spotlight series Multiple Myeloma

Transcription

1 spotlight series Multiple Myeloma

2 Table of Contents p r o l o g u e chapter 1 / Empower Yourself... 2 c h a p t e r 2 / W h at i s M u lt i p l e Mye l o m a? c h a p t e r 3 / G e t t i n g a p r o p e r d i a g n o s i s c h a p t e r 4 / T r e at m e n t f o r m u lt i p l e m ye l o m a c h a p t e r 5 / M a n a g i n g s i d e e f f e c t s c h a p t e r 6 / M o v i n g F o r w a r d c h a p t e r 7 / T i p s f o r C a r eg i v e r s c h a p t e r 8 / Re s o u r c e s Cov.indd 2 9/18/13 4:33 PM

3 Prologue As you gather information about multiple myeloma consider that you re not alone. You can feel confident that there are resources available to help you partner with your health care team, gain information, access services, and regain hope. Reading this booklet is one step towards that goal. In this booklet, we aim to help you make informed treatment decisions, with your quality of life in mind. We also offer strategies and resources to help you manage the emotional and practical impacts of this disease. So when you learn about the tools in your cancer-treatment toolbox, and learn that there are new tools coming, you can feel more confident about whatever comes next. You ll feel better that something out there may help you. Sara, caregiver Prologue 1

4 1 Empower Yourself The Impact of Cancer You are the expert in knowing how you feel, what s important to you, and what you want. When most people are told they have multiple myeloma, they feel a whirlwind of emotions, such as confusion, fear, anger, or depression. Yet, there are actions you can take that may help you feel better and improve your quality of life. Because you are the expert in knowing how you feel, you can cope with the diagnosis of multiple myeloma through learning and support. Regaining control can begin with gathering information to make informed decisions. 2 frankly speaking about cancer / multiple Myeloma

5 The Empowerment Approach I ve learned that I feel more powerful with positive thinking. I believe that if you truly want it, you will fight for it and win. I try to tell myself that this disease is not going to defeat me. I will win! David, patient The Cancer Support Community values the concept of empowerment to help all people affected by cancer. To Feel Empowered: Partner with your physicians and caregivers through open communication Access resources, information and sources of support Make active choices in your treatment Make changes in your life that you feel are important and beneficial There is no instruction manual that tells you how to deal with cancer, and there s no right or wrong way to do it. You decide what is best for you.

6 10 Actions You Can Take to Improve Your Quality of Life 1. Pace yourself. Try to take one moment at a time and solve one problem at a time. Allow your mind to focus on what you can control, such as your quality of life right now, rather than what you can t control, such as the unknowns. 2. Ask for support. Be open with your family and friends about how you feel and how they can support you (based on their ability and time). Offer specific examples, such as: driving you to appointments, researching insurance questions, or just listening when you want to talk. It is also good practice to take someone with you to medical appointments to take notes and help you remember instructions. 3. Communicate with your health care team. Prepare your list of questions for each appointment and take the time you need to get answers. If you don t understand something, it s ok to ask for clarification. It s also helpful to get a second opinion so you can feel informed and confident with your medical team. 4. Retain as much control of your life as is reasonable. Work with your medical team and loved ones to develop a plan that gives you as much control over your life as you desire and can comfortably handle during and after treatment. 5. Acknowledge and express your feelings. A diagnosis of multiple myeloma typically triggers strong emotions including fear. Find constructive ways to express your feelings through writing, talking, physical activity or creative pursuits. Professional help is advised if depression or anxiety is impacting you. 6. Seek support from others living with multiple myeloma. People gain comfort and strength when they talk to others coping with similar issues. Your doctor, nurse, or social worker can direct you to local support groups, or contact the Cancer Support Community, the Multiple Myeloma Research Foundation, The Leukemia & Lymphoma Society, or the International Myeloma Foundation. (See p. 51) 7. Learn relaxation techniques. Relaxation refers to a calm, controlled physical state. Relaxation is not always easy, and you might have to learn how. Consider things that make you feel relaxed: music, a good book, a walk, yoga, meditation, cooking. The goal is to feel peace and enjoy the moment. 8. Do what you enjoy. Try to find humor in the unexpected moments of each day. Consider activities that you enjoy and can do comfortably. This could include spending quality time with people you care about, or enjoying time alone. 4 frankly speaking about cancer / multiple Myeloma

7 9. Make healthy lifestyle choices. It s never too late to make changes that will improve your well-being. Improve your diet, include exercises into your routine that feel good (your doctor can recommend safe exercises), maintain intimacy with others these are all ways to feel better both physically and emotionally. 10. Maintain a spirit of hope. Hope is desirable and reasonable. Even if your cancer experience is complicated, you can set small goals and enjoy daily pleasures. You can redefine how you experience hope by focusing on the activities and connections that give you happiness. If I had a slogan about multiple myeloma, it would be: Face it. Accept it. Adapt. Vivian, caregiver

