can help you keep this information in one place. If you don’t wish to use a survivorship care plan, you might find it helpful to keep all your treatment and follow-up care records in a single binder or notebook.

Short- and Long-Term Health Risks After Cancer Treatment Cancer and cancer treatment can have a lasting impact on your health. You may experience short- and medium-term effects on your health and even have long-term issues. Some conditions may cross categories. These treatment side effects may appear during or soon after treatment and continue for weeks, days or months. Pre-existing health conditions also play a role. Your risk of other conditions may be different now. Different is not necessarily worse, just different. Most long-term cancer survivors enjoy good health and good quality of life. Even so, it is important to take care of your health. This session is about your role in monitoring and taking care of your health. The earlier section in this chapter discussed some of the medically challenging side effects of immunotherapy. 172

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Short- and Medium-Term Effects Can Include: Fatigue (including sleep changes) Lymphedema (swelling) Memory and concentration (cognitive changes)) Neuropathy (nerve damage) Pain Sexual Function (covered in Session 2) Weight gain (covered in Session 3) This is not a complete list but it covers many of the most common problems experienced after cancer treatment. These, along with common emotional concerns such as depression, anxiety, and the fear of recurrence (see Session 2), can require additional support and lead to changes in family life, work life, and social life. For additional information about the short- and medium-term side effects of cancer treatment, consult the chapter on “Ways to Manage Physical Changes” in Facing Forward: Life After Cancer Treatment (p. 15).

Like other forms of cancer treatment, immunotherapy has other side effects that are not medically serious, but they can impact your daily life in important ways. During treatment, your health care team may have checked in with you. They may have asked if you were experiencing certain side effects. When you are not in active treatment, it is more important for you to start these conversations on your own. You may already be in close contact with your team around lingering side effects. If not, this is a good time to reach out if you have anything to report. More on how to manage specific concerns can be found in the following pages. Refer also to the Cancer Support Community’s Managing Side Effects for more information on many of these topics. Talk with your doctor about what you are noticing. If you can, do so early on. As you document information in the follow up plan, include guidance on signs to look for in your follow-up treatment plan so you can refer back to it if or when issues arise.

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“The #1 complaint of cancer survivors is Cancer-Related Fatigue (CRF) which can affect an individual’s relationships, daily activities, and economic state.” —American Journal of Nursing

Fatigue: When No Amount of Rest Is Enough Cancer-related fatigue is a level of tiredness deeper than a simple lack of sleep. For a thorough description, turn to page 16 in Facing Forward: Life After Cancer Treatment. “Bone weary” is how some people describe it. Often fatigue will fade over time. Physical activity and healthy eating can help you regain energy. In some cases, treatment for cancer can cause anemia or low red blood cells. Anemia can cause fatigue. A blood test can show whether you have anemia and the cause of it (such as iron deficiency). Simple changes in what you eat can help relieve this condition. Medicine may help as well. Tips for managing fatigue include: • Plan carefully and take advantage of your best times of the day for errands or work. • Try to go to sleep and wake up at the same times each day. • Make realistic choices about what you can do. This may mean cutting back on, but not cutting out, favorite pastimes. • Find chances to rest. • Adapt normal activities in creative ways.

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• Accept fewer responsibilities or volunteer activities to enable more “free time” for rest. • Ask for help and allow others to help you. Asking others for help can be hard to do. This is especially so for people who have been the doers, comforters, and helpers in their families and communities. You may have trouble giving up this role or doing less. If this is very hard, seek support. If fatigue is a problem in your life, tell your doctor. Use your health diary to keep track of how often you experience fatigue. This will prepare you to answer any questions your doctor may ask during your next follow-up visit. If your doctor or nurse doesn’t ask about fatigue or other symptoms, it is up to you to mention it.

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Workbook Exercise 1. Have you noticed a change in your energy level?

