When you learn you have Chronic Lymphocytic Leukemia An educational resource for patients and caregivers provided by Teva Oncology. 1
If you have just been diagnosed with chronic lymphocytic leukemia (CLL), you may be feeling many different emotions. Or you may just feel numb. This resource can help you focus on the next steps to consider taking when seeking treatment for your leukemia. This resource was designed to help you and your loved ones find information that supports a better understanding of CLL and your treatment options. You ll learn the value of working closely with your health care team. And you ll learn how to do it by asking the right questions and communicating effectively. This resource also offers suggestions for managing other important aspects of your life, such as your relationships, emotional health, work, and finances. This resource does not take the place of discussions with your health care team. This book is a tool that provides information about CLL and questions to consider when meeting with your health care team. Please note that all words that appear in green are listed in the Glossary at the end of this book. Let this resource be your empowering guide, assisting you on your treatment journey. 2 next
In this resource you will find information about: Understanding CLL 2 Tests That May Be Done 7 Stages of CLL 9 Partnering with Your Health Care Team 10 Telling Family and Friends 13 Coping with Emotions 17 Managing Finances 19 Resources 26 Glossary 27 3
Understanding CLL Understanding CLL Leukemia is a disease of the blood and bone marrow. Chronic lymphocytic leukemia (CLL) is one of several forms of leukemia. In people with CLL, the bone marrow produces too many abnormal white blood cells. To understand CLL, you first need to know how blood cells are made and what they do. Red blood cells White blood cells Platelets Bone Bone marrow 2
Taking a closer look at blood cells The body makes blood in the bone marrow. Bone marrow is the soft tissue inside of some bones. The process starts with the bone marrow making 2 kinds of immature blood cells: Myeloid stem cells Lymphoid stem cells Myeloid stem cells can develop into 1 of 3 types of mature blood cells: Red blood cells these cells carry oxygen to all parts of the body White blood cells these cells fight infection and disease Platelets these cells prevent bleeding by causing blood to clot Lymphoid stem cells develop differently. They develop into 3 other types of mature white blood cells called lymphocytes. The 3 types of lymphocytes are: Bone marrow White blood cell Erythrocyte (red blood cell) B lymphocytes these cells make antibodies to help fight infection T lymphocytes these cells help B lymphocytes make antibodies to fight infection Myeloid stem cell Lymphoid stem cell Platelets Natural killer cell Natural killer cells these cells attack cancer cells and viruses B lymphocyte T lymphocyte 3
Understanding CLL How CLL develops With CLL, several things may happen: Lymphoid stem cells develop into abnormal CLL cells CLL cells do not become healthy white blood cells CLL cells grow and survive longer than normal cells There is uncontrolled CLL cell growth in the bone marrow CLL cells crowd out healthy blood cells in the bone marrow and blood 4
Symptoms may develop slowly over time In general, CLL slowly gets worse over time. So you may have felt fine at the time of your diagnosis. In fact, CLL usually is found during a routine blood test as part of a regular physical exam. Some people have a faster-growing form of CLL. This form of CLL is more likely to have symptoms appear earlier. These symptoms may include: Swollen lymph nodes in the neck, collarbone area, underarm, or groin Pain or fullness below the ribs from an enlarged spleen Recurring infections Other signs of CLL may include: Tiring easily Weight loss for unknown reasons Shortness of breath during light activity Neck Underarm Swollen lymph nodes Groin 5
Understanding CLL The CLL patient People who are middle-aged or older are more often diagnosed with CLL than younger individuals. This condition is also more common in males, whites, as well as people of Russian-Jewish or Eastern European-Jewish descent. 6 CLL Do I have a slower or faster-growing form of CLL? Could the symptoms I m experiencing be caused by CLL? How does the disease progress? How long does it take for the disease to progress? How can I take care of myself? What do I need to know about this disease?