8 2 What is Multiple Myeloma? When I was first diagnosed I knew nothing about the disease. I never heard about it, so I Googled it like everyone normally does. It said multiple myeloma is a non-curable but treatable cancer. It s the first thing that you read online, so it s a shocker right there from the start. But then after learning more about it, I started to notice how to live to be healthy: eat right, maintain a healthy diet, exercise, stay on track with medication, and just do the basic stuff for good health. With that, I feel like I can live through every diagnosis. Now I know what to do. I know that if it comes back, I am ready to handle it. Thomas, patient 6 frankly speaking about cancer / multiple Myeloma

9 Multiple Myeloma is a blood cancer that starts in the plasma cells of bone marrow. In the bone marrow (the soft material found in the center of bones) are stem cells which mature into different types of blood cells, each with a different purpose: White blood cells help fight infection. There are several types of white blood cells. Plasma cells are the white blood cells that make antibodies, which are proteins that help the immune system protect the body from disease. In patients with multiple myeloma, the plasma cells produce an abnormal protein called an M protein. Source: National Institutes of Health, National Cancer Institute Red blood cells carry oxygen to tissues throughout the body. Platelets help form blood clots that control bleeding. chapter 2 / What is Multiple Myeloma? 7

10 Myeloma is different from bone cancer because it begins in the white blood cells, not in the bone. Though the words sound similar, myeloma is also not melanoma, which is a cancer of the skin. Myeloma develops when plasma cells divide abnormally without control. The overproduction of abnormal plasma cells can cause bone damage and pain. Myeloma can also cause other problems, like anemia (low red blood cell count) and kidney damage. DefinITIons Multiple myeloma is when malignant (cancerous) plasma cells collect in several bones or tissues in the body. Plasmacytoma is when myeloma is found in one location such as one bone, the airway, or digestive tract. Extramedullary myeloma is when malignant plasma cells form tumors outside of the bone marrow, in soft tissue, or in organs of the body such as the liver or lung. Facts About Multiple Myeloma: 22,350 people in the U.S. were diagnosed with multiple myeloma in The lifetime risk of getting multiple myeloma in the U.S. is 1 in 149 (0.67%). Men are at higher risk for multiple myeloma than women. 8 frankly speaking about cancer / multiple Myeloma

11 Multiple myeloma is commonly divided into two distinct groups: Asymptomatic or smoldering myeloma is when multiple myeloma is diagnosed early, with no symptoms, but with slow growing malignant (cancerous) plasma cells. If multiple myeloma is asymptomatic, a watch and wait approach is routinely taken. Symptomatic myeloma is when multiple myeloma is diagnosed and the individual is experiencing symptoms such as unusual weight loss; bone pain in the back or ribs; fractures in the spine; numb or weak feelings in the legs or arms; kidney damage; frequent infections; and/or anemia which leads to fatigue. Usually when symptoms are present, treatment is started immediately. There is no known cause for multiple myeloma, but with improved diagnosis and treatment methods, death from multiple myeloma has decreased dramatically since the 1980s. At this time, there is also no known cure for multiple myeloma, so the success of treatment varies widely for individuals. It is mostly dependent upon the biology of the disease, as well as a person s health before treatment, and how well they can tolerate a treatment. Researchers are studying the details of multiple myeloma cells and other possible risk factors to learn more about what causes it and why. This will hopefully lead to better diagnostic and treatment methods in the future. When I was first diagnosed, a friend called me and asked, is it life threatening? So I said, Life is life threatening. Rafael, patient chapter 2 / What is Multiple Myeloma? 9

12 SymPToms and ComplicaTIons Myeloma symptoms depend on how much the disease has progressed. While smoldering myeloma may have no symptoms, the following problems are most often an indication of symptomatic multiple myeloma: Anemia-related fatigue. People feel overly tired, all the time, when myeloma cells replace oxygen-carrying red blood cells in bone marrow. Anemia makes you look pale and even sleep won t improve anemiarelated fatigue without treatment such as red blood cell transfusions and medication. Bone damage and fractures. The type of bone damage in multiple myeloma is referred to as osteolytic, which looks like bones have holes. Bone pain or broken bones, particularly in the spine, pelvis, ribs and skull, are common complications of multiple myeloma. A high level of calcium in the blood. When unusually high levels of calcium from bone appear in your blood due to tumor-induced bone destruction, it causes feelings of excessive thirst, nausea, constipation, loss of appetite, and even confusion. Hyperviscosity. Myeloma may cause the blood to thicken and flow poorly causing symptoms such as headaches, blurred vision and/or shortness of breath. Peripheral neuropathy. Nerve damage, which feels like tingling, burning or stabbing sensations in the feet or legs, is a common complication of multiple myeloma and its treatment. Kidney (renal) failure. Kidneys can be damaged from high levels of the abnormal M protein, also called Bence Jones protein, found in the blood from multiple myeloma cells. When your kidneys stop working, and you produce little or no urine (or too much urine), fluids, salts and electrolytes can build up in your body to cause illness and dangerous health problems. The goal of treatment is to successfully manage these symptoms and complications. 10 frankly speaking about cancer / multiple Myeloma