2. When do you notice it most? Is there a pattern?

3. Have you talked with your health care team about it?

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Sleep Changes Sleep problems affect many people with cancer, both during and after treatment. You may find that you get too much or too little sleep. People with hypersomnia sleep 10 hours or more at a time. Insomnia is the inability to get enough sleep to feel rested. Hypersomnia, insomnia, and increased nightmares can affect your quality of life. These sleep changes aggravate other side effects and lessen your ability to deal with everyday activities. If you are experiencing sleep challenges, ask your health care team for a sleep assessment. This might be a form that you fill out to keep track of your sleep habits. A sleep journal might be helpful too. You can find many versions of sleep journals online. Keeping track of your sleep can help you see patterns and know where to begin to improve your sleep. Tips for managing hypersomnia (sleeping more than 10+ hours each day): • Try to get exercise every day, during the morning or early afternoon. • Develop a routine. Go to sleep and wake up at the same time every day. When it is time to get up, get out of bed. • Engage in activities you enjoy that call for your full attention. • Avoid foods that make you sleepy during the day. • If you believe sadness or depression may be contributing to sleeping too much, talk to your health care team about these symptoms. Your physician can help you to create a plan for relief.

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• Work with your doctor to understand if medication side effects or other medical conditions (such as thyroid problems) may be causing drowsiness or fatigue. Tips for managing insomnia (sleeping less than 6 hours each day): • Work with your doctor to address underlying sources of insomnia, such as pain, anxiety, or medicines you take. • Go to sleep and wake up at the same time each day. • Avoid caffeine, alcohol, and tobacco, especially at night. • If you cannot fall asleep, get out of bed and do something quiet and relaxing until you feel tired enough to return to bed. Staying in bed for long periods when feeling frustrated or upset about your sleep issues can make sleep problems worse. • Avoid checking the time throughout the night. This habit can increase stress and make sleep problems worse. Set an alarm for when you need to wake up and cover the clock’s screen. • If you sleep with your phone nearby, put it on do not disturb if you are able.

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• If you are hungry at bedtime, eat a light snack. • If you are able, exercise regularly. Or at the very least, try to move about during the day. • Sleep in a quiet, dark room that is not too hot or cold. • Start a bedtime ritual, such as reading or taking a bath, to signal to your body that it is time for sleep. • Try meditation and focused breathing. These tools can help you relax and suppress thoughts and feelings that keep you awake to the background. • If nothing else works, talk with your health care team about medicine to treat insomnia. Sleep medications are occasionally used short-term if other approaches do not work. Tips for dealing with nightmares: • Talk about the nightmares. Reach out to a trusted family member or friend. • Write in a diary or draw pictures to express the content or themes of the nightmares. • Imagine different endings or storylines to the nightmares.

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Cognitive Changes Cognitive changes are changes to how your brain works. These changes may affect your thinking, memory, focus, or behavior. Some cancers, cancer treatments such as immunotherapy, and drugs can cause these changes. There are also causes that are unrelated to cancer. Cognitive changes can affect your ability to work or complete common tasks. It is very upsetting to realize that your cancer has been successfully treated, but as a result, you have trouble remembering or focusing. Not everyone who has had cancer experiences cognitive changes, but it is important to know what changes to look for. Slight changes in the ability to remember details or concentrate well after chemotherapy are common. This is often referred to as “chemo-brain.” Cognitive changes related to immunotherapy (Sometimes immunotherapy is given alone and sometimes it is given with other treatments such as chemotherapy, which also may cause cognitive changes):

• Difficulty concentrating • Difficulty remembering things that occurred recently • Difficulty completing tasks • Confusion • Inability to think clearly How long these cognitive changes will linger depends on their cause. Acute cognitive changes (delirium) can be caused by certain medicines. The mental changes often improve when you

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stop taking your treatment-related medications (Never stop taking medications without discussing that decision with your physicians.). Some chronic changes (dementia) are not reversible. However, they may be improved if your doctors can pinpoint the exact reason the drugs impacted your ability to think. If you notice changes in your thinking, memory, or emotions, keep a record of it in your Health Diary. Ask your family or friends to watch for changes. Make an appointment to talk to your health care team about these symptoms as soon as possible. Taking notes is even more important for issues related to cognitive changes. When you talk with your health care team, write down the treatment plan in the Follow-up Visit Tool, or ask someone to accompany you to the visit and take responsibility for note taking. Remember, treating the underlying condition often can reduce or eliminate cognitive problems, so give yourself and your doctor time to address the issue.

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Workbook Exercise 1. Have you experienced “chemo-brain” or other cognitive changes? If so, what strategies have you used to deal with your symptoms?

