If You Have Multiple Myeloma

If you or someone you know has just been diagnosed with multiple myeloma, this short guide can help. Find information on multiple myeloma here.

What is multiple myeloma?

Cancer can start any place in the body. Multiple myeloma is a type of cancer that starts in plasma cells, which are in the bone marrow — the soft, inner part of some bones. Normal plasma cells are a type of white blood cell that fight off infections by making antibodies that spot and attack germs.

When plasma cells grow out of control and become cancer cells, they can form a tumor, usually in a bone. If there is only one plasma cell tumor, it is called a solitary plasmacytoma. When there is more than one plasma cell tumor, it is called multiple myeloma.

Questions to ask the doctor:

• Why do you think I have cancer?
• Is there a chance I don’t have cancer?
• Would you please write down the kind of cancer I have?
• What will happen next?

How does the doctor know I have multiple myeloma?

Multiple myeloma is hard to find early. Sometimes people with multiple myeloma don’t have any symptoms until it is worse. When symptoms do happen, they can include bone pain, being sick to your stomach, not feeling like eating, feeling very tired, , losing a lot of weight , and getting sick a lot. The doctor will ask you questions about your health and do a physical exam.

If signs are pointing to multiple myeloma, more tests will be done. Here are some of the tests you may need:

Blood cell counts: This blood test is often the first test done.Most people with multiple myeloma have a low red blood cell count.

Blood and urine tests for immunoglobulins: Samples of your blood and urine might be tested for immunoglobulins (another name for antibodies). Levels of one of these proteins are typically higher than normal in people with multiple myeloma.

Blood chemistry tests: Tests might be done to check how well your kidney is working and how much calcium, potassium, and sodium and other chemicals are in your blood.

Bone marrow aspiration and biopsy : For these tests, a doctor uses thin, hollow needles to remove small amounts of bone marrow, usually from the hip bone. The area around the bone is numbed, and you may be given a drug to make you sleep during the test. The samples are sent to a lab to see if there are plasma cells in the bone marrow that aren’t normal.

Other biopsy tests: If you have a tumor or an enlarged lymph node, a thin, hollow needle attached to a syringe might be used to remove a small piece of it. The sample is then tested for cancer cells.

Bone x-rays: Bone damage caused by the myeloma cells can often be seen with x-rays. A series of x-rays might be done that includes most of the bones. This is called a bone survey or skeletal survey.

CT scan: This is also called a CAT scan. It’s a special kind of x-ray that takes detailed pictures of the body. CT scans can help show if your bones have been damaged by myeloma.

MRI scan: MRIs use radio waves and strong magnets instead of x-rays to take detailed pictures. MRI scans can be very helpful in looking at the bones and bone marrow.

PET scan:This test uses a special kind of sugar that can be seen inside your body with a special camera. This sugar shows up as hot spots where the cancer is.

Questions to ask the doctor:

• What tests will I need to have?
• Who will do these tests?
• Where will they be done?
• How and when will I get the results?
• Who will explain the results to me?
• What do I need to do next?

How serious is my multiple myeloma?

If you have multiple myeloma, the doctor will want to find out how advanced it is. This is called staging.

The stage of multiple myeloma is based on the results of x-rays and certain blood or urine tests. Be sure to ask the doctor about the stage of your multiple myeloma and what it means for you.

Questions to ask the doctor:

• Do you know the stage of my cancer?
• If not, how and when will you find out the stage of the cancer?
• Would you explain to me what the stage means in my case?
• Based on the stage of the cancer, how long do you think I’ll live?
• What will happen next?

What kind of treatment will I need?

The treatment plan that is best for you depends on the stage of your multiple myeloma, your age and overall health, and other factors. If the myeloma is found early and is not causing symptoms, you might not need to be treated right away. You might just be watched closely instead. If you do need treatment, it could include:

• Chemotherapy
• Other drug treatments like bisphosphonates that strengthen bones
• Stem cell transplant
• Radiation
• Other drugs and supportive therapy

Chemo

Chemo is the short word for chemotherapy – the use of drugs to fight cancer. The drugs are often given into a vein. These drugs go into the blood and spread all over the body. Chemo is given in cycles or rounds. Each round of treatment is followed by a break. Most of the time, 2 or more chemo drugs are given. Treatment often lasts for many months.