13 3 Getting a Proper Diagnosis Most often, a patient goes to the doctor for symptoms such as fatigue, weight loss, urinary problems, extreme thirst, infections, pain or a broken bone. They have no idea that the problem is really blood cancer. Then a routine blood test or bone x-ray may alert a doctor to test further for multiple myeloma. When multiple myeloma has no symptoms, it is sometimes identified during a yearly physical. Multiple myeloma can run in families. If you have a close family member who has multiple myeloma, it is helpful to share your family cancer history with your doctor. chapter 3 / Getting a proper Diagnosis 11

14 Tests for multiple myeloma include: Blood test to check for: High levels of certain proteins in the blood, including the M protein (monoclonal immunoglobins). Increasing amounts of these proteins indicate advancing disease. Low levels of hemoglobin in red blood cells which is also called anemia; white blood cells and platelets may also be low. High levels of calcium, which signals bone damage. High levels of creatinine, which indicates that the kidneys are not working properly. Albumin and beta-2-microglobulin which are normal proteins found in blood. Their levels may be altered in myeloma. These values are used by the physician for staging of the disease. Urine test to check for: High levels of the Bence Jones protein, which is a type of M protein found in urine, indicating that the kidneys could be damaged by multiple myeloma. X-rays to check for: Thinned, broken or otherwise damaged bones throughout your body. Bone Marrow Biopsy to check for: Abnormal plasma cells and their genetics. The biopsy is done by a skilled doctor or nurse who inserts a needle into the hip to remove bone marrow samples (which is called an aspirate) as well as a small piece of the bone (the biopsy). The MGUS biomarker Monoclonal gammopathy of undetermined significance (MGUS) is not cancer but is characterized by a small number of abnormal plasma cells that make M proteins. Most often MGUS does not progress into cancer but in some, multiple myeloma develops. MGUS can be used as a biomarker to monitor for the early development of multiple myeloma. 12 frankly speaking about cancer / multiple Myeloma

15 questions to ask 1. What tests will I need, and what are you looking for? 2. If I need a biopsy, what do I need to know to prepare for it? Will it hurt? 3. What are the risks of having a biopsy? 4. Will my insurance company cover these diagnostic tests? 5. How soon will I know the results? 6. How will I get the results? 7. If cancer cells are detected, will you ask for a second opinion by another pathologist? 8. How accurate are test results? Will I need additional tests to confirm multiple myeloma? 9. Who will talk with me about next steps? A pathologist is a doctor who specializes in the study of tissue, blood or bone cells in a sample. They will review the biopsy sample under a microscope to determine whether or not cancer cells are present. Generally, these tests are used to confirm your diagnosis. If you do have a diagnosis of multiple myeloma, these tests will also help your doctor determine your overall prognosis and treatment options. Most people diagnosed with multiple myeloma are older than age 65. African Americans are diagnosed with multiple myeloma more than any other racial group. chapter 3 / Getting a proper Diagnosis 13

16 Getting a Second Opinion Cecilia, patient If someone came up to me and said, I ve been newly diagnosed with multiple myeloma, can you recommend the next two things I should do? I d say, Get a second opinion and a third. If you can go to a center that specializes in myeloma, go there. Some people find it difficult to speak to their doctor about getting a second opinion. A second opinion is often recommended before starting treatment, and in some cases, insurance companies require this step prior to starting treatment. A doctor should be comfortable with this request and should assist you in the process of seeking a second opinion. Consider a Second Opinion To confirm your diagnosis or treatment options If you are interested in a clinical trial If your insurance company requires it If you are interested in working with a different doctor 14 frankly speaking about cancer / multiple Myeloma

17 If MulTIPle Myeloma is found Finding the Right Doctor If multiple myeloma is diagnosed, the next step is to determine how far it has spread. This information may help direct treatment decisions. Multiple myeloma is not staged in the same way as other cancers. Your doctor may use one of two staging systems: the Durie Salmon Staging System and the International Staging System. These systems will help your doctor better understand your disease. It is helpful to find an experienced hematologist-oncologist to treat multiple myeloma: a doctor who specializes in cancers of the blood and related tissues including bone marrow. Ideally, you can work with someone who you can talk to and trust and who will accept your type of health insurance. You will work with this individual for a long period of time as they coordinate your care. Talk openly with your doctor and nurse to learn more about your disease because each person s multiple myeloma diagnosis is different. Before I was diagnosed I had hip pain for about four months, then I had an MRI. When the results came back my doctor said I had multiple myeloma. Victoria

18 There are several ways to find an expert in your area. Ask your primary care doctor for a referral. Most primary care doctors know one or more hematologist-oncologists with expertise in treating multiple myeloma. Ask your insurance company if that doctor is covered under your plan. Ask your health insurance company for a list of hematologist-oncologists in your area, and ask your primary care doctor if he/she can recommend one from the list. Search for hematologist-oncologists through the websites of professional organizations such as: American Society of Hematology Find a Hematologist: search by city and state to find a specialist in your local area Multiple Myeloma Research Consortium (MMRC) Participating Centers are among the nation s top cancer centers specializing in multiple myeloma National Cancer Institute Find a Cancer Center: search by state for comprehensive cancer centers It is always a good idea to interview a few doctors and collect a few opinions about how to treat your disease. Getting more than one opinion can provide you with additional information and options, access to a different medical facility and team, or access to a clinical trial. It may also give you confidence that you are already on the right track. American Society of Clinical Oncology Find an Oncologist: search for oncology specialty Leukemia/Lymphoma/ Myeloma/MDS 16 frankly speaking about cancer / multiple Myeloma

