The facts about Multiple Myeloma.
Multiple myeloma starts in plasma cells, a type of white blood cell. It’s also called plasma cell myeloma. In 2012, about 22,000 Americans will be diagnosed with this disease.
This booklet is only about multiple myeloma. It is not about bone cancer. Although multiple myeloma affects the bones, it begins in plasma cells. Bone cancer begins in bone cells. It’s diagnosed and treated differently from multiple myeloma.
Also, this booklet is not about plasmacytoma (a collection of abnormal plasma cells that forms a single tumor) and other types of plasma cell tumors.
This booklet tells about diagnosis, treatment options, and tests the doctor may give you during follow-up visits. It also tells about supportive care before, during, or after treatment. Learning about the medical care for multiple myeloma can help you take an active part in making choices about your care.
This booklet has lists of questions that you may want to ask your doctor. Many people find it helpful to take a list of questions to a doctor visit. To help remember what your doctor says, you can take notes or ask whether you may use a tape recorder. You may also want to have a family member or friend go with you when you talk with the doctor – to take part in the discussion, to take notes, or just to listen.
What is Multiple Myeloma?
Multiple myeloma is a type of cancer. Cancer is a group of many related diseases. Myeloma is a cancer that starts in plasma cells, a type of white blood cell. It’s the most common type of plasma cell cancer.
Normal Blood Cells
Most blood cells develop from cells in the bone marrow called stem cells. Bone marrow is the soft material in the center of most bones.
Stem cells mature into different types of blood cells. Each type has a special job:
- White blood cells help fight infection. There are several types of white blood cells.
- Red blood cells carry oxygen to tissues throughout the body.
- Platelets help form blood clots that control bleeding.
Plasma cells are white blood cells that make
. Antibodies are part of the
. They work with other parts of the immune system to help protect the body from germs and other harmful substances. Each type of plasma cell makes a different antibody.
Normal plasma cells help protect the body from germs and other harmful substances.
Myeloma, like other cancers, begins in cells. In cancer, new cells form when the body doesn’t need them, and old or damaged cells don’t die when they should. These extra cells can form a mass of tissue called a growth or tumor.
Myeloma begins when a plasma cell becomes abnormal. The abnormal cell divides to make copies of itself. The new cells divide again and again, making more and more abnormal cells. These abnormal plasma cells are called myeloma cells.
In time, myeloma cells collect in the bone marrow. They may damage the solid part of the bone. When myeloma cells collect in several of your bones, the disease is called “multiple myeloma.” This disease may also harm other tissues and organs, such as the kidneys.
Myeloma cells make antibodies called M proteins and other proteins. These proteins can collect in the blood, urine, and organs.
Myeloma cell (abnormal plasma cell) making M proteins.
Risk Factors for Multiple Myeloma
No one knows the exact causes of multiple myeloma. Doctors seldom know why one person
develops this disease and another doesn’t. However, we do know that multiple myeloma isn’t contagious. You cannot catch it from another person.
Research has shown that certain risk factors increase the chance that a person will develop this disease. Studies have found the following risk factors for multiple myeloma:
- Age over 65: Growing older increases the chance of developing multiple myeloma. Most people with myeloma are diagnosed after age 65. This disease is rare in people younger than 35.
- Race: The risk of multiple myeloma is highest among African Americans and lowest among Asian Americans. The reason for the difference between racial groups is not known.
- Being a man: In 2011, about 11,400 men and 9,100 women will be diagnosed with multiple myeloma in the United States. It is not known why more men are diagnosed with the disease.
- Personal history of monoclonal gammopathy of undetermined significance (MGUS): MGUS is a benign condition in which abnormal plasma cells make M proteins. Usually, there are no symptoms, and the abnormal level of M protein is found with a blood test. Sometimes, people with MGUS develop certain cancers, such as multiple myeloma. There is no treatment, but people with MGUS get regular lab tests (every 1 or 2 years) to check for a further increase in the level of M protein. They also get regular exams to check for the development of symptoms.
- Family history of multiple myeloma: Studies have found that a person’s risk of multiple myeloma may be higher if a close relative had the disease.
Many other suspected risk factors are under study. Researchers have studied whether being exposed to certain chemicals or germs (especially viruses), having alterations in certain genes, eating certain foods, or being obese increases the risk of developing multiple myeloma. Researchers continue to study these and other possible risk factors.
