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Don’t fight Waldenstrom macroglobulinemia alone.
Find your community on the free RareGuru App.Waldenstrom macroglobulinemia is a chronic, slow-growing lymphoproliferative disorder. It usually affects older adults and is primarily found in the bone marrow, although lymph nodes and the spleen may be involved. Affected individuals have a high level of an antibody called immunoglobulin M (IgM) in their blood, which can cause thickening of the blood (hyperviscosity). Although some individuals initially do not have symptoms and are diagnosed from routine blood work, common symptoms may include weakness, appetite loss and weight loss. Other symptoms may include peripheral neuropathy, fever, Raynaud's phenomenon, and mental status changes. Hyperviscosity of the blood may cause nosebleeds, headaches, dizziness, and blurring or loss of vision. The cause of the condition is not known but environmental, genetic, and viral factors have been suggested. There have been some reports of familial cases suggesting a genetic predisposition. Treatment is often reserved for those with symptoms and may include various medications including corticosteroids, alkylating agents, biologic response modifiers and purine analogues.
Source: GARD Last updated on 07-05-20
5%-29% of people have these symptoms.
Click on a symptom to see definitions for associated terms.
| Abnormality of the tibial metaphysis |
| Generalized muscular appearance from birth |
| Leukemia |
| Lymphoma |
An unknown % of people have these symptoms.
Click on a symptom to see definitions for associated terms.
We were unable to find any published studies which support a link between asbestos exposure and Waldenström macroglobulinemia (WM). In fact, we found a study which did not link WM to any specific occupational exposure and another study which looked at a number of possible environmental exposures including asbestos and reported a possible association with exposure to farming, pesticides, and wood dust, but not for solvents, hair dye, or asbestos.
To date, the cause of WM is unknown, though it is believed to be due to a combination of genetic and environmental factors. No differences in social or economic factors, prior medical conditions, medication use, alcohol consumption, employment in any particular industry or occupation, specific occupational exposures (including radiation), or familial cancer history have been found to be linked to WM.
However, several large studies have suggested an association with chronic immune stimulation and autoimmune disorders, including Hepatitis C . However more studies are needed to determine if there is a causal relationship between these factors and WM.
From the information we could find, therefore, asbestos does not appear to be a risk factor for developing WM, but since the risk and causative factors are not known yet, it would be too early to declare that there is definitely no link.
Last updated on 05-01-20
Nonprofit support and advocacy groups can offer a way to connect to others who may have similar experiences. Information gathered from affected members of different groups has sometimes changed the direction of research by bringing to light commonalities that were missed because few physicians actually saw many affected people with the condition or did not ask the right questions to make the discovery. In addition, members of the Medical Advisory Boards may be aware of unpublished information and private ongoing research or may become interested in pursuing a research interest brought to their attention by the affected members of a group. The Information Center provides the names of organizations for informational purposes only and not as an endorsement of services.
International Waldenstrom’s Macroglobulinemia Foundation (IWMF)
6144 Clark Center Ave.
Sarasota, FL 34238
Telephone: +1-941-927-4963
Fax: +1-941-927-4467
E-mail: info@iwmf.com
Website: http://www.iwmf.com/
You can find more organizations which support WM in the Organization section.
Last updated on 05-01-20
The American Cancer Society has information about the possible risks factors for developing WM, as well as a detailed description about what is known about the molecular changes which occur.
Medscape Reference provides information about the possible causes and risk factors of WM. You may need to register to view the article, but registration is free.
Last updated on 05-01-20
For individuals who do not have any symptoms, doctors may decide to "watch and wait" and not treat the disease right away. This can last many years for some individuals. For individuals requiring treatment, the type and severity of symptoms present, aggressiveness of the disease, and age all play a role in the type of therapy chosen.
Some affected individuals have a procedure called plasmapheresis, to reverse or prevent the symptoms associated with the thickening of the blood (hyperviscosity). This involves removing the blood, passing it through a machine that removes the part of the blood with the IgM antibody, and returning the blood to the body. This may be combined with other treatments such as various types of chemotherapy. Many different drugs can be used to manage this condition, both alone and/or in various combinations.
For many individuals, there is a delayed response to treatment and the best response sometimes occurs several months after the treatment ends. Although the condition is not curable, many individuals do have a long-term response to treatment. Those who relapse after treatment or do not respond to initial treatment may consider secondary therapies. There are also several new drugs and drug combinations that are being studied in clinical trials.
Last updated on 05-01-20
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