19 questions to ask your Health Care Team 1. How much experience do you have in treating multiple myeloma? 2. Do you stay up-to-date with the latest treatments and clinical trials for multiple myeloma? 3. Do you have access to clinical trials for multiple myeloma patients? 4. Do you accept my insurance (what is the cost for my care)? 5. Who can I talk with about my cost-ofcare questions? 6. Will you refer me to an oncology nurse and/or social worker to help me with information, side effect management and support? 7. What other support services are available to me and my family? 8. How often and when can I contact you or a nurse with questions? (Can I use or phone, or do you prefer only office visits?) 9. What other members of your team can I talk with as I go through treatment? I started off at a clinic where I didn t care for the oncologist; didn t like his personality or his diagnosis. Quite frankly, I opted to get a second opinion. Since then I have had a wonderful experience. My new oncologist is very caring, the medical staff takes their time, they educate us and they walk us through the steps. Bill, patient chapter 3 / Getting a proper Diagnosis 17

20 4 Multiple Treatment for Myeloma While there is no cure for multiple myeloma, there are treatments to help manage this disease. The goal of treatment is typically to prolong life and to improve one s quality of life for as long as possible, especially for someone who is otherwise healthy. This could be for many years. Learn about your options and talk with people who understand your needs and desires to help you make more thoughtful treatment decisions and feel a greater sense of control. Treatment for Multiple Myeloma Can: Slow the growth of myeloma cells Provide long periods of remission (when there are no signs of myeloma) Help you feel better when you have pain, fatigue or other symptoms 18 frankly speaking about cancer / multiple Myeloma

21 Often, doctors will recommend treatment based on your age, overall health, whether you have kidney disease (due to the myeloma or other reasons), heart disease, anemia or other illnesses. If you have had a remission and must be treated for multiple myeloma for a second or third time, this will also impact the treatment options available to you. There are many different treatment options for multiple myeloma, including chemotherapy, radiation therapy, bone marrow/stem cell transplant, and clinical trials. Many times treatments are used in combination or in sequence. Before making a decision about your course of treatment, it is helpful to know how each works, and to ask about common short and long-term side effects during and after treatment. It also helps to ask about managing potential side effects. Everyone experiences treatment differently, but it can help to feel prepared. You will receive a lot of information, and it can be overwhelming. It s often valuable to bring someone with you to appointments to help you sort through everything, take notes, and ask questions. You typically have time to make decisions, so it s okay to take the time you need. Managing the costs of care For information about how to navigate the expenses of cancer care, order or download CSC s Frankly Speaking About Cancer: Coping with the Cost of Care booklet at or chapter 4 / Treatment for Multiple Myeloma 19

22 questions to ask 1. What is the goal of this treatment? (Is it to achieve remission, manage symptoms, or something else?) 2. What are the chances that treatment will be effective for my disease? 3. What are the benefits and risks of each treatment option? 4. Are there any clinical trials that I should consider? 5. How, where and for how long is treatment given? 6. Will I need a caregiver? 7. What kind of side effects might I expect from each treatment, and for how long? 8. What can be done to manage potential side effects? 9. How will my treatment change over time? 10. Can you put me in touch with others who have received the treatment that you recommend for me? 11. What else can I do to prepare for treatment and stay healthy? 12. What should my family and friends expect? What help will I need during treatment? 13. If this treatment fails to control my cancer, do you recommend other treatment options or supportive services? 14. Who can I call or if I have questions along the way? 20 frankly speaking about cancer / multiple Myeloma

23 Who TreaTS MulTIPle Myeloma? approaches to treatment The specialist most directly involved with the treatment of multiple myeloma is a hematologist-oncologist. Depending upon your situation, your health care team may also include a radiation oncologist, and/or a stem cell transplant specialist. Other key people on your health care team are likely to include an oncology nurse, nurse or hospital navigator, and social worker. Each of these professionals can help guide you and your loved ones to helpful information and resources. If you do not meet these professionals upfront, ask to arrange for an appointment. Because you will likely be working with many different medical professionals, it helps to keep a list of your primary team with their contact information handy. It also helps to communicate with your team, to make sure everyone is up to date on your care. The choice of treatment(s) offered depends mainly on whether there are symptoms, and your overall health status. If you have multiple myeloma without symptoms (smoldering myeloma), you may not need cancer treatment right away. Your doctor will monitor your health closely (also called watchful waiting) so that treatment can start when you begin to have symptoms. If you have multiple myeloma with symptoms such as bone pain or kidney problems, you will likely receive a variety of treatments which include the use of cancerkilling drugs and therapies. Sometimes a stem cell transplant becomes part of your treatment plan. chapter 4 / Treatment for Multiple Myeloma 21

