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If you or someone you know has just been diagnosed with multiple myeloma, this short guide can help. Learn more about 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.

Normal plasma cells are a type of white blood cell found in your bone marrow (the soft, inner part of some bones). They help fight off infections by making proteins called antibodies, which 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 multiple myeloma?
• 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 at first. Instead, the first signs might be noticed on a blood or urine test.

When multiple myeloma symptoms do happen, they can include bone pain, 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.

Tests that may be done

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

Blood and urine tests for immunoglobulins (antibodies): 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 kidneys are working and how much calcium, potassium, 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 your hip bone. The samples are sent to a lab to see if there are abnormal (unusual) plasma cells in your bone marrow.

Other biopsy tests: If you have a tumor or an enlarged lymph node, a thin, hollow needle 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. These are done less often now than in the past.

CT (CAT) scan: This test uses x-rays to make detailed pictures of your body. CT scans can help show if your bones have been damaged by myeloma.

MRI scan: MRIs make detailed pictures using radio waves and strong magnets instead of x-rays. MRIs can be very helpful in looking at your 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 located. This test is often combined with a CT scan (known as a PET/CT scan).

Questions to ask the doctor:

• What tests will I need?
• 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 certain tests of blood and tumor samples. Ask your 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 multiple myeloma?
• If not, how and when will you find out the stage?
• Would you explain to me what the stage means in my case?
• Does the stage of the cancer affect my treatment options?
• What will happen next?

What kind of treatment will I need?

The best treatment plan for you will depend on your age and overall health, certain traits of the myeloma, 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:

• Medicines (including targeted drugs, immunotherapy, and chemotherapy)
• Other drugs that strengthen bones
• A stem cell transplant
• Radiation
• Other types of supportive therapy

Medicines

Medicines are often the main treatment for people with myeloma. These include:

• Targeted drugs: Medicines that attack certain parts of myeloma cells.
• Immunotherapy: Medicines that help the body’s immune system attack the myeloma cells.
• Chemotherapy (chemo): Drugs that kill cancer cells.
• Medicines to strengthen bones: Medicines that help strengthen your bones and lower your risk of fractures (broken bones).

Most people with myeloma will get 3 or 4 drugs combined. Some of these drugs are taken as pills, while others are injected into a vein (IV) or under the skin.

Each drug can have its own side effects, so ask your cancer care team 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.

Blood stem cells are collected from your blood or bone marrow before the treatment. They are then given back into a vein after treatment to restore your bone marrow.

A stem cell transplant can have serious side effects, so not everyone with myeloma can get one. Ask your cancer care team if this is an option for you 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 treatments

Myeloma can cause problems like low blood counts and infections. You might need treatments to help with these problems.

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 cancer care team if your clinic or hospital has 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 multiple myeloma, you might hear about other ways to treat the cancer or your symptoms. These may not always be standard medical treatments. These treatments may be vitamins, herbs, special diets, and other things.

Some of these treatments 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 cancer care team 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 these side effects?
• 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 usually does not cure multiple myeloma, but it can often make it go away or keep it under control for a long 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 drugs, radiation, or other treatments to try to keep the cancer in check.

Whether or not you are being treated, ongoing follow-up is very important.

At your follow-up visits, your doctors will ask about your symptoms and do an exam. They might also order blood or urine tests or imaging tests like CT scans. This is the best time to ask questions and talk to your cancer care team about any changes you notice or any concerns or problems 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 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.

Call us at 1-800-227-2345 for 24/7 support. Or talk to your cancer care team about steps you can take to feel better.