Tests That May Be Done Tests to diagnose CLL Your health care provider used certain tests to diagnose your CLL. Tests to diagnose CLL may include: Complete blood count (CBC) this test looks at the number of blood cells and other substances in a blood sample Immunophenotyping this technique analyzes markers on the surface of malignant blood cells to determine the specific cell type (for example, myeloid cells, B lymphocytes, T lymphocytes) Cytogenetic analysis this procedure looks at changes in the structure or number of chromosomes (structures carrying genetic information) in the lymphocytes Mutation testing this technique is used to check bone marrow or blood samples for specific mutations within genes that may indicate a better or worse prognosis (outlook) Bone marrow aspiration and biopsy these tests involve the removal of bone marrow, blood, and bone using a needle inserted into the hipbone or breastbone for examination under the microscope or with other techniques 7
Tests That May Be Done Tests to monitor CLL After the diagnosis, your health care provider will use more tests to determine if the disease has spread in the bone marrow, blood, and other parts of the body. These tests may include: Chest x-ray this procedure uses an x-ray (a type of energy beam) to take a picture of your organs, bones, and lymph nodes in the chest area to look for sites of disease. It can also help see whether you have an infection in the lungs CT scan (CAT scan) this technique uses x-rays and a computer (and sometimes injected dye) to take a series of pictures of the body from different angles. This test can help tell whether CLL is growing in certain lymph nodes or the spleen MRI (magnetic resonance imaging) this procedure uses a magnet, radio waves, and a computer (and sometimes injected dye) to take a series of detailed pictures of an area of the body, usually the brain and spinal cord. This procedure is not often needed in people with CLL Blood chemistry studies these tests measure the levels of certain substances released into the blood by organs and tissues. Abnormal levels can be a sign of disease in an organ or tissue Antiglobulin test this test looks for the presence of antibodies (natural immune system substances) on the surface of red blood cells and platelets. When present, these antibodies can destroy red blood cells and platelets 8 TESTING Why do I need this test? Is this test covered by my insurance? How is the test done? How long will the test take? Can I come alone for this test?
Stages of CLL Stages of CLL To choose the right treatment option for you, your health care provider needs to know the stage of your disease. Staging refers to how far the disease has progressed. The stages of CLL are: STAGE 0 Too many lymphocytes in the blood No symptoms STAGE I Too many lymphocytes in the blood Enlarged lymph nodes STAGE II Too many lymphocytes in the blood Enlarged lymph nodes Enlarged spleen or liver STAGE III Too many lymphocytes in the blood Enlarged lymph nodes Enlarged spleen or liver Too few red blood cells STAGE IV Too many lymphocytes in the blood Enlarged lymph nodes Enlarged spleen or liver Too few red blood cells Too few platelets 9
Partnering With Your Health Care Team Know your health care team Creating and following your treatment plan is a team effort. It often requires the skills of different professionals. Talk with your health care provider about which specialists have the training and experience to best serve your needs. These specialists might include: Medical oncologist a cancer doctor or physician Oncology nurse Hematologist specializes in treating leukemia Registered dietitian Nurse practitioner Physical therapist Physician s assistant Palliative care specialist helps manage symptoms Radiation oncologist Social worker Surgeon Pharmacist 10 Your health care provider may refer you to a specialist, or you can ask for a referral.
Take an active role in your care Remember that you have a say in setting up your treatment plan. Also, keep in mind that your health care team truly wants to help. But they need your input to help them do a better job. Ways you can take an active role in your care include: Learn all you can about CLL and its treatment. Use only sources you can trust, such as government and national organizations materials and Web sites Write out a list of questions and concerns to bring to your appointments. Put the most important ones at the top of your list Tell your health care team what information is most important to you, how much detail you want, and when you want to get the information Ask your health care team to explain anything that is not clear to you Repeat what you heard to make sure you understood it correctly Take notes during appointments to review later Bring a family member or friend with you to appointments to help you remember important information Talk with a nurse, who may be able to spend extra time answering your questions 11
Partnering With Your Health Care Team The value of good communication Good communication with your health care provider can help you feel better about the choices you are making. It also can help you feel more in control. To help improve communications with your provider, try to: Ask as many questions as are needed for you to understand the information Ask for a simpler explanation that s easier to understand Focus on getting answers rather than worrying how much time it s taking Ask if there is any other important information you need to know Make sure that you completely understand everything your health care provider talked about before you leave PREPARING FOR TREATMENT Before you start treatment, you may want to ask: What medical records do I need to bring to my treatment session? How long will the treatment take? Can I go to treatment alone or should someone come with me? What are the possible side effects of treatment? After treatment, when should I call you about any problems? 12