24 Watchful WaITIng When the approach of watchful waiting is taken, no drugs or other treatments are provided. Instead, your health care team will monitor the state of your disease with routine diagnostic tests. Watchful waiting can be an approach used for a number of years, and is common when cancer is growing slowly and not causing symptoms. QuesTIons to ask 1. If I wait before starting treatment, will the cancer be harder to control later? 2. What tests will I need if the cancer has advanced? How often should I be tested? 3. Between appointments, what problems should I be aware of and report to you? Help with Making Treatment Decisions Open to Options TM is a free telephone or in-person counseling program provided by trained professionals at the Cancer Support Community. It empowers you to: Communicate your concerns clearly Create a list of questions for your doctor or health care team that will help you address your specific needs Organize your questions for specialists to help you get the most helpful answers from the right people Call to schedule an appointment or visit 22 frankly speaking about cancer / multiple Myeloma

25 Treatment Options Many different types of drugs are used to control the growth and impact of multiple myeloma. Often, these drug categories are combined for treatment. The treatment plan used depends mostly on the patient s symptoms, age, health and likelihood of tolerating specific treatments. Treatment options can include a combination of chemotherapy, targeted therapies, steroids, immunomodulatory agents, radiation therapy, bone marrow/stem cell transplant, and clinical trials. Chemotherapy Chemotherapy drugs are used to kill fastgrowing cancer cells. Unfortunately, they also kill fast-growing healthy cells leading to common side effects such as hair loss and gastrointestinal problems. Chemotherapy can also affect blood counts which can lead to anemia, infection, bruising or bleeding. Some people experience allergic reactions which may lead doctors to change the course of treatment. Chemotherapy drugs used most often to treat multiple myeloma include: melphalan (Alkeran ), cyclophosphamide (Cytoxan ), and Liposomal doxorubicin (Doxil ). Targeted therapies Targeted therapies (also called Proteasome Inhibitors) are designed to interfere with a protein in myeloma cells which leads to cell death. Proteasome inhibitors such as bortezomib (Velcade ) or carfilzomib (Kyprolis TM ) are more targeted than traditional chemotherapy, but may still cause side effects such as nausea, gastrointestinal problems, and possibly nerve damage causing numbness. chapter 4 / Treatment for Multiple Myeloma 23

26 Steroids Steroids, most commonly dexamethasone (Decadron ) and prednisone, are used to trigger the death of myeloma cells and to help decrease the side effects (nausea and vomiting) that other chemotherapy drugs may cause. Most of the side effects caused by steroid use (including increased appetite and problems sleeping) go away after the drug is stopped. Some steroids are also used to treat the inflammation caused by multiple myeloma. Immunomodulatory Agents These drugs are intended to help the immune system fight cancer, but it is not clear how these agents really work. Currently, there are three immunomodulatory agents used to treat multiple myeloma, as others are being developed and tested. Thalidomide (Thalomid ), lenalidomide (Revlimid ) and pomalidomide (Pomalyst ). These drugs are oral (taken by mouth) and can cause side effects such as lowering of the blood counts, fatigue, muscle cramps, neuropathy (painful nerve damage), constipation or diarrhea. Radiation Therapy Radiation therapy uses high powered x-rays to target tumors and disrupt the growth of cancer cells. It is most often used to shrink a tumor within a bone in order to relieve bone pain. External beam radiation therapy may be used to treat a single plasmacytoma or it may be used in combination with other therapies for multiple myeloma. Radiation may also be used as an emergency treatment to prevent paralysis if myeloma so severely weakens the spine (vertebral bones) that they begin to collapse and/or pinch the spinal cord. Bone Marrow/Stem Cell Transplant Bone marrow/stem cell transplant is a standard treatment for relatively healthy patients with multiple myeloma. A stem cell transplant involves the collection of healthy stem cells, the use of chemotherapy to kill cancer cells, then the reinfusion of stem cells so that healthy blood cells can form. Studies have shown this treatment can increase patient survival, better than traditional 24 frankly speaking about cancer / multiple Myeloma

27 A stem cell transplant is not a walk in the park, but you do it because you think it will help. You have to be a candidate first of all, and a combination of things must fall into place, and then you hope for the best. It was 30 days in the hospital for me. But it really did help. I m doing well. Avi, patient chemotherapy. This process is typically done in the hospital (inpatient) with an average stay of about 21 days; however, some doctors are able to offer this as an outpatient procedure. Two types of transplant are considered Autologous and Allogeneic: Autologous stem cell transplant This type of transplant uses the patient s own stem cells. To collect the patient s stem cells, a process called leukapheresis is used where some blood is removed from the patient and stem cells are extracted. Then high doses of chemotherapy destroy cancer cells in the patient s bone marrow. The stem cells are re-infused and white blood cell stimulants are used to improve the stem cells ability to replenish the bone marrow. Autologous stem cell transplants are commonly used with multiple myeloma patients who are otherwise healthy. Often, patients recover after the transplant in the hospital setting for days, but new advances are allowing some patients to recover outside of the hospital setting (as an outpatient). Allogeneic transplant This type of transplant uses the healthy stem cells from a close family member or matching donor to fight the cancer. The process of using chapter 4 / Treatment for Multiple Myeloma 25