Lymphedema Lymphedema is persistent swelling in a part of the body. It is due to a decreased ability to move fluid in the lymphatic system. Lymph fluid can build up in the tissue anywhere in the body. It is often seen in the arms, legs, and trunk. The lymphatic system is made up of vessels that carry fluid and the lymph nodes that filter the fluid. The lymphatic system plays an important role in immune function. Common signs of lymphedema are:

• Heaviness or fullness in the trunk or limb • Skin that feels tight • Persistent swelling, even if it comes and goes • Clothing or jewelry that does not fit well on one side • Skin that “weeps” • Contact your doctor if you notice these symptoms.

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• Risk Factors for developing lymphedema include: • Lymph node biopsy or dissection • Lumpectomy or mastectomy • Radiation therapy • Taxane-based chemotherapy • Body mass index over 30 • Heavy tobacco use and/or alcohol use • History of diabetes • Post-op complications (seroma formation, extended drain placement, restriction of movement) Strategies to lower your risk of lymphedema include:

• Limit trauma to the affected limb, especially falls and burns • Use the unaffected “good” arm for blood pressures and all needle sticks • Avoid restrictive clothing and jewelry • Maintain good skincare, including hygiene, moisturizers, sunscreen • Avoid skin irritants and bug bites • Avoid extreme temperature changes (avoid hot tubs and saunas) • Establish a safe exercise program • Consider wearing compression bandages or compression sleeves for air travel and physical activity

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Lymphedema can affect anyone with risk factors, but it is more common among survivors of bladder, breast, head and neck, ovarian, penile, and prostate cancers, and melanoma. It can occur at any time, even years after treatment.

Ask About Palliative Care Maintaining your best possible quality of life is an important goal. If you are coping with ongoing symptoms or side effects, ask about palliative or supportive care. This kind of care is provided by a palliative care specialist. This person is a doctor or nurse who focuses on disease symptoms, treatment of side effects, and the emotional needs of patients. Palliative care is appropriate for cancer survivors at all stages, in treatment or not. Palliative care is especially helpful in managing pain. This kind of care is not the same as hospice care. Hospice care is provided at end of life. Palliative care is given at any time of life. Ask your doctor to be referred to a palliative care specialist if you are experiencing symptoms that are difficult to cope with following active treatment. If your doctor does not know of a palliative care specialist in your area, search on your own.

Pain Cancer treatment can cause pain and discomfort. Because cancer can also cause pain, you may feel scared or worried when you notice pain. Both the pain itself and the uncertainty around it can cause distress for cancer survivors who have finished treatment. That’s why relief for pain can include addressing your fears as well.

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Studies show that pain among cancer survivors is not often reported, recognized, or treated well. Pain can keep you from living your life as fully as possible. You do not have to suffer in silence though. In most cases, treatment can help. If you notice new pain or severe pain, it is important to tell your doctor right away. When you talk to your doctor, he or she will ask how often you have pain and how much it hurts. Prepare for these questions by keeping track of your pain using a Pain Rating Scale and document the location of your pain on the body chart in the CT program appendix and your Health Diary. Use your health diary to record when you have pain, how long it lasts, and its severity. Sharing this information with your doctor will help your physician better understand and treat the pain. You can also write down additional information such as: • Where does it hurt? What are the exact places? Does the pain stay there or radiate out? • Did the pain come on suddenly or gradually? Is the pain constant or does it come and go? • How does it affect your life? Does pain interfere with your usual activities such as working, household chores, sleeping, exercise, eating, or spending time with family and friends?

“You do not have to be in pain. And wanting to control pain is not a sign of weakness. It is a way to help you feel better and stay active.”

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Telling your doctor about pain is important for many reasons. Your doctor may be able to find the cause of the pain. Your physician can help manage your pain. By treating pain early, you may prevent more serious conditions like worsened pain or depression caused by chronic pain. When you talk with your doctor about pain, explain specifically how pain is affecting your life. For example, you might want to walk a certain distance or sleep through the night, and the pain is preventing you from exercising or sleeping. Together you can set goals related to controlling pain. Some people avoid seeking pain relief because they are worried about becoming addicted to painkillers. If this concerns you, talk with your doctor about your options. There are many choices for pain relief. Your physician may recommend drugs that are not addictive or approaches that do not involve drugs at all. Relief of pain may include one or more of the following things:

• Prescription or non-prescription drugs • Exercise • Physical or occupational therapy • Complementary medicine such as meditation and acupuncture Write down what you learn about pain control in your Follow-up Visit Tool. If you have any questions about treatments or strategies prescribed to relieve your pain, try to ask these questions before you leave the doctor’s office. If you think of them later, send a message or call your doctor.

