Asymptomatic or smoldering myeloma with no symptoms and slow growing cancer cells

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1 ESSENTIALS Multiple Myeloma Diagnosed with Multiple Myeloma? It s important to understand everything you can about your diagnosis, possible treatments, and places to go for support and care. Cancer is serious, but the more you know, the more you can do to manage the disease. Here are some essential actions you can take. Starting Point Learn facts about multiple myeloma and your diagnosis. Multiple myeloma is a cancer that starts in the white blood cells of bone marrow; specifically in plasma cells. Plasma cells make antibodies which help the immune system protect the body from disease. When plasma cells divide without control, cancerous myeloma can form as a mass in the bone marrow. This may also cause damage inside or outside of solid bones, causing pain and weakness due to brittle bones. There are a number of definitions or types of multiple myeloma. Multiple myeloma is when myeloma cells collect in several bones throughout the body, and possibly in organs such as the kidneys. Plasmacytoma is when myeloma is evident in only one part of the body. Localized myeloma is when myeloma is found in one site with exposure to neighboring sites. Extramedullary myeloma involves organs such as skin, muscles, or lungs. Multiple myeloma is commonly divided into two distinct groups: Asymptomatic or smoldering myeloma with no symptoms and slow growing cancer cells Symptomatic myeloma with common symptoms such as anemia (when red blood cell counts are low), which can lead to more infections, abnormal bleeding and fatigue, and/or bone pain and possibly numb or weak feelings in the legs or arms. Treatment options depend upon several things, including: the stage of cancer; whether the disease has spread to other parts of the body; your age and overall health; and the results of diagnostic tests. It s important to talk with experts in multiple myeloma (specifically hematologists and oncologists). It helps to do your own research with credible sources and to learn as much as you can about your diagnosis and personal health, so you can ask questions that will help you receive the best possible treatment and quality care. Page 1

2 Confirm Your Diagnosis After a physical exam, tests to help doctors accurately diagnose multiple myeloma can include: Blood tests: including tests to check the total protein level, albumin level, calcium level, kidney function, and CBC (complete blood count). Urine tests: to identify abnormal levels of proteins or antibodies Bone x-rays: to show fractures or hollowed out areas of bone Bone density tests: to show bone loss Genetic tests A bone marrow biopsy (using a needle to remove and study some bone marrow) may also be performed. Doctors are looking for the presence of a monoclonal protein spike (M spike), which is produced by cancerous myeloma cells found in bone marrow and reflects the amount of myeloma present. The stage of cancer is determined with these diagnostic tests to define its characteristics and where it is located. Stage III refers to more aggressive cancer. Questions to ask before having diagnostic tests Which diagnostic tests are the most useful for me? How soon will I know the results? Will someone from the team call me to tell me about my test results, or is it my responsibility to follow up with the team? If I do have cancer, where exactly is it and what is the likelihood that it will spread further? What is the stage? Who will talk with me about next steps? You should be referred to specialists in medical oncology and/or hematology (blood cancer specialist) for confirmation of a myeloma diagnosis and information about next steps. Doctors are not insulted when you ask for referrals for a second or third opinion. Often insurance companies encourage more than one opinion. Consider a board certified doctor who works at a highly skilled Comprehensive Cancer Center near you (the NCI offers information ). Multiple myeloma is a disease that does not have a cure, but with proper and effective treatment, the disease and its side effects can be managed. It is critical to be able to trust the doctor(s) and health care providers on your team and approach them, always, with open communication. Who would you like to work with for treatment? Do I trust my team s expertise in treating multiple myeloma? Do I like these professionals? Do I feel that my team can address my needs? Is my doctor telling me about ALL of my treatment options? (Including clinical trials?) Does my doctor let me ask questions without rushing me and give me answers that I understand? Can my medical team help me sort through insurance questions and coverage? empowered by knowledge Page 2