28 chemotherapy to destroy cancer in bone marrow then replacing the marrow with healthy stem cells is similar. However, this transplant is more risky than an autologous stem cell transplant and is less commonly used because the donor s blood cells must match the cells of the patient. This transplant requires the patient to be healthy to withstand the impact of this treatment. The hospital stay for this procedure will be longer. QuesTIons to ask About Treatment 1. Which treatment(s) do you recommend? What will the treatment do? 2. When will treatment start? When will it end? How often and where? 3. Do you recommend a stem cell transplant - if so, what should I do to prepare? How will I feel during and after this treatment? 4. Do I need a caregiver during and after treatment? If so, for how long? 5. What can I do to feel better during recovery? 6. What side effects should I anticipate? Can I prevent or treat any of these side effects? 7. Will there be long-lasting side effects? What can I do about them? 8. How will I know if my treatment is working? 9. How often will I need checkups? 10. What information do you have so I can learn more about this treatment? 26 frankly speaking about cancer / multiple Myeloma

29 Clinical Trials Clinical trials are carefully monitored research studies used to test promising new drugtreatment approaches, or to compare treatment approaches. Participating in a clinical trial can give you the opportunity to be among the first to benefit from the most advanced treatment available. Because doctors are still trying to find more effective treatments for multiple myeloma, clinical trials are an important option to consider. If you are interested, ask your doctor about trials you might qualify for. Your health care team should make you aware of any current clinical trials that are being offered. information about clinical trials To search for information about clinical trials for multiple myeloma patients: The Leukemia & Lymphoma Society s clinical trials matching service Cancer Support Community s clinical trials matching service (search clinical trials ) National Cancer Institute s information service I have done two clinical trials already with some of the new drugs. I want to do anything that will help with my multiple myeloma. Thomas, patient chapter 4 / Treatment for Multiple Myeloma 27

30 Types of Clinical Trials Type of Trial Prevention trials Screening and early detection trials Diagnostic trials Treatment (or therapeutic) trials Quality of life and supportive care trials study goals What can prevent cancer from developing? What new screening and detection methods can be used to identify cancer in people, before it spreads and before symptoms? How can new tests identify a cancer earlier and more accurately? What new treatments can be used to stop or cure cancer? What can be done to improve the overall well-being of people who have cancer? What can be done to make people who have cancer more comfortable? 28 frankly speaking about cancer / multiple Myeloma

31 Follow-up Care Treatment for multiple myeloma is something that you will manage over the course of your life. You may receive treatment, then go into remission, then find that you need additional treatment in the future. You may also be kept on maintenance therapy. Even when the cancer seems to have been destroyed, multiple myeloma will eventually return. It is not helpful to think about the return of cancer, but it is helpful to stay aware of your health and do what you can to maintain a high quality of life. Regular checkups, including blood tests, x-rays and bone marrow biopsies will keep track of your health, and ensure that changes are noted and treated. If you have any health problems between checkups, contact your doctor. I told my doctor I wanted to see my grandchildren graduate from high school when I was diagnosed. That was six, seven years ago now. Well, I have a new grandchild who was born two weeks ago, I told him to stay on his toes because my expectations just increased! Nick, patient

32 5 and Managing Symptoms Side Effects Listen to your body. Keep a journal of how you feel physically and emotionally. Keeping notes can help you keep track of how you re doing over time and of symptoms or side effects that may come and go. This can help you work closely with your doctor to manage the side effects that you experience from multiple myeloma or the treatment of it, and ensure that your questions are answered. Managing Side Effects For more information about managing side effects from cancer treatment, order or download CSC s Frankly Speaking About Cancer Treatment: Take Control of Side Effects with Medicine, Mind and Body booklet at or This booklet includes a journal to help you track side effects and keep notes for yourself and your health care team. 30 frankly speaking about cancer / multiple Myeloma

33 Pain Pain can result from the myeloma itself, from nerve damage because of the disease or its treatment, or can occur after a bone marrow biopsy. It will be important to work closely with your health care team to explain how you feel so they can suggest ways to relieve or reduce your pain. Think of your pain in terms of a scale from 0 to 10: with no pain having a score of zero, to extreme pain having a high score of 9 to 10. You ll also want to track the location, the frequency or duration of when it occurs, the type of pain (is it burning or stabbing? sharp or dull?), and what makes it change (does medication relieve the pain?). TIPs to relieve pain Don t ignore pain. Keep a journal to track it and let your doctor and nurse know about it. Ask if the use of heat or cold would help. Ask about drugs that fight pain anywhere in the body. Ask about a brace that may relieve pain in the neck or back. Ask if radiation therapy aimed at the bone might help reduce pressure. Ask if surgery to fix a compressed (squeezed) spinal cord may help. Information about Pain Relief For more information about pain relief, read: Pain Control by the National Cancer Institute Pain Management Facts by The Leukemia & Lymphoma Society chapter 5 / Managing Side Effects 31