Telling Family and Friends Talking with loved ones Discussing your illness may be more difficult with a loved one than it is with someone you re not close to. But this is a step you should consider taking. It s also a step that can help you accept the reality of your situation and then move forward. Getting started Before you talk with your loved ones, think about whom you need to tell and how much information you want to share. It may help to: Make a list of the people closest to you whom you need to tell in person Make a list of people less close to you who could be told by another family member or friend Decide how often you can handle explaining your illness, treatment, and prognosis (outlook). Have the name of a reliable Web site (see Resources section) for them to visit for more information Identify trigger points or topics that are too sensitive for you to discuss. Plan a way to quickly change the subject to something that s easier to talk about Hold a family meeting You may find that talking one-on-one with your loved ones is too hard. A social worker or trained counselor may be able to help organize a family meeting for you. This may help family members express their feelings more freely. 13
Telling Family and Friends How to answer What can I do to help? Patients hear this question a lot. Your first reaction may be to say that you don t need any help right now. Remember that your loved ones truly want to support you and be useful to you. You can tell them they can help by: Just being themselves around you Listening to your problems without offering solutions Being at ease with you and not worrying about upsetting you Remembering you are the same person You can also answer this question by being very specific about help you may need now or in the future. For example, you can ask for help with: Taking care of children and pets Shopping for food and cooking Providing rides to medical appointments Housecleaning Yard work 14
Changing roles When a family member is ill, you may see changes in the roles and responsibilities of different family members. Some changing roles and responsibilities include: Children may be asked to do more chores around the house A spouse or partner may take over bill paying, shopping, or yard work A spouse or partner may feel a need to get a job When you re used to being in charge and independent, it can be hard to ask for help. Remember that by taking on new roles or responsibilities, family members often feel they are supporting your efforts to fight your disease. Use the Internet to stay connected If you are comfortable sharing your updates with family and friends, consider using the Internet. You may want to ask a computer-savvy friend or family member to help you set up a Web site or blog. This is an efficient way to give updates on your medical status to family members and friends near and far. 15
Telling Family and Friends Keeping relationships strong Sometimes relationships can grow stronger in difficult times like these. To maintain an open and honest relationship with your spouse or partner, keep these suggestions in mind: As much as possible, try to keep your relationship the way it was before your illness Express your feelings by talking more. Work with a counselor if this is hard for you Be realistic about demands. Acknowledge any stress or guilt he or she may have about time spent away from you Spend time apart. Give your spouse or partner time and space for his or her own needs and to regain energy needed to support you Talk openly and honestly about changes in your sex life. A counselor can help guide this discussion 16
Coping With Emotions Acknowledging your feelings Because of your illness, you ve likely experienced a range of emotions, from shock, to fear, to denial. Keep in mind: it s okay to feel a lot of emotions. Many patients feel anxiety or depression. But when these emotions disrupt your daily life, it may be time to seek help. Talk with your health care provider about any signs of anxiety you notice, which may include: Feeling tense and nervous Racing heartbeat Trouble breathing or catching your breath Having a lump in your throat or a knot in your stomach If you have symptoms of depression that last more than 2 weeks, tell your health care provider. These symptoms may include: Feeling helpless or hopeless Loss of interest in relationships and things you used to enjoy Loss of appetite Feeling short-tempered and grouchy Crying for long periods of time or many times a day Feeling wired; having racing thoughts or panic attacks Having trouble sleeping, such as sleeping too little, too much, or having nightmares 17
Coping With Emotions Sharing your emotions Sharing your feelings with others can help you be more comfortable with these feelings. Start with talking to your loved ones. If this is difficult, you can reach out to others who know effective ways to help you cope. These people might include: Members of your health care team Health psychologists Oncology social workers Other mental health experts Faith or spiritual counselors Joining a support group As alone as you may sometimes feel, remember that many other people are facing similar challenges. You can connect with these people by joining a support group. Some groups meet in person, by phone, or over the Internet. Hearing other people s stories can give you valuable insight into how to cope with your emotions. Some group members prefer to simply listen and not talk. And that s fine. Your health care team may be able to direct you to a local support group. 18
