Waldenstrom macroglobulinemia

Title

Other Names:

Waldenstrom's macroglobulinaemia; Lymphoplasmacytic lymphoma; Waldenstrom's syndrome; Waldenstrom's macroglobulinaemia; Lymphoplasmacytic lymphoma; Waldenstrom's syndrome; Macroglobulinemia of Waldenstrom See More

Categories:

Rare Cancers

Summary Summary

Waldenstrom macroglobulinemia is a chronic, slow-growing lymphoproliferative disorder.^[1] 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).^[2] 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.^[1] Hyperviscosity of the blood may cause nosebleeds, headaches, dizziness, and blurring or loss of vision.^[2] 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.^[1]

Last updated: 10/1/2013

Symptoms Symptoms

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

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Medical Terms	Other Names	Learn More: HPO ID
5%-29% of people have these symptoms
Leukemia		0001909
Lymphoma	Cancer of lymphatic system	0002665
Percent of people who have these symptoms is not available through HPO
Autosomal dominant inheritance		0000006
Impaired lymphocyte transformation with phytohemagglutinin		0003347
Monoclonal immunoglobulin M proