Waldenstrom macroglobulinemia (WM, Lymphoplasmacytic lymphoma) is a rare slow-growing cancer that affects your blood cells. WM happens when genetic mutations change certain blood cells. Providers can’t cure this condition, but they do have treatments that ease and sometime eliminate its symptoms.
Waldenstrom macroglobulinemia is a rare slow-growing cancer that affects your blood cells. It’s a type of non-Hodgkin’s lymphoma. (Healthcare providers may refer to this condition by the initials WM or the name lymphoplasmacytic lymphoma). WM happens when genetic mutations change certain blood cells, setting up a chain reaction of medical conditions that may be life-threatening. Providers can’t cure this condition, but they do have treatments that ease and sometimes eliminate its symptoms.
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No, it’s not common. It’s a very rare disease that affects about 5 people per 1 million in the United States. Healthcare providers diagnose an estimated 1,000 to 1,500 new cases each year. Waldenstrom macroglobulinemia typically affects people aged 65 and older. Men and people assigned male at birth are more likely to develop WM than women or people assigned female at birth. WM is more common in people who are white than in people in other ethnic groups.
Waldenstrom macroglobulinemia starts in white blood cells called B-lymphocytes or B-cells that are under development in your bone marrow. Your bone marrow is the spongy center of your bones. It produces stem cells that eventually become red blood cells, white blood cells and platelets.
In WM, B-cells turn into abnormal cells called lymphoplasmacytoid cells. This happens when two genes in certain proteins that manage B-cell activity mutate or change. When these genes mutate, they turn a single normal B-cell into an abnormal cell that reproduces more cells. The abnormal cells make unusually large amounts of an antibody protein known as immunoglobulin M (IgM or M protein).
M protein thickens your blood, turning it from free-flowing fluid into a syrup-like liquid. This is hyperviscosity syndrome. This is a very rare condition unique to Waldenstrom macroglobulinemia. The thickened blood doesn’t flow easily through your body’s tiny blood vessels. Sometimes blood vessels tear, causing your nose, gums or the retinas in your eyes to seep (ooze) blood.
At the same time, your bone marrow continues to fill up with abnormal cells. Normally, your B-cells mature and move into your bloodstream, where they eventually die and are replaced with more healthy B-cells. In WM, abnormal cells stay in your bone marrow, where they keep multiplying and do not die. Just like people piling into a subway car until there’s no room for any new passengers, abnormal blood cells crowd your bone marrow, leaving no space for normal blood cells to develop. Here’s what may happen then:
Left untreated, WM can be life-threatening. It may also cause complications including:
Some people have WM without having any symptoms. They may learn they have this condition while visiting their healthcare provider for other reasons. When WM does cause symptoms, they come on very gradually. The most common symptoms include:
Healthcare providers know genetic mutations or changes trigger Waldenstrom macroglobulinemia, but they don’t know what triggers the mutations. Providers have also identified risk factors that may increase the chance of developing Waldenstrom macroglobulinemia.
Waldenstrom macroglobulinemia is when your B-cell mutates into an abnormal cell. These abnormal cells multiply uncontrollably. They also don’t mature and die like normal cells. Eventually, abnormal cells outnumber normal cells. These genetic changes don’t pass down from parent to child and appear to happen later in life. Researchers are investigating what triggers the changes.
Approximately 90 % of people diagnosed with WM have abnormal B-cells that mutated or changed while the cells were developing in their bone marrow. The mutation involves the MYD88 gene. This gene gives instructions to the MYD88 protein. The MYD88 protein serves as communications central for proteins inside and outside immune cells. When the MYD88 protein mutates, it goes into overdrive, creating many abnormal cells that in turn create more proteins that are abnormal. About 40% of people who have Waldenstrom macroglobulinemia also have changes to their CXCR4 gene. This gene provides instructions for making a protein that plays a role in regulating how quickly white blood cells grow, divide and migrate from your bone marrow into your bloodstream. When the CXCR4 gene mutates, it makes proteins that help the abnormal cells in Waldenstrom macroglobulinemia continue to multiply.
Age, family history, gender and a pre-existing condition are all risk factors that may increase the chance someone will develop Waldenstrom macroglobulinemia. Here is information about people who may have personal characteristics or conditions that increase their risk:
Providers may use several tests to diagnose this condition:
If you have WM but don’t have symptoms, your provider may not start treatment right away. This is watchful waiting. Some people may have Waldenstrom macroglobulinemia without symptoms and may not need treatment for years.
When treatment is necessary, it varies according to the patient. Treatment options for WM include:
Waldenstrom macroglobulinemia happens when certain genes mutate, and you can’t prevent that mutation from happening. There are risk factors that may increase your chance of developing this condition. If you’re concerned you may be at risk, ask your healthcare provider to evaluate your situation so you know what to expect.
Healthcare providers can’t cure Waldenstrom macroglobulinemia, but they do have treatments that ease symptoms. In some cases, treatments may eliminate WM symptoms for months or years.
Everyone’s situation is different, particularly with a slow-growing condition like Waldenstrom macroglobulinemia. Studies show that 75% of people who have this condition are alive five years after they’re diagnosed. If you have questions about your situation, talk to your healthcare provider. They know you and the circumstances that may affect your prognosis.
Living with Waldenstrom macroglobulinemia differs depending on your situation. If you have this condition but don’t have symptoms, your healthcare provider may recommend regular checkups so they can monitor your overall health. If you’ve been diagnosed and are being treated because you have symptoms, your provider may schedule follow-up appointments every few weeks to monitor your progress and help you manage any treatment side effects.
Contact your provider if you have the following symptoms:
Whether you’re being treated, are in remission or don’t have symptoms, there are many things you can do to support your overall health and help with your condition. Here are some suggestions:
Waldenstrom macroglobulinemia affects people in many different ways, and not everyone who has this condition has the same experience. Talk to your healthcare provider about your situation. Here are a few questions to consider:
A note from Cleveland Clinic
Waldenstrom macroglobulinemia (WM) is a rare disease that happens when certain genes mutate, creating changes in your blood. Waldenstrom macroglobulinemia usually affects people 65 and older, causing symptoms like fatigue that some people may dismiss as simply signs they’re growing old. Left untreated, this disease may cause life-threatening medical issues.
Fortunately, healthcare providers have treatments to ease and possibly eliminate Waldenstrom macroglobulinemia symptoms. If you’re concerned about developing this condition, ask your provider about any risk factors that may increase the chance you’ll have Waldenstrom macroglobulinemia. If you have this condition, it may help to know providers can treat and maybe eliminate your symptoms for years to come.
Last reviewed by a Cleveland Clinic medical professional on 06/06/2022.
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