A Guide to Empowering Patients Living With Mantle Cell Lymphoma (MCL) Understanding MCL and finding the right treatment for you
When you re diagnosed with MCL, life can feel like a blur After an MCL diagnosis, you may be asking Why me? Is there anything I could have done to avoid getting MCL? At this time, there isn t an answer since no one knows exactly what causes MCL. You re not alone MCL is classified as a type of non-hodgkin lymphoma a large and diverse group of blood cancers 1 MCL comprises about 5% of all non-hodgkin lymphomas 2 The average MCL patient age is early 60s 3 MCL is more common in men than in women 3 What happens in MCL? Although the cause of MCL is not known, we do know that B cells a type of white blood cell that s an important part of your immune system become genetically damaged. 1
In MCL, abnormal B cells originate in the mantle zone (outer edge) of the lymph node and grow out of control, crowding out normal cells in the lymph nodes and bone marrow. Abnormal B cells survive longer than healthy cells and build up in the body over time. When this happens, you may develop anemia (low red blood cell count) an increased tendency to bleed (lower platelet count), and an increased risk of infections (lower white blood cell count). 1,4 What are the signs and symptoms of MCL? Your doctor will make sure you have routine blood tests, such as a complete blood count (CBC) or total protein level, to get a more detailed picture of your condition. This will help your doctor make a plan for your treatment. Most patients with MCL have disease involving multiple lymph nodes and other sites in the body. 1,4 Talk to your doctor if you have any of the following: Loss of appetite and/or weight loss Fever Night sweats Nausea and/or vomiting Indigestion Abdominal pain or bloating Feeling of fullness or discomfort as a result of enlarged tonsils, liver or spleen Pressure or pain in the lower back that often extends down one or both legs Fatigue from developing anemia 3
The moment your life changed It s normal to feel what you re feeling Like other major life-changing events, everyone handles a diagnosis in their own way. Some common reactions and issues may include 5,6 : Fear, uncertainty, and anger Shock, disbelief, and sadness Trouble listening to, understanding, or remembering what people tell you during this time Looking more closely at your religious beliefs, personal and family values, and what s important in your life You may have to rearrange and reprioritize some things in your life as you start treatment. Some of these life changes might include 7 : Adapting your daily routine as you go to appointments and through treatment Nurturing relationships with others and knowing how to talk to them about your diagnosis Adjusting your work life
You have options for your MCL treatment When it s time for treatment, it s important to know the options available to you. These include 8 : Chemotherapy: A type of drug (infusion or oral administration) that enters the bloodstream to kill MCL cells throughout the body Oral medications: Agents that block the growth of cancer cells by working against a specific part of that cell (eg, blocking an abnormal protein) Radiation therapy: Given by a machine that uses high-energy rays to kill MCL cells. It can be administered to the whole body or at a specific part of the body where the cancer cells have been found Stem cell transplant: A procedure that is performed after radiation therapy or chemotherapy that replaces cancer and blood stem cells in the bone marrow with a transfusion of healthy blood stem cells (either your own preharvested cells or donor cells) Supportive care: Care focused on relieving MCL-related symptoms, such as infection prevention and treatment for low blood cell counts Talk to your healthcare professional about which options may be right for you. 5
Take an active role in your care When living with MCL, it s important to be an advocate for your own care to get the support you need. Here are some tips that can help you get the most out of your doctor appointments: Before your appointments - Research Educating yourself helps you become the best advocate for your care - Keep a journal Writing down how you re feeling can help you prepare for visits and remember important topics to discuss - Bring a friend This person can help you ask questions and can take notes during your appointments During your appointments - Try to ask the important questions first so you have time to discuss your biggest concerns - Tell your doctor how you feel, especially about any symptoms - If you re confused by anything your doctor says, ask the doctor to explain it again After your appointments - Add upcoming doctor appointments to your calendar - Follow up with your healthcare team if you have any questions
Be open and honest with your healthcare team Whenever your doctor prescribes treatment, tell the doctor if 9 : - You ve had this treatment before - You ve had an allergic reaction to this treatment - You have or have had any other medical conditions - You ve recently been exposed to chickenpox or shingles - You ve ever been treated with radiation therapy or other cancer therapies - You take any vitamins, minerals, herbs, or other supplements - You re planning a family or have any concerns about intimacy, birth control, fertility, pregnancy, or breastfeeding - You take any other drugs (prescription or over-the-counter) - You use illegal or street drugs, which can increase the toxicity of certain cancer drugs 7
Get the most out of your visits by asking questions Sometimes it s hard to remember what to ask your doctor when you have the chance. Here s a list of questions that may help you get more out of your doctor appointments: How will I know if my MCL is getting worse? What kind of treatment may be right for me? What kinds of side effects should I expect? What have been the experiences of other people with MCL??