Side effects of chemo

Chemo can have many side effects, like:

• Hair loss
• Mouth sores
• Not feeling like eating
• Diarrhea
• Feeling sick to your stomach and throwing up
• More risk of infections
• Bruising and bleeding easily
• Tiredness

But these problems tend to go away after treatment ends. There are ways to treat most chemo side effects. Be sure to talk to your cancer care team so they can help.

Other drug treatments

Many other types of drugs can be used to treat multiple myeloma or its symptoms. These drugs work differently from chemo. Some of them target parts of myeloma cells that make them different from normal cells. Others help your immune system attack the myeloma cells. Still others can help strengthen your bones and lower your risk of fractures (broken bones). Often, different types of drugs are combined (sometimes along with chemo).

Some of these drugs are taken as pills, while others are injected into a vein. Each of these drugs can have its own side effects, so ask your doctor about which drugs you will get and what to expect.

Stem cell transplant

A stem cell transplant (SCT) lets doctors use very high doses of chemo to kill the myeloma cells. The high doses of these drugs destroy the bone marrow, which keeps new blood cells from being made. Although the drugs destroy the bone marrow, stem cells given after the chemo can bring back the normal blood-making bone marrow stem cells. There are different kinds of SCT, each of which can have side effects. Ask your doctor which type you will have and what to expect.

Radiation treatments

Radiation uses high-energy rays (like x-rays) to kill cancer cells. This treatment may be used to treat areas of myeloma that have not responded to other treatments and are causing pain or other problems.

Side effects of radiation treatments

If your doctor says you should get radiation treatment, ask what side effects might happen. The most common side effects of radiation are:

• Skin changes where the radiation is given
• Feeling very tired

Most side effects get better after treatment ends. Some might last longer. Talk to your doctor about what you can expect.

Supportive therapy

Sometimes you might need treatments for some of the problems that myeloma can cause like low blood counts and infections. Ask your doctor what kind of supportive treatment to expect.

Clinical trials

Clinical trials are research studies that test new drugs or other treatments in people. They compare standard treatments with others that may be better.

If you would like to learn more about clinical trials that might be right for you, start by asking your doctor if your clinic or hospital conducts clinical trials. See Clinical Trials to learn more.

Clinical trials are one way to get the newest cancer treatment. They are the best way for doctors to find better ways to treat cancer. If your doctor can find one that’s studying the kind of cancer you have, it’s up to you whether to take part. And if you do sign up for a clinical trial, you can always stop at any time.

What about other treatments I hear about?

When you have cancer, you might hear about other ways to treat the cancer or treat your symptoms. These may not always be standard medical treatments. These treatments may be vitamins, herbs, special diets, and other things. You may wonder about these treatments.

Some of these are known to help, but many have not been tested. Some have been shown not to help. A few have even been found to be harmful. Talk to your doctor about anything you’re thinking about using, whether it’s a vitamin, a diet, or anything else.

Questions to ask the doctor

What treatment do you think is best for me?

• What’s the goal of this treatment? How is it likely to help?
• Will I need other types of treatment, too?
• What’s the goal of these treatments?
• What side effects could I have from these treatments?
• What can I do about side effects that I might have?
• Should we think about a stem cell transplant? If so, when?
• Is there a clinical trial that might be right for me?
• What about special vitamins or diets that friends tell me about? How will I know if they are safe?
• How soon do I need to start treatment?
• What should I do to be ready for treatment?
• Is there anything I can do to help the treatment work better?
• What’s the next step?

What will happen after treatment?

Treatment often will not cure multiple myeloma, but it might make it go away for a time. If you have multiple myeloma, there might be times when you are not being treated. Or you might continue to get regular treatments with chemotherapy and other drugs, radiation, or other treatments to try to help keep the cancer in check.

Whether or not you are being treated, ongoing follow-up is very important. Your doctors will ask about symptoms, do an exam, and might order blood tests or tests like CT scans or x-rays. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

Having cancer and dealing with treatment can be hard, but it can also be a time to look at your life in new ways. You might be thinking about how to improve your health. Call us at 1-800-227-2345 or talk to your doctor to find out what you can do to feel better.

You can’t change the fact that you have cancer. What you can change is how you live the rest of your life – making healthy choices and feeling as good as you can.