34 Improving Bone Strength Some people get pain relief from complementary medical techniques such as Qi Gong or acupuncture. Only consider these techniques after talking with your doctor. You may also benefit from strategies for relaxation, such as deep and slow breathing, meditation or hypnosis. Ask your health care team for recommendations; many treatment facilities have these resources on site. If you are feeling depressed about your pain, talking with an oncology social worker or an experienced psychologist can be helpful. Do not keep your pain to yourself. Find relief. I had to readjust the way I move. I can t turn real quickly because I watch the way I treat my bones. I try to protect myself from fractures. Bone weakness is a common problem for people with multiple myeloma. Regular physical fitness, including daily walks, yoga, or more strenuous exercise (if comfortable and approved by your doctor) will help to keep bones strong, and help you feel less frail. Bisphosphonates are commonly used drugs, such as pamidronate (Aredia ) and zoledronic acid (Zometa ), to maintain bone strength by slowing the way multiple myeloma cells dissolve and weaken bones. Treatment with bisphosphonates helps to prevent further bone damage, but it has been found to cause potentially severe dental problems. It s key to inform your dentist about your use of bisphosphonates, and to have a dental exam before starting these drugs. Maintaining good oral health while using these drugs is important. If a tooth or gum infection occurs, your doctor may want to stop bisphosphonate treatment. Cathy, patient 32 frankly speaking about cancer / multiple Myeloma

35 Anemia Myeloma and its treatment can lead to anemia, which means that your red blood cells aren t carrying enough oxygen through your body. This makes you feel very tired. Other symptoms of anemia include: shortness of breath, feeling your heart pound, feeling dizzy or faint, or having difficulty concentrating. If you are concerned about anemia, there are medications that can help, or sometimes a blood transfusion is recommended. Your health care team will routinely assess if you are experiencing a low red blood cell count through blood tests. TIPs to Manage Anemia Get plenty of rest. Ask for help from friends or family when your energy is low. Eat a nutritious diet with iron-rich foods and drink plenty of fluid. Stand slowly to avoid feeling dizzy after sitting or resting. Ask your doctor if medication would help. Keep track of how you feel, and tell your health care team when you re too tired to accomplish daily tasks. chapter 5 / Managing Side Effects 33

36 InfecTIons When living with multiple myeloma you may experience very low white blood cell counts due to the disease and its treatment, and can get infections easily. Your health care team may advise you to stay away from crowds and from people with colds and other contagious diseases. If an infection develops, it can be serious and should be treated promptly. I try to stay away from situations where there are a lot of germs, because my immune system isn t very strong. I know that if you sneeze on me, then I m down for the count, so I m very careful with that. Cathy, patient and 16 year survivor Tips to prevent infection Wash your hands frequently and thoroughly (15 seconds of scrubbing) before eating, after the bathroom, after a sneeze or cough. Use hand sanitizer when washing is not convenient. Avoid things that may cause cuts, and use antiseptic immediately if you get a cut. Keep your mouth clean with regular teeth brushing and mouthwash. Avoid eating and touching uncooked meat, chicken, eggs and seafood. Avoid people with colds. Ask about vaccinations for things like the flu or pneumonia. Remember that you should not receive any vaccinations unless your oncologist is aware and provides approval. Ask about medications to increase your white blood cells. Tell your health care team about signs and symptoms of infection that you experience. This is not the time to watch and wait. 34 frankly speaking about cancer / multiple Myeloma

37 kidney Problems Some people with multiple myeloma may develop kidney problems due to the disease, the treatment for the disease, or a combination of both. The kidneys help regulate the body s hydration and water balance, and are responsible for getting rid of the body s waste. When the kidneys can no longer do this, excess fluid can build up in tissues (edema) and you may notice swollen feet or ankles or be short of breath if fluid builds in the lungs. If kidney problems are severe, you may need dialysis, which artificially removes waste and excess water from the blood. For people with kidney failure on dialysis, maintaining the proper fluid level in their body is critical. There are two types of dialysis. Hemodialysis, where a patient s blood flows through a filter that removes wastes and extra fluids, and then the clean blood is returned to the body. Peritoneal dialysis, where a catheter fills a patient s abdomen with a dialysis solution that draws wastes and extra fluids from the blood into the abdominal cavity the wastes and fluids are then drained from the body. To protect your kidneys, or preserve your health on dialysis, lifestyle and diet changes help. Eating fruits, vegetables and whole grains is important to the health of your body and your kidneys. Aim to reduce salt, animal protein, dairy fat, processed foods. Talk to your nurse about more healthy eating and lifestyle tips right for you. For more healthy eating tips, see p. 40. chapter 5 / Managing Side Effects 35