Having one or more risk factors does not mean that a person will develop myeloma. Most people who have risk factors never develop cancer.
Symptoms of Multiple Myeloma
Common symptoms of multiple myeloma include:
- Bone pain, usually in the back and ribs
- Broken bones, usually in the spine
- Feeling weak and very tired
- Feeling very thirsty
- Frequent infections and fevers
- Weight loss
- Nausea or constipation
- Frequent urination
Most often, these symptoms are not due to cancer. Other health problems may also cause these symptoms. Only a doctor can tell for sure. Anyone with these symptoms should tell the doctor so that problems can be diagnosed and treated as early as possible.
How is Multiple Myeloma Diagnosed?
Doctors sometimes find multiple myeloma after a routine blood test. More often, doctors suspect multiple myeloma after an x-ray for a broken bone. Usually though, patients go to the doctor because they are having other symptoms.
To find out whether such problems are from multiple myeloma or some other condition, your doctor may ask about your personal and family medical history and do a physical exam. Your doctor also may order some of the following tests:
- Blood tests: The lab does several blood tests:
- Multiple myeloma causes high levels of proteins in the blood. The lab checks the levels of many different proteins, including M protein and other immunoglobulins (antibodies), albumin, and beta-2-microglobulin.
- Myeloma may also cause anemia and low levels of white blood cells and platelets. The lab does a complete blood count to check the number of white blood cells, red blood cells, and platelets.
- The lab also checks for high levels of calcium.
- To see how well the kidneys are working, the lab tests for creatinine.
- Urine tests: The lab checks for Bence Jones protein, a type of M protein, in urine. The lab measures the amount of Bence Jones protein in urine collected over a 24-hour period. If the lab finds a high level of Bence Jones protein in your urine sample, doctors will monitor your kidneys. Bence Jones protein can clog the kidneys and damage them.
- X-rays: You may have x-rays to check for broken or thinning bones.An x-ray of your whole body can be done to see how many bones could be damaged by the myeloma.
- Biopsy: Your doctor removes tissue to look for cancer cells. A biopsy is the only sure way to know whether myeloma cells are in your bone marrow. Before the sample is taken, local anesthesia is used to numb the area. This helps reduce the pain. Your doctor removes some bone marrow from your hip bone or another large bone. A pathologist uses a microscope to check the tissue for myeloma cells. There are two ways your doctor can obtain bone marrow. Some people will have both procedures during the same visit:
- Bone marrow aspiration: The doctor uses a thick, hollow needle to remove samples of bone marrow.
- Bone marrow biopsy: The doctor uses a very thick, hollow needle to remove a small piece of bone and bone marrow.
You may want to ask your doctor these questions before having a bone marrow aspiration or biopsy:
- Will you remove the sample of bone marrow from the hip or from another bone?
- Where will I go for this procedure?
- Will I have to do anything to prepare for it?
- How long will it take? Will I be awake?
- Will it hurt? What will you do to prevent or control the pain?
- Are there any risks? What are the chances of infection or bleeding after the procedure?
- How long will it take me to recover?
- How soon will I know the results? Who will explain them to me?
- If I do have multiple myeloma, who will talk to me about next steps? When?
Staging of Multiple Myeloma
If the biopsy shows that you have multiple myeloma, your doctor needs to learn the extent (stage) of the disease to plan the best treatment. Staging may involve having more tests:
- Blood tests: For staging, the doctor considers the results of blood tests, including albumin and beta-2-microglobulin.
- CT scan: An x-ray machine linked to a computer takes a series of detailed pictures of your bones.
- MRI: A powerful magnet linked to a computer is used to make detailed pictures of your bones.
Doctors may describe multiple myeloma as smoldering, Stage I, Stage II, or Stage III. The stage takes into account whether the cancer is causing problems with your bones or kidneys. Smoldering multiple myeloma is early disease without any symptoms. For example, there is no bone damage. Early disease with symptoms (such as bone damage) is Stage I. Stage II or III is more advanced, and more myeloma cells are found in the body.
How to Treat Multiple Myeloma?
People with multiple myeloma have many treatment options. The options are watchful waiting, induction therapy, and stem cell transplant. Sometimes a combination of methods is used.
Radiation therapy is used sometimes to treat painful bone disease. It may be used alone or along with other therapies.
The choice of treatment depends mainly on how advanced the disease is and whether you have symptoms. If you have multiple myeloma without symptoms (smoldering myeloma), you may not need cancer treatment right away. The doctor monitors your health closely (watchful waiting) so that treatment can start when you begin to have symptoms.
If you have symptoms, you will likely get induction therapy. Sometimes a stem cell transplant is part of the treatment plan.
When treatment for myeloma is needed, it can often control the disease and its symptoms. People may receive therapy to help keep the cancer in remission, but myeloma can seldom be cured. Because standard treatment may not control myeloma, you may want to talk to your doctor about taking part in a clinical trial. Clinical trials are research studies of new treatment methods.
Your doctor can describe your treatment choices, the expected results, and the possible side effects. You and your doctor can work together to develop a treatment plan that meets your needs.
Your doctor may refer you to a specialist, or you may ask for a referral. Specialists who treat multiple myeloma include hematologists and medical oncologists. Your health care team may also include an oncology nurse and a registered dietitian.
Before treatment starts, ask your health care team to explain possible side effects and how treatment may change your normal activities. Because cancer treatments often damage healthy cells and tissues, side effects are common. Side effects may not be the same for each person, and they may change from one treatment session to the next.
You may want to ask your doctor these questions before you begin treatment:
- What stage of myeloma do I have?
- Is the disease affecting my kidneys?
- How do I get a copy of the report from the pathologist?
- What are my treatment choices? Which do you recommend for me? Why?
- Will I have more than one kind of treatment? How will my treatment change over time?
- What are the expected benefits of each kind of treatment?
- What are the risks and possible side effects of each treatment? What can we do to control the side effects?
- What can I do to prepare for treatment?
- Will I need to stay in the hospital? If so, for how long?
- What is the treatment likely to cost? Will my insurance cover the cost?
- How will treatment affect my normal activities?
- Would a clinical trial be right for me? Can you help me find one?
- How often should I have checkups?
People with smoldering myeloma or Stage I myeloma may be able to put off having cancer treatment. By delaying treatment, you can avoid the side effects of treatment until you have symptoms.
If you and your doctor agree that watchful waiting is a good idea, you will have regular checkups (such as every 3 months). You will receive treatment if symptoms occur.
Although watchful waiting avoids or delays the side effects of cancer treatment, this choice has risks. In some cases, it may reduce the chance to control myeloma before it gets worse.
You may decide against watchful waiting if you don’t want to live with untreated myeloma. If you choose watchful waiting but grow concerned later, you should discuss your feelings with your doctor. Another approach is an option in most cases.
You may want to ask your doctor these questions before choosing watchful waiting:
- If I choose watchful waiting, can I change my mind later on?
- Will the cancer be harder to treat later?
- How often will I have checkups?
- Between checkups, what problems should I tell you about?
Many different types of drugs are used to treat myeloma. People often receive a combination of drugs, and many different combinations are used to treat myeloma.
Each type of drug kills cancer cells in a different way:
- Chemotherapy: Chemotherapy kills fast-growing myeloma cells, but the drug can also harm normal cells that divide rapidly
- Targeted therapy: Targeted therapies use drugs that block the growth of myeloma cells. The targeted therapy blocks the action of an abnormal protein that stimulates the growth of myeloma cells.
- Steroids: Some steroids have antitumor effects. It is thought that steroids can trigger the death of myeloma cells. A steroid may be used alone or with other drugs to treat myeloma.
You may receive the drugs by mouth or through a vein (IV). The treatment usually takes place in an outpatient part of the hospital, at your doctor’s office, or at home. Some people may need to stay in the hospital for treatment.
The side effects depend mainly on which drugs are given and how much:
- Blood cells: When a drug used for myeloma treatment lowers the levels of healthy blood cells, you’re more likely to get infections, bruise or bleed easily, and feel very weak and tired. Your health care team will check for low levels of blood cells. If your levels are low, your health care team may stop therapy for a while or reduce the dose of drug. There are also medicines that can help your body make new blood cells.
- Cells in hair roots: Chemotherapy may cause hair loss. If you lose your hair, it will grow back, but it may be somewhat different in color and texture.
- Cells that line the digestive tract: Chemotherapy and targeted therapy can cause poor appetite, nausea and vomiting, diarrhea, constipation, or mouth and lip sores. Ask your health care team about medicines and other ways to help you cope with these problems.