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• Surgery or nerve blocks

Safe Use of Pain Medication Some medicines to control pain can become addictive for some people. These medicines fall into a class of drugs called opioids. They can be very effective in controlling pain related to cancer. Talk with your health care team about your pain and the best way to manage it. Most cancer survivors who use pain medication do not become addicted. If you do use opioids for pain control, store them in a safe place and keep track of how many pills you use. If you use drugs to control pain for an extended period, you may develop a tolerance. You may need a higher dose to control your pain. Tolerance is not the same as addiction. Talk with your health care team about your concerns.

No P ain

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0 means you have no pain.

•

1 to 5 means you have mild pain.

•

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Nerve Damage or Neuropathy Nerve damage from treatment—also called neuropathy—can cause odd sensations such as tingling or numbness in your hands, arms, feet, or legs. This type of damage raises your risk for burns and falls. For example, if your sense of touch is impaired, you can scald your skin in the shower without realizing it. If your legs are numb, you are more likely to trip and fall. If nerve damage is a problem for you, there are practical steps you can take to make your home or workplace safer:

• Check water temperature. Temperatures between 70 and 110 are generally considered safe. • Be sure to use gloves and potholders. • Keep rooms, outside paths, and stairs well-lit so you don’t stumble over unseen objects. • Clear walkways and floors. • Use non-skid mats in showers and bathtubs. • Ask your doctor or nurse about other safety precautions you should take to make your home or workplace safer. There are also medicines and other treatments that may help with neuropathy. Talk with your health care team about what you are feeling and how it affects your life. Also, consider ways to modify your lifestyle so that you come in contact with risks less often. This may mean shifting roles at home. For example, you may do less of the cooking. If your work involves touching machines or handling

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objects, talk with your employer about your limits and staying safe. This issue is especially important for people with jobs that involve fine motor movements, heavy equipment, music, or climbing.

Late Effects: Long-Term Health Concerns of Survivors A “late effect” is a side effect of treatment that occurs more than five years after a diagnosis of cancer. The occurrence and types of late effects vary from person to person. As people live longer post-cancer, the detection and treatment of late effects have become a more important part of cancer care. Because immunotherapy is still fairly new, medical expert have not clearly defined the range of late side effects that may occur in immunotherapy patients. Medical studies have documented issues such as joint pain, blurred vision, conjunctivitis, inflammation of the pituitary gland and thyroid issues. https://www.cancer.gov/news-events/cancer-currentsblog/2021/immune-checkpoint-inhibitors-melanoma-longterm-side-effects Talk with your health care team about the possible late effects of the treatments you received. They can tell you what you might experience and the signs to watch for. Some late effects may be unavoidable, but others can be prevented or lessened with routine health monitoring.

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Cancer treatments like immunotherapy are so new they carry risks for late effects we have yet to categorize. There is not enough history to know how people respond many years after taking these new drugs or undergoing new procedures. By staying in contact with your health care team, you will help them learn more and know what to ask about should any unusual late effects arise. Your risk of long-term health effects may be based on:

• The type and stage of cancer you had • The treatment you had • The effectiveness of the treatment • Your overall health after treatment A survivorship plan can help clarify what signs to watch for and which doctor to call if you notice any changes in your health that might be related to your cancer treatment Doctors will watch for changes in the:

• heart • lungs • liver • eyes • joints and bones • mouth, gums, and teeth • endocrine system • reproductive system

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One of the more serious late effects of cancer treatment is that it may raise the risk for secondary cancers. Higher risk does not mean that late effects will happen. You and your doctor can pay attention to changes and monitor your health with the right tests to watch for signs that a secondary cancer is developing. We strongly encourage you to talk about your risk of late effects with the cancer doctors on your health care team. Followup visits provide opportunities for you to raise questions or concerns. Ask what your specific risks are, how your doctor will monitor them, and what you can do to minimize future problems. Some resources with information about the late effects of cancer treatment: • Cancer.Net (American Society of Clinical Oncology)— provides detailed information on survivorship, related health conditions, and follow-up plans after cancer treatment. http://cancer.net/survivorship/long-term-sideeffects- cancer-treatment

• Cancer.org (American Cancer Society)—offers information on the late effects of cancer treatment in young adults (www.cancer.org/cancer/ cancer-in-young-adults/lateeffects.html).