38 Too Much Calcium in the Blood Maintain a healthy blood pressure, cholesterol level, blood-glucose level. Maintain a healthy body weight. Try to exercise daily. Walking is a great option. Keep hydrated within recommended daily amounts. Drink water and juice, but avoid alcohol and caffeinated beverages. If you re thirsty but were told not to drink more: suck on a lemon, ice chips, or chew gum. Take the medications prescribed to you in the proper dose, and learn why they may help. When calcium leaves the bones and enters the bloodstream due to multiple myeloma, you can feel badly in many ways. You may lose your appetite, or feel nauseated, restless or confused. A high calcium level can also make you very tired, weak, dehydrated, and thirsty. If you have a high level of calcium in your blood, you will be asked to drink a lot of fluids and take medications that lower calcium levels in your blood. These things can relieve your discomfort. A person with serious end-stage kidney problems may need a kidney transplant. This is a very challenging process for someone whose immune system is compromised from multiple myeloma. You and your doctor will discuss the potential benefits versus risks of a kidney transplant if this is recommended. 36 frankly speaking about cancer / multiple Myeloma

39 Amyloidosis side Effects of Chemotherapy Some people with myeloma may develop amyloidosis, which is the collection of abnormal proteins in tissues of the body. For example, proteins can build up in the heart, causing chest pain and swollen feet. There are drugs to treat amyloidosis, and supportive measures that could help. Side effects from chemotherapy often result from damage to healthy cells. Some examples include damage to the cells in your mouth (resulting in mouth sores), hair follicles (resulting in hair loss), and in your gastrointestinal tract (resulting in vomiting, diarrhea, constipation). Because previously healthy cells can usually repair themselves after chemotherapy ends, many of these side effects are temporary and can be managed. Side Effects of Drug TheraPIes Every drug causes a unique set of side effects. You can talk with your oncology nurse about any side effect you may experience based upon your treatment plan. If you are enrolled in a clinical trial, the research nurse will talk with you about side effects. Ask for information about the best way to manage potential problems even before they begin so you can feel prepared and avoid difficulties. I ve learned to live with things like cramps and chemo brain. I don t know if it s the drugs or the journey, but I ve learned to deal with it. Mike, patient chapter 5 / Managing Side Effects 37

40 side Effects of Bone Marrow/sTem Cell Transplant There are several potential risks from a major procedure such as a bone marrow/stem cell transplant, but also many longer-term benefits. It will be critical to talk with your doctor and nurse about what you should expect from the procedure, how to prepare for it, what recovery will be like, and about side effects to plan for and manage. Tips for receiving a stem cell transplant Read all materials given to you by your health care team about what to expect. Suck on ice before receiving chemotherapy, to keep your mouth moist and cool and prevent chemo-related problems such as mouth sores or tongue swelling. If you are in the hospital while you recover, you can stay in touch with friends and family with Skype, texting, or other technologies. Ask your doctor if visitors are allowed. Learn whether or not you will need the help of a caregiver during your recovery period, and if there is a social worker or case manager who can help you. Learn whether or not you will need to take time off work (and for how long). Take naps and be patient as your level of energy builds. As your recovery progresses, start slowly with light exercises in your home, build up to walks, then aim to increase your exercise and strength as you feel capable. Keep antibacterial soap handy for visitors and friends. Eat well-cooked foods until you are told that it s ok to eat raw foods as well. Learn if you should follow the neutropenic diet (eating well cooked foods, pasteurized dairy products, and purified water to protect yourself from bacteria and fungi in food while your white blood cell counts are low). 38 frankly speaking about cancer / multiple Myeloma

41 General Strategies for Wellness Take good care of yourself: Good nutrition maintains energy, strengthens the immune system, and can decrease side effects. Adequate fluid intake avoids dehydration, prevents constipation, and decreases fatigue. Try to do some physical activity every day. Exercise combats fatigue, promotes restful sleep, and can elevate your mood. Talk with your health care team about what exercises may help you. Washing your hands decreases the risk of infection and keeps you healthy. Relaxation techniques such as yoga, meditation and deep breathing help to reduce stress and increase energy. Participation in a support group can help you understand and manage your feelings and provide an opportunity for you to connect with others facing cancer. Being empowered throughout your cancer experience means asking questions, being informed, and making choices and decisions about your treatment and care that are right for you. I have to build my immune system. I went to a nutritionist and she gave me great information about supplements and how to keep up with good nutrition. It really helps me. Cathy, patient chapter 5 / Managing Side Effects 39

42 Healthy EaTIng Tips HEALTHY EATING TIPS Great foods to eat colorful vegetables: dark green, deep yellow, orange, red, or purple lightly colored vegetables: cauliflower, mushrooms, onions, cucumber, lettuce starchy vegetables: squash, potatoes, corn fresh and dried fruits, avocado nuts, seeds and oats tofu and beans Stay Hydrated water fruit juice coconut, almond, or rice milk decaffeinated tea fruit smoothies Foods to LimIT cured meats red meat alcohol sugary sweets processed foods with food coloring and saturated fats fried foods cheese 40 frankly speaking about cancer / multiple Myeloma

43 6 Moving Forward Because multiple myeloma has no cure, it may require changes in your routine or in how you care for yourself, as well as what you need from others in your life. It does not, however, define you. You are not your disease. During or after treatment, you may still feel anxious about your health. This is especially true when you: Feel symptoms, even when they turn out to be those of the common cold Need follow-up visits and must return to your doctor s office or the hospital Reach a five, ten or 15-year anniversary of being diagnosed or being in remission chapter 6 / Moving Forward 41