The drugs used for myeloma may also cause dizziness, drowsiness, numbness or tingling in hands or feet, and low blood pressure. Most of these problems go away when treatment ends.
You may want to ask your doctor these questions before having induction therapy:
- Which drugs will I get? What will the treatment do?
- When will treatment start? When will it end? How often will I have treatments?
- Where will I go for treatment? Will I have to stay in the hospital?
- Will I have side effects during treatment? What side effects should I tell you about? Can I prevent or treat any of these side effects?
- Will there be lasting side effects? How long will they last? What can I do about them?
- How often will I need checkups?
Stem Cell Transplant
Many people with multiple myeloma may get a stem cell transplant. A stem cell transplant allows you to be treated with high doses of drugs. The high doses destroy both myeloma cells and normal blood cells in the bone marrow. After you receive high-dose treatment, you receive healthy stem cells through a vein. (It’s like getting a blood
.) New blood cells develop from the transplanted stem cells. The new blood cells replace the ones that were destroyed by treatment.
Stem cell transplants take place in the hospital. Some people with myeloma have two or more transplants.
Stem cells may come from you or from someone who donates their stem cells to you:
- From you: An autologous stem cell transplant uses your own stem cells. Before you get the high-dose chemotherapy, your stem cells are removed. The cells may be treated to kill any myeloma cells present. Your stem cells are frozen and stored. After you receive high-dose chemotherapy, the stored stem cells are thawed and returned to you.
- From a family member or other donor: An allogeneic stem cell transplant uses healthy stem cells from a donor. Your brother, sister, or parent may be the donor. Sometimes the stem cells come from a donor who isn’t related. Doctors use blood tests to be sure the donor’s cells match your cells. Allogeneic stem cell transplants are under study for the treatment of multiple myeloma.
- From your identical twin: If you have an identical twin, a syngeneic stem cell transplant uses stem cells from your healthy twin.
There are two ways to get stem cells for people with myeloma. They usually come from the blood (peripheral blood stem cell transplant). Or they can come from the bone marrow (bone marrow transplant).
After a stem cell transplant, you may stay in the hospital for several weeks or months. You’ll be at risk for infections because of the large doses of chemotherapy you received. In time, the transplanted stem cells will begin to produce healthy blood cells.
You may want to ask your doctor these questions before having a stem cell transplant:
- What kind of stem cell transplant will I have? If I need a donor, how will we find one?
- How long will I be in the hospital? Will I need special care? How will I be protected from germs? Will my visitors have to wear a mask? Will I?
- What care will I need when I leave the hospital?
- How will we know if the treatment is working?
- What are the risks and the side effects? What can we do about them?
- What changes in normal activities will be necessary?
- What is my chance of a full recovery? How long will that take?
- How often will I need checkups?
Before starting treatment, you might want a second opinion about your diagnosis and treatment plan. Some people worry that the doctor will be offended if they ask for a second opinion. Usually the opposite is true. Most doctors welcome a second opinion. And many health insurance companies will pay for a second opinion if you or your doctor requests it.
If you get a second opinion, the doctor may agree with your first doctor’s diagnosis and treatment plan. Or the second doctor may suggest another approach. Either way, you have more information and perhaps a greater sense of control. You can feel more confident about the decisions you make, knowing that you’ve looked at your options.
It may take some time and effort to gather your medical records and see another doctor. In most cases, it’s not a problem to take several weeks to get a second opinion. The delay in starting treatment usually won’t make treatment less effective. To make sure, you should discuss this delay with your doctor. Some people with multiple myeloma need treatment right away.
There are many ways to find a doctor for a second opinion. You can ask your doctor, a local or state medical society, a nearby hospital, or a medical school for names of specialists.
Nonprofit groups with an interest in multiple myeloma may be of help.
Supportive Care for Multiple Myeloma
Multiple myeloma and its treatment can lead to other health problems. At any stage of the disease, you can have supportive care.
Supportive care is treatment to prevent or fight infections, to control pain and other symptoms, to relieve the side effects of therapy, and to help you cope with the feelings that a diagnosis of cancer can bring. You may receive supportive care to prevent or control these problems and to improve your comfort and quality of life during treatment.
Because people with multiple myeloma get infections very easily, you may receive
and other drugs.