3 Take Time Learn everything you can. You typically have some time to make treatment decisions. You will receive a lot of information, and it can feel overwhelming at first. Bring someone to appointments who can help you sort through information, take notes, and ask questions. If you spend time learning about your situation and talking through your options with people who understand your needs, you can make more thoughtful decisions about treatment and feel a greater sense of control. Questions to Ask: What is the goal for treatment? (Is it to control the cancer, manage symptoms, or something else?) What are the costs, benefits, and risks of each treatment option? What are the chances that this treatment will help reduce the spread of this disease? Are there any clinical trials that I should consider? Will one team or physician be in charge of my medical treatment throughout treatment or will I see a number of different people? How and where is treatment given? How long will it last? What kind of side effects can I expect from each treatment, and how long will they affect my lifestyle? What can be done to manage potential side effects? Can you put me in touch with others who have received the treatment that you recommend for me? What else can I do to stay as healthy as possible? If this treatment fails to control the spread of cancer, do other treatment options exist for me? Can I call or my doctor if I have questions along the way? Treatment Options Treatment for multiple myeloma depends upon how and where the cancer has grown, whether or not you have symptoms, and your overall health. It is valuable to ask about ALL of your treatment options before starting a treatment plan. Before you choose a treatment plan, ask your doctor(s) about possible side effects from each treatment option, and for tips to manage them. In general, people with multiple myeloma should drink plenty of fluids to stay hydrated and help maintain proper kidney function. Kidney failure is a common complication with multiple myeloma patients and should be managed with the help of your health care team. Other problems that would need attention include weakness, bone fractures, and infection. While living with multiple myeloma, you ll need routine follow-up care with your doctor. Some treatments can cause long-term effects so be sure to ask about how to manage any symptoms you experience. Treatment often includes a combination of different therapies, including watchful waiting (often with smoldering myeloma), chemotherapy, bone marrow transplantation, and radiation. strengthened by action Page 3

4 Watchful Waiting When the approach of watchful waiting is taken, no active chemotherapy is provided. Instead, your medical team will monitor the state of your disease with routine diagnostic tests. Watchful waiting can take years and is common when cancer isn t causing symptoms and is growing very slowly. Induction Therapy Many different types of drugs are used to treat myeloma, often in different combinations. Each type of drug kills cancer cells in a different way: Chemotherapy (used to kill fast-growing cells); targeted therapy (specific antiboides which target specific proteins found in myeloma cells to then stop myeloma cell growth); steroids (which may trigger the death of myeloma cells). Drugs you may receive, include: Dexamethasone, melphalan, cyclophosphamide, doxorubicin (Doxil), thaloidomide, lenalidomide (Revlimid ), and bortezomib (Velcade ), carfilzomib (Kyprolis tm ) are drugs that can be used alone or combined with others to control cancer cells. Radiation Therapy Radiation therapy may be used to relieve bone pain or shrink a bone tumor, often used in combination with other therapies. Bone Marrow/Stem Cell Transplantation Two types of bone marrow transplantation are considered: Autologus bone marrow or stem cell transplantation which makes use of one s own stem cells to fight the cancer. Allogeneic transplant which makes use of someone else s stem cells to fight the cancer. This is a very risky, but potentially beneficial type of treatment. clinical trials At leading cancer centers, clinical trials (research studies) enable patients to utilize new treatments for multiple myeloma, including recurrent disease. Some clinical trials test new ways to use drugs or techniques that are already approved. To find out more about clinical trials, speak to your doctor. Plan to Manage Side Effects Side effects depend upon which treatment you undergo. Often drugs or bone marrow/stem cell transplantation to treat myeloma will affect healthy blood counts causing low blood levels that will increase your risk for infections, cause easy bruising, and fatigue. Other side effects from treatment can include fatigue, hair loss and digestive problems such as nausea and vomiting, diarrhea or constipation, and a decrease in appetite. There are medications to treat side effects. It is the role of your health care team to review these side effects and help you mange them effectively both during and after treatment. Supportive care is used to prevent or treat myeloma symptoms and therapy side effects. Supportive care is also called palliative care, comfort care, and symptom management. Page 4