Will my Cancer Return? Every Little Twinge Is Not Cancer Cancer survivors often report that fear of recurrence shadows everything and every thought. Any little ache, pain, or twinge can trigger this fear that the cancer has returned, and the fear

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itself can make your discomfort seem worse. (See Session 2 for tips on coping with the fear of recurrence.) An ache, pain, or twinge can mean many things or nothing at all. Knowing what to expect can reduce your concerns about pain and other symptoms that are common after being treated for cancer.

When to Call the Doctor • If a specific symptom occurs • If a common short-term symptom persists • If medication for a symptom doesn’t work or stops working Ask your doctor how to contact the office when you have questions. Will medical staff answer questions by telephone, e-mail, messaging, or fax, or do they prefer that you schedule an office visit? If you don’t hear back, try another approach. It is always okay to contact your doctor if you have questions or concerns about your health.

Concerns for Your Family Some cancers are hereditary and run in families based on genes. If you think that cancer may run in your family, talk with your doctor. Your doctor may refer you to a genetic counselor. A genetic counselor will meet with you, gather information on your health and a history of cancer in your family. You may learn that cancer screening or genetic tests would be a good

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idea for you or other members of your family. A genetic counselor can help you or them understand your family’s cancer risks. If you are worried about your brothers’, sisters’, or children’s risk of cancer, make a note in your Follow-up Visit Tool and ask your doctor about this at a follow-up visit. If you are not sure of your family’s cancer history, try to learn more. Ask about your biological relatives who have had cancer. If possible, go back three generations. Talk with family members to find out as much as you can. Write the information down in one place and share the information with family members. As time goes on, others may need this information. The sooner you start making a family health record, the more complete it will be. Not everyone can do this, but if you can, it may be useful to all the members of your family and extended family.Learn more about cancer and heredity.

Taking Care of Yourself Cancer treatment, like the cancer itself, can be hard on your body. You need time to heal. Fortunately, there are things you can do to help that process and improve your chances of living well beyond cancer. That’s what this program is all about. Your Action Plan contain tools for managing your exercise and diet goals, your emotional health and well-being, and your short- and long-term physical health after treatment. Together, these issues are the cornerstones of health and survivorship. Even though you battled cancer, you will also want to pay extra attention to other health conditions such as diabetes, heart disease, or high cholesterol. They may affect your cancer recovery.

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Tips for managing other health conditions: If you have diabetes or have been told you are at risk for diabetes, you need to manage your blood sugar. Keeping your blood sugar level within your target range can prevent or delay blood vessel damage. Your doctor may recommend regular tests related to your risk for diabetes or its diagnosis. Keep your blood pressure in check. High blood pressure (hypertension) can lead to various cardiovascular complications for anyone. Blood pressure is provided in two numbers – one over the other. The top number is the systolic pressure. The bottom number is the diastolic pressure. A normal range is less than 120 for the top number and less than 80 for the bottom number. A top number of 120-129 is elevated. High blood pressure is a top number of 130 or above and a bottom number above 80. It is a good idea to learn what is normal for you. Write it down, along with any guidance you receive related to blood pressure. Control cholesterol and triglycerides. Unhealthy levels of blood fats—cholesterol and triglycerides—can cause cardiovascular disease in anyone but is usually worse for people with diabetes. Make healthy lifestyle changes. Focus on the healthy lifestyle choices we discussed in the last session. Try to eat well and get enough rest and physical activity. Take steps to cut back on risky behaviors, such as smoking or drinking alcohol. As you do so, seek support. Talk with the program leader or your health care team about resources that can help. Also, refer to Session 2 and the resources provided at the end of this workbook.

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Communicate with your doctor about your health. If you are working hard, but still unable to reach your blood sugar, blood pressure, or blood fat goals, talk with your doctor. Your doctor may prescribe medication or suggest other changes to your follow-up treatment plan.