Managing Finances Recognizing financial challenges Paying for health care, along with normal life expenses, is a major concern for many people who are living with CLL. Having treatment can create some financial challenges for you and your family. Some of these challenges may include: Less household income because you need to work less or stop working Expensive or unaffordable treatment Treatment that is not fully covered by insurance Prescription drugs that are not covered by insurance Extra out-of-pocket expenses associated with some treatments, such as transportation, childcare, lodging, and in-home assistance Several strategies and resources are available that may help alleviate some of the burden associated with health care costs. 19
Managing Finances Ask your health care provider about the cost of treatment up front You will worry less when you face financial issues early on. Ask about the cost of the treatment or medicine your health care provider recommends. Knowing the cost early on gives you time to plan for any extra expenses. Appoint a financial advocate During treatment, you may not have enough time or energy to manage your finances. You may want to consider asking a family member or close friend to help you stay on top of bills, insurance paperwork, and other financial matters. Knowing you have someone in charge of your finances might improve your peace of mind during this stressful time. 20
Taking a medical leave Depending on your age and the kind of treatment you receive, you may need to take some time off from work. If you and your employer qualify under the Family and Medical Leave Act (FMLA), you have the right to take an unpaid, job-protected medical leave with continued health insurance coverage. The amount of time you are allowed to take off can vary. Talk to your social worker or your human resources department at work to get more details. 21
Managing Finances Know your health insurance coverage It is important to understand your insurance coverage. Since insurance plans often change, it s a good idea to review your coverage from time to time. Some important costs you need to know include: Premium The cost of the plan. Usually paid each month Deductible The fixed amount of annual expenses you need to pay before insurance begins to pay for medical expenses Co-payments A fixed dollar amount you pay at the time of medical service or when you pick up a prescription medicine Co-insurance The percentage of expenses you share with your health plan. For example, you may pay 20% and the plan pays 80% In-network and out-of-network The cost of using a health care provider who is in your plan s network is usually much less than the cost of a provider who is not in your plan s network Lifetime and annual maximums or caps The most amount of money a plan will pay while you are enrolled in the plan during your lifetime and during each year. Under the Affordable Care Act, plans that began on or after September 23, 2010, can no longer impose lifetime caps, and as of January 1, 2014, plans cannot impose annual limits on essential health benefits Request a case manager from your insurance company Find out if your insurance company can provide a case manager to assist you. He or she will be your primary contact should you need to speak with someone about your health insurance claims and your policy. 22
When you don t have enough coverage If your insurance doesn t fully cover the cost of your treatment or prescription medicine, you still have options. Ask your health care team how you can find out about: Patient assistance or prescription assistance programs through pharmaceutical manufacturers Prescription discount/savings programs through the National Association of Counties (www.naco.org) and various state programs Co-pay assistance programs and foundations that help pay co-pay fees or insurance premiums Participating in a clinical trial in order to receive free or discounted study medicine When you don t have private insurance Ask your social worker if you may be eligible for benefits under a public program funded by the government. These programs pay for health insurance, disability benefits, or make cash payments to qualified patients. Ask if you may qualify for: Medicare Medicaid Veterans benefits Social Security Disability Income (SSDI) Supplemental Security Income (SSI) 23
Managing Finances Getting financial assistance You can get financial aid for expenses related to your treatment in different ways. A good first step is partnering with the financial services department at your treatment center. They can help you get the most out of your insurance coverage. You may also use these strategies for financial aid: Work with your health care provider to create a payment schedule you can manage Apply for grants or financial aid from employers, labor unions, community service organizations, religious or fraternal groups, or cancer support organizations Coverage through COBRA The Consolidated Omnibus Budget Reconciliation Act (COBRA) allows people who lose, leave, or change jobs to continue with their former employer s insurance plan for 18 to 36 months. This can help them have better coverage for less money than they might have with an individual plan. Ask your social worker or the human resources department at work to give you more details. 24
MANAGING FINANCES What will be the cost of this treatment? Is this treatment expensive? Is there a similar treatment? Do you know if my insurance plan covers this treatment? Who can help me find out if I m covered for this treatment? Do you know of any financial assistance programs for this treatment? Could I get this kind of treatment at a lower cost if I join a clinical trial? Is there any way the cost of this treatment could be adjusted to match my financial situation? If I need to pay for treatment, can we work out a monthly payment schedule that would not be a large financial burden to me? 25
Resources This is a list of helpful resources. Please note that this list was accurate at the time of publication, but is subject to change without notice. Ask your health care team to recommend more resources. American Cancer Society A national organization that provides information about cancer treatment and support services for people with cancer and their loved ones. www.cancer.org 1-800-227-2345 CancerCare A national organization offering free information and support services to cancer patients, their loved ones, caregivers, and the bereaved. CancerCare provides access to educational publications and workshops, financial assistance programs, support groups, and individual counseling with oncology social workers. www.cancercare.org 1-800-813-HOPE (4673) Clinical Trials Information about cancer clinical trials is provided by the National Cancer Institute, an agency of the National Institutes of Health. clinicaltrials.gov Leukemia & Lymphoma Society A worldwide voluntary agency that funds blood cancer research and provides information and services for people with a blood cancer and their loved ones. LLS gives patients access to the latest individual therapy options and blood cancer clinical trials, financial assistance programs, and local support groups. www.lls.org 1-800-955-4572 National Cancer Institute An agency of the National Institutes of Health, the NCI provides in-depth information about many kinds of cancer and offers information about clinical trials. www.cancer.gov 1-800-4-CANCER (1-800-422-6237) 26
Glossary Many of the following definitions are listed in the booklet, What You Need to Know About TM Leukemia, which you can access for free on the National Cancer Institute (NCI) Web site at www.cancer.gov. To find more definitions, visit the NCI Dictionary of Cancer Terms at www.cancer.gov/dictionary. Biopsy (BY-op-see) The removal of cells or tissues, such as bone marrow, for examination by a pathologist. The pathologist may study the tissue under a microscope or perform other tests on the cells or tissue Blood A tissue with red blood cells, white blood cells, platelets, and other substances suspended in fluid called plasma. Blood takes oxygen and nutrients to the tissues, and carries away waste Bone marrow (MAYR-oh) The soft, spongelike tissue in the center of most bones. It produces white blood cells, red blood cells, and platelets Bone marrow aspiration (MAYR-oh AS-pih-RAY-shun) The removal of a small sample of bone marrow (usually from the hip) through a needle for examination under the microscope Cancer A term for diseases in which abnormal cells divide without control Chronic lymphocytic leukemia (KRAH-nik LIM-foh-SIH-tik loo-kee-mee-uh) A slow-growing type of leukemia (blood cancer) in which too many lymphoblasts (immature white blood cells) are found in the blood and bone marrow. Also called chronic lymphoblastic leukemia 27
Glossary Clinical trial A type of research study that tests how well new medical approaches work Complete blood count (CBC) A test to check the number of red blood cells, white blood cells, and platelets in a sample of blood Cytogenetics (SY-toh-jeh-NEH-tix) The study of chromosomes and chromosome abnormalities Hematologist (HEE-muh-TAH-loh-jist) A doctor who specializes in treating blood disorders Immune system (ih-myoon) The complex group of organs and cells that defends the body against infections and other diseases Leukemia (loo-kee-mee-uh) Cancer that starts in blood-forming tissue such as the bone marrow and causes large numbers of blood cells to be produced and enter the bloodstream Lymph nodes (limf) Rounded masses of lymphatic tissue. Lymph nodes filter lymph (lymphatic fluid) and store white blood cells. They are located along a system of lymphatic vessels. Also called lymph glands Medical oncologist (on-kah-loh-jist) A doctor who specializes in diagnosing and treating cancer using chemotherapy, hormonal therapy, and biological therapy. A medical oncologist is often the main health care provider for someone who has cancer 28
Oncology nurse (on-kah-loh-jee) A nurse who specializes in treating and caring for people who have cancer Palliative (PA-lee-uh-tiv) Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment Radiation oncologist (RAY-dee-AY-shun on-kah-loh-jist) A doctor who specializes in using radiation to treat cancer Spleen An organ that is part of the lymphatic system. The spleen makes lymphocytes, filters the blood, stores blood cells, and destroys old blood cells. It is located on the left side of the abdomen near the stomach Stem cell A cell from which other cells develop. For example, blood cells develop from blood-forming myeloid and lymphoid stem cells White blood cell (WBC) Refers to a blood cell that does not contain hemoglobin. White blood cells are made by bone marrow and help the body fight infections and other diseases 29
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Health Care Contact Information Use this page to list the contact information of your health care team Key physicians/health care professionals Other important numbers Name Case manager Specialty Address Phone Physical therapist Spiritual advisor Pharmacy Name Hospital Specialty Address Emergency contact Phone Name Emergency contact Specialty Address Emergency contact Phone 33
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