What Is Waldenstrom's Macroglobulinemia?
If your doctor says you have Waldenstrom's macroglobulinemia, it means you have a rare blood cancer that usually spreads slowly. It's also called lymphoplasmacytic lymphoma (LPL).
This disease is a kind of non-Hodgkin's lymphoma. These are cancers that start in white blood cells called lymphocytes, which are a part of your immune system -- your body's defense against germs.
Some lymphocytes are called "B cells," which help your body fight off infections. They do this by turning into plasma cells that make a protein called immunoglobulin M. This protein attaches to germs and helps your immune system target them.
In Waldenstrom's macroglobulinemia, something goes wrong with this process. The B cells turn into cancer cells, which means they grow out of control.
These cancer cells form mainly in your bone marrow, the spongy tissue in the center of most bones. They crowd out healthy blood cells.
Waldenstrom's macroglobulinemia cells can also cause problems because they make large amounts of immunoglobulin M. When this builds up, your blood can become thicker than usual. It's harder for your blood to move through your blood vessels.
There's no cure for Waldenstrom's macroglobulinemia, but there are treatments that can help. Medicines can keep it under control, sometimes for many years.
While you manage this disease, it's important to reach out to family and friends to get the backing you need. They can give you support while you get treatment and help you handle the emotional roller coaster that sometimes goes along with a cancer diagnosis.
Experts think that changes in your DNA may lead to the disease. Nine out of 10 times, Waldenstrom's macroglobulinemia cells have a change on a gene called MYD88. Researchers have also linked another gene, CXCR4, to the disease.
Both genes help cells send signals to each other, so they stay alive. The DNA changes may cause the genes to get stuck in the "on" position, so cells live longer than they normally do.
Scientists are studying what causes these DNA changes. They know that they aren't passed down from your parents. Most of the time, the changes happen later in life. This may explain why Waldenstrom's macroglobulinemia is usually diagnosed in older people.
The disease is more common in men than women. Your chances of having Waldenstrom's macroglobulinemia are higher if you:
- Are 50 or older
- Are white
- Have a condition called MGUS (monoclonal gammopathy of undetermined significance)
- Have a relative with a disease that affects their white blood cells.
You may not notice anything different. One in four people with Waldenstrom's macroglobulinemia don't have any symptoms when they're diagnosed.
It's possible, though, that you may have a variety of health issues. As the cancer cells spread in your bone marrow, your healthy blood cell levels drop. Having fewer red blood cells causes a condition called anemia, which can leave you feeling tired. And if you have fewer white cells, it’s harder for your body to fight off infections.
Your number of platelets -- blood cells that help you form clots -- may also drop. This can cause you to bleed or bruise more easily. And Waldenstrom's macroglobulinemia cells in your organs can trigger swelling.
Besides these problems, you may also get symptoms like:
- Night sweats
- Lack of appetite and weight loss without trying
- Frequent infections
- Swollen belly or lymph nodes
- Confusion, dizziness, and clumsiness
- Shortness of breath
- Changes in vision, such as blurriness
- Numbness or tingling in your hands or feet
Getting a Diagnosis
Your doctor will start by asking questions about your health history and do a physical exam. They may check for swelling in your lymph nodes, liver, and spleen.
Your doctor may also ask you to take tests, such as:
Blood tests. Your doctor takes a sample of your blood and sends it to a lab, where technicians look at it under a microscope. Blood tests show if you have low levels of healthy blood cells. They can also check the amount of immunoglobulin M proteins in your blood.
Blood tests also measure how well your organs are working.
Bone marrow aspiration and biopsy. To confirm that you have Waldenstrom's macroglobulinemia, your doctor tests your bone marrow for cancer cells. Bone marrow aspiration and biopsy are done at your doctor's office or in a hospital.
In an aspiration, your doctor numbs part of your hip and puts in a thin needle. It sucks out a small sample of liquid bone marrow. Your doctor usually then does a biopsy. Another needle removes some of your bone marrow tissue.
Your doctor sends the samples to a lab, where technicians check for cancer cells. They also test your bone marrow for markers of Waldenstrom's macroglobulinemia.
Imaging tests. Your doctor may want to see if the cancer has spread. These tests include X-rays and a CT scan, which is a powerful kind of X-ray. They're often combined with PET scans, which use a weak radioactive material to look for cancer cells.
Questions for Your Doctor
- Where is my Waldenstrom’s macroglobulinemia located? Will I need any other tests to help guide my treatment?
- What are my treatment options and their goals? Which ones do you recommend?
- What are the risks and side effects for each treatment?
- How can I tell if my treatments are working?
- What kind of follow-up will I need?
- After treatment, are there any symptoms that I should watch out for?
Your doctor will suggest a treatment plan based on your symptoms and how much the cancer has spread.
If you don't have symptoms, your doctor may suggest a "watch-and-wait" approach. This means you won't get treatment, but they'll keep a close eye on your health. You may need to get blood tests every few months. It can be years before you need treatment.
If you do have symptoms, your doctor may suggest one treatment or a combination of treatments:
Chemotherapy. These drugs use powerful chemicals to kill cancer cells. You take them by mouth, or a doctor injects them into you.
Biological therapy. You'll get medicines that help your immune system fight cancer cells. You might also use man-made versions of substances that your immune system makes. A doctor usually injects them into your body.
Targeted therapy. These are drugs that block certain proteins or enzymes that help the cancer cells grow. The medicine often comes in pill form.
Plasma exchange. Your doctor may want you to lower your levels of immunoglobulin M. To do this, you may need a plasma exchange. In this treatment, you're hooked up to an IV. Your blood is filtered through a machine that separates the liquid part of your blood, called plasma, from the blood cells, to remove immunoglobulin M. Healthy plasma gets swapped in.
Stem cell transplant. In this treatment, high doses of chemotherapy kill the cancerous bone marrow. A bone marrow transplant replaces it with stem cells. These stem cells grow into new, healthy bone marrow. This procedure is not common for Waldenstrom's macroglobulinemia.
Clinical trials. In these research studies, you try out experimental treatments that have not yet been approved by the FDA. Your doctor can help you find out if one's right for you.
What to Expect
Because Waldenstrom's macroglobulinemia usually spreads slowly, you can keep it in check if you catch it early.
During treatment, you may have side effects. For example, chemotherapy can lead to nausea, temporary hair loss, diarrhea, and fatigue. Ask your doctor for advice on how to manage these problems. They may be able to suggest medicines that can help.
After treatment, you'll need to go to follow-up appointments. Your doctor will check that you're healthy and that the cancer hasn't returned.
Consider joining a support group, where you can talk to others who understand just what you're going through. The groups meet in person, on the telephone, or online.
To find a local support group, ask your doctor, social worker, or other people with your condition. You can also go to the websites of the Leukemia & Lymphoma Society, International Waldenstrom's Macroglobulinemia Foundation, National Cancer Institute, and American Cancer Society.