Support When you are not in treatment, you may have different needs for support. It is important to recognize what you need in order to go forward. You might look to a support group or an online forum to get emotional support and learn how best to express your feelings and needs during this transitional time. Support might also come in the form of an exercise buddy who helps you reach your exercise goals or someone to grocery shop with to make sure you are eating the foods recommended in Session 3 on nutrition. Support might also mean asking friends and family to take on tasks for you that are physically tiring or mentally overwhelming, like household chores or maintaining your medical records. If you are not sure where to start in terms of finding support, try to call the Cancer Support Community Helpline: 888-793-9355.

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Education The Cancer Transitions program philosophy is that an educated survivor who continues to work with his or her health care team will improve their health and quality of life away from treatment. The key things to educate yourself about after cancer treatment include:

• Emotional health and well-being • Exercise • Medical management

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SQUAREPATTERN

• Nutrition

Workbook Exercise 1. How have the topics and lessons of the Cancer Transitions program impacted your life?

2. What can you do to improve your cancer survivorship experience going forward?

3. What other topics would you want to know more about as a survivor?

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Looking Forward Of all the elements underlying this program—support, education, and hope—perhaps the most important is the last one. Hope is certainly the most personal. By its nature, hope looks forward.

As a final exercise in this program, we ask you to think about what matters to you. When you are ready, write about what you hope for yourself. There is no limit on the number of things you can hope for, nor is there a limit on how much time you have to write or revise the list. This activity can be your work in progress. As some of your hopes come to pass, you might choose to cross them off the list and add new things to look forward to and work towards.

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SQUAREPATTERN

You are a cancer survivor. Some days will always be better than others. That’s true for everyone. Hope helps us get through the night and out of bed in the morning. We can hope for the sun to shine or the rain to fall. We hope to see a graduation or wedding or birthday. We hope for a chat with a friend. Hope remains, but perhaps the details have changed.

Workbook Exercise 1. What do you hope for yourself as a cancer survivor?

2. What are your next steps toward survivorship?

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Workbook Exercise 1. Do you have a follow-up care plan with your doctor?

2. Have you experienced any short- or longterm health effects from cancer treatment? If so, have you discussed them with your doctor at follow-up visits?

SQUAREPATTERN

3. Exercise Log—Fit exercise into your life and complete your Exercise Log for next week. Remember your pedometer or fitness tracker.

4. In addition to charting weekly exercise and dietary goals and accomplishments, consider keeping a daily record of your physical and emotional health in the Health Diary portion of the Cancer Survivor’s Health Journal.

5. What final questions do you have?

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Notes

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Notes

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Resources Session 1 – Get Back to Wellness: Take Control of Your Survivorship

American Society for Clinical Oncology’s “Cancer.Net” (888-651-3038) http://www. cancer.net/patient/Survivorship Cancer Survivor’s Network. American Cancer Society. https://csn.cancer.org

From Cancer Patient to Cancer Survivor: Lost in Transition. Authors: Hewitt M, Greenfield S and Stovall E. Institute of Medicine and National Research Council, National Academy of Sciences. 2006. Available at

https://www.nap.edu/catalog/11468/from-cancer-patient-to-cancer-survivor-lost-intransition

Facing Forward series, including “ Life After Cancer Treatment.” https://www.cancer.gov/ publications/patient-education/facing-forward National Cancer Institute. 800.4 CANCER (800.422.6237) Cancer Survivor’s Toolbox. National Coalition for Cancer Survivorship. 877.NCCS.YES (877.622.7937) www.canceradvocacy.org Session 2 – Emotions and Health

American Cancer Society. https://csn.cancer.org. 800.ACS.2345

American Psychosocial Oncology Society. www.apos-society.org. 866.APOS.4.HELP CancerCare. www.cancercare.org. 800.813.HOPE Cancer Support Community. www.CancerSupportCommunity.org. 888.793.9355 Katz, Anne. 2010. Man Cancer Sex. Oncology Nursing Society. Pittsburgh PA.