5 You re Not Alone Help is available and important. Questions to ask yourself What type of help do I want? (Help at home? Help with driving or medical decisions?) Who would you like to talk with about treatment decisions? Or join you at medical appointments? Does your doctor recommend an oncology social worker to talk with? Or a support group? Who would be able to help you with practical support, such as work leave, family care, or driving? Can a website scheduler help? (try Can a cancer support organization provide you with useful services or information? Who can help you sort through insurance or financial questions? People you feel close with want to help. Think about what each of them can do, and let them know how they can help. Try to be patient when they can t help and seek back-up support. Many cancer support organizations, spiritual organizations, and local hospitals can link you with supportive people and services. People diagnosed with multiple myeloma often learn a lot from others who have similar experiences. Contact organizations that specialize in multiple myeloma (see the resources we list). They can provide information and connect you with others who understand. Other cancer survivors can Talk with you about questions you can t easily ask your doctor or friends. Share information about where to go for support and services. Give you tips to help you stay on track with difficult medical appointments and treatment schedules. Help you explore what others have experienced and what has helped. Through support groups, I met people I would never have met if I didn t have this disease. Wonderful people who will be lifelong friends. We have a common bond. They care and want to know what I am going through and their support gives me strength. Oliva, cancer survivor sustained by community Page 5

6 Maintain Hope You may have cancer, but cancer doesn t have you. Many people with cancer find new ways to think about their lives and priorities. You can find things about your experience that are inspiring for you and for those around you. It s important to appreciate the hopeful details in every moment. Try to do what you can to feel healthy and gain energy. Try to spend time with people who make you feel good. Try to be pro-active and ask yourself What is important to me? How can I improve my health? Do I get enough rest? Can I spend more time with people I enjoy? Can I make plans to do something I ll look forward to? Can I do things that will give me a hopeful sense of peace? CSC Resources for Support Cancer Support Community s resources and programs are available at no charge. Open to Options Free one-on-one decision counseling from licensed mental health professionals who help patients process information about their situation, and formulate a list of specific questions for the oncologist. Appointments can be made by calling and by contacting an affiliate providing this service. Affiliate Network Services Almost 60 locations plus more than 100 satellites around the country offer on-site support groups, educational workshops, yoga, nutrition and mind-body programs for people affected by cancer, at no cost. For a full list of affiliate locations, visit the CSC website or call us at The Living Room, online The Living Room offers much of the same programming available at each CSC affiliate, online. You will find webbased support groups, discussion boards and social networking, a build your own website service, and educational materials for patients and caregivers. These services are made available with generous contributions from CSC supporters. To access these services, visit Page 6

7 w w w. c a n c e r s u p p o r t c o m m u n i t y. o r g C re di b le Res ou r c es Multiple Myeloma Specific Information & Support The Multiple Myeloma Research Foundation International Myeloma Foundation Leukemia and Lymphoma Society American Society of Hematology General Cancer Information & Support, with Practical Facts about Myeloma National Cancer Institute (NCI) American Cancer Society (ACS) Cancer.net Cancer Support Community (CSC) CancerCare Financial & Legal Support Patient Advocate Foundation (PAF) Cancer Legal Resources Center Clinical Trials and New Treatment Developments, search trials and talk with experts: Food and Drug Administration (FDA) NCI s Clinical Trials Registry CSC s Emerging Med Search Caregiver Support, Complementary Support National Family Caregivers Association National Center for Complementary and Alternative Medicine The Cancer Support Community provides this information as a service. This publication is not intended to take the place of medical care or the advice of your doctor. We strongly suggest consulting your doctor or other health care professional to answer questions and learn more Cancer Support Community. All rights reserved. T h i s p r o g r a m w a s m a d e p o s s i b l e w i t h S U PPOR T f r o m : Onyx Pharmaceuticals Page 7