Some people receive vaccines against the flu and pneumonia. You may want to talk with your health care team about when to get certain vaccines.
The 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. You may need to stay in the hospital for treatment.
Myeloma and its treatment can lead to anemia, which may make you feel very tired. Drugs or a blood transfusion can help with this problem.
Multiple myeloma often causes bone pain. Your health care provider can suggest ways to relieve or reduce pain:
- A brace that relieves pain in the neck or back
- Drugs that fight pain anywhere in the body
- Radiation therapy from a large machine aimed at the bone
- Surgery to fix a compressed (squeezed) spinal cord
Some people get pain relief from massage or
when used along with other approaches. Also, you may learn relaxation techniques such as listening to slow music or breathing slowly and comfortably.
Myeloma cells keep new bone cells from forming, and bones become thin wherever there are myeloma cells. Your doctor may give you drugs to prevent bone thinning and help reduce the risk of fractures. Physical activity, such as walking, also helps keep bones strong.
Too Much Calcium in the Blood
Multiple myeloma may cause calcium to leave the bones and enter the bloodstream. If you have a very high level of calcium in your blood, you may lose your appetite. You also may feel nauseated, restless, or confused. A high calcium level can also make you very tired, weak,
, and thirsty. Drinking a lot of fluids and taking drugs that lower the calcium in the blood can be helpful.
Some people with multiple myeloma have kidney problems. If the problems are severe, a person may need
. Dialysis removes wastes from the blood. A person with serious kidney problems may need a kidney transplant.
Some people with myeloma develop
. This problem is caused by abnormal proteins collecting in tissues of the body. The buildup of proteins can cause many problems, some of them severe. For example, proteins can build up in the heart, causing chest pain and swollen feet. There are drugs to treat amyloidosis.
Nutrition and Physical Activity
It’s important for you to take care of yourself by eating well, drinking plenty of fluids, and staying as active as you can.
You need the right amount of calories to maintain a good weight. You also need enough protein to keep up your strength. Eating well may help you feel better and have more energy.
However, you may not feel like eating during treatment or soon after. You may be uncomfortable or tired. You may find that foods do not taste as good as they used to. In addition, the side effects of treatment (such as poor appetite, nausea, vomiting, or mouth sores) can make it hard to eat well. Your doctor, a registered dietitian, or another health care provider can suggest ways to deal with these problems.
Research shows that people with cancer feel better when they are active. Walking, yoga, swimming, and other activities can keep you strong and increase your energy. Exercise may reduce nausea and pain and make treatment easier to handle. It also can help relieve stress. Whatever physical activity you choose, be sure to talk to your doctor before you start. Also, if your activity causes you pain or other problems, be sure to let your doctor or nurse know about it.
Follow-up Care for Multiple Myeloma
You’ll need regular checkups after treatment for multiple myeloma. Checkups help ensure that any changes in your health are noted and treated if needed. If you have any health problems between checkups, you should contact your doctor.
Your doctor will check for return of cancer. Even when the cancer seems to have been completely destroyed, the disease sometimes returns because undetected myeloma cells remained somewhere in the body after treatment. Also, checkups help detect health problems that can result from cancer treatment.
Checkups may include a careful physical exam, blood tests, x-rays, or bone marrow biopsy.
You may want to ask your doctor these questions after you have finished treatment:
- How often will I need checkups?
- Which follow-up tests do you suggest for me?
- Between checkups, what health problems or symptoms should I tell you about?
Sources of Support
Learning you have myeloma can change your life and the lives of those close to you. These changes can be hard to handle. It’s normal for you, your family, and your friends to have new and confusing feelings to work through.
Concerns about treatments and managing side effects, hospital stays, and medical bills are common. You may also worry about caring for your family, keeping your job, or continuing daily activities.
Here’s where you can go for support:
- Doctors, nurses, and other members of your health care team can answer many of your questions about treatment, working, or other activities.
- Social workers, counselors, or members of the clergy can be helpful if you want to talk about your feelings or concerns. Often, social workers can suggest resources for financial aid, transportation, home care, or emotional support.
- Support groups can also help. In these groups, patients or their family members meet with other patients or their families to share what they have learned about coping with the disease and the effects of treatment. Groups may offer support in person, over the telephone, or on the Internet. You may want to talk with a member of your health care team about finding a support group.