Katz, Anne. 2009. Woman Cancer Sex. Oncology Nursing Society. Pittsburgh PA LIVESTRONG Fertility. www.livestrong.org/fertility. 855.220.7777

Cancer Hope Network. www.cancerhopenetwork.org. 877.HOPE.NET

Institute of Medicine. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs http://nationalacademies.org/hmd/reports/2007/cancer-care-for-the-wholepatient-meeting-psychosocial- health-needs.aspx Patient Advocate Foundation. www.patientadvocate.org. 800.543.5274

The Patient/Partner Project. www.thepatientpartnerproject.org. 1.8.MORAL.SUPPORT

The National Center for Complementary and Alternative Medicine. http://nccam.nih.gov 888.644.6226 Session 3 – Eating Well and Staying Active

Academy of Nutrition and Dietetics 800.877.1600. www.eatright.org. Click on “Find an Expert” and “Search by Expertise” to find a “Cancer/Oncology Nutrition” dietitian.

American Heart Association. Tips for Exercise Success. www.americanheart.org and http:// bit.ly/2sUo228 American Institute for Cancer Research. 800.843.8114. www.aicr.org or Living Well with Cancer and Beyond: your Cancer Resource at https://store.aicr.org/collections/cancersurvivors/products/cancer-resource-living-with-cancer

Body and Soul: A Celebration of Healthy Eating and Living for African Americans. https:// rtips.cancer.gov/rtips/programDetails.do?programId=257161

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Cancer Fitness: Exercise Programs for Patients and Survivors. Schwartz, AL (2004). Simon & Schuster. The Cancer Nutrition Center. http://www.cancernutrition.com

Get Active. American Cancer Society. www.cancer.org/healthy.html

Exercising with Health Challenges. American Council on Fitness. www.acefitness.org and http://bit.ly/2r3ic2g National Cancer Institute. Eating Hints for Cancer Patients, Before, During, and After Treatment. Free booklet, available at: www.cancer.gov/cancerinfo/eatinghints or 888.4.CANCER Oldways and the Latino Nutrition Coalition. 617.421.5500. www.oldwayspt.org

Oncology Nursing Society. Get Up Get Moving. https://www.ons.org/make-a-difference/ quality-improvement/get-up-get-moving Session 4 – Medical Management Beyond Cancer: What You Need to Know

Cancer Survivors Network (a program of the American Cancer Society) https://csn.cancer. org/ Center to Advance Palliative Care https://getpalliativecare.org/provider-directory/ Intercultural Cancer Council www.iccnetwork.org

National Hospice and Palliative Care Organization https://www.nhpco.org/find-a-careprovider/ Nueva Vida. www.nueva-vida.org. 202.223.9100

OncoLink OncoLife https://oncolife.oncolink.org Planet Cancer. www.planetcancer.org

Native American Cancer Research. www.natamcancer.org. 303.838-9359 Sisters Network Inc. www.sistersnetworkinc.org. 866.781.1808 The Mautner Project www.mautnerproject.org. 866.MAUTNER

The Ulman Cancer Fund for Young Adults. www.ulmanfund.org. 888.393.FUND (Source: 2020 NCCN Survivorship Guidelines)

https://www.npr.org/2019/04/25/717059239/a-saner-mindset-for-weight-loss https://www.cdc.gov/healthyweight/index.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4386524/ https://pearlpoint.org/nutrition/

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This Program Was Made Possible With Support From:

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About the Program Sponsor Cancer Support Community The Cancer Support Community (CSC) is a global non-profit network of 175 locations, including CSC and Gilda’s Club centers, health-care partnerships, and satellite locations that deliver more than $50 million in free support services to patients and families. In addition, CSC administers a toll-free helpline and produces award-winning educational resources that reach more than one million people each year. Formed in 2009 by the merger of The Wellness Community and Gilda’s Club, CSC also conducts cutting-edge research on the emotional, psychological, and financial journey of cancer patients. In addition, CSC advocates at all levels of government for policies to help individuals whose lives have been disrupted by cancer. In January 2018, CSC welcomed Denver-based nonprofit MyLifeLine, a digital community that includes nearly 40,000 patients, caregivers, and their supporters that will enable CSC to scale its digital services in an innovative, groundbreaking way. For more information, visit www. CancerSupportCommunity.org. 5614 Connecticut Avenue NW | Suite 280 Washington DC20015 1-888-793-9355 www.CancerSupportCommunity.org So that no one faces cancer alone®

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