Surround yourself with support Become part of a community. Support groups and online message boards can help you connect with other people on the same path Lymphoma Support Network (www.lymphoma.org) matches lymphoma survivors and caregivers with volunteers who have gone through similar experiences Invite friends and family to be part of your team. To help you get the support you need, make sure to tell them exactly how they can help. You might ask a family member to: - Be with you at doctor appointments - Go grocery shopping for you or with you - Do something fun with you to take your mind off treatment 9
You have many people on your side From doctors, nurses, and pharmacists to friends, family, and support groups, you have many people available to help. Don t be afraid to speak up and turn to them for support on your journey. Information and inspiration right at your fingertips. The online resources listed here are a good start for finding information about advances in treatment options for MCL, support groups, resources, and events in your area. For more information on MCL American Cancer Society www.cancer.org Leukemia & Lymphoma Society www.lls.org Lymphoma Research Foundation www.lymphoma.org References: 1. Leukemia & Lymphoma Society. Mantle cell lymphoma facts. https://www.lls.org/sites/default/files/file_assets/ mantlecelllymphoma.pdf. Accessed August 28, 2015. 2. Lymphoma Research Foundation. Mantle cell lymphoma. http://www.lymphoma.org/site/pp.asp?c=bkltkaoqlmk8e&b=6300157. Accessed August 28, 2015. 3. American Cancer Society. Types of non-hodgkin lymphoma. http://www.cancer.org/cancer/non-hodgkinlymphoma/ detailedguide/non-hodgkin-lymphoma-types-of-non-hodgkin-lymphoma. Accessed August 28, 2015. 4. Leukemia & Lymphoma Society. Non-Hodgkin lymphoma. https://www.lls.org/resource-center/downloador-order-freepublications?language=english&category=lymphoma. Accessed August 28, 2015. 5. American Cancer Society. The emotional impact of a cancer diagnosis. http://www.cancer.org/treatment/treatmentsandsideeffects/ emotionalsideeffects/copingwithcancerineverydaylife/a-message-of-hope-emotional-impact-of-cancer. Accessed August 28, 2015. 6. American Cancer Society. Coping with cancer in everyday life. http://www.cancer.org/ treatment/treatmentsandsideeffects/emotionalsideeffects/copingwithcancerineverydaylife/coping-with-cancerin-everyday-life-toc. Accessed August 28, 2015. 7. National Institutes of Health. Coping with cancer. http://www.cancer.gov/about-cancer/coping. Published December 2014. Accessed August 28, 2015. 8. National Cancer Institute. What you need to know about leukemia. NIH Publication No. 13-3775. http://www.cancer.gov/publications/patient-education/leukemia.pdf. Accessed September 10, 2015. 9. Leukemia & Lymphoma Society. Things to tell your doctor before treatment. http://www.lls.org/managingyour-cancer/communicating-your-specialist/things-tell-your-doctor-treatment. Accessed August 28, 2015.
For cancer support communities The Advocacy Connector www.advocacyconnector.com CancerCare www.cancercare.org Cancer Support Community www.cancersupportcommunity.com National Comprehensive Cancer Network (NCCN) www.nccn.org/patients Patient Advocate Foundation www.patientadvocate.org 11
Talk to your healthcare professional about which treatment options may be right for you Pharmacyclics LLC 2015 Janssen Biotech, Inc. 2015 09/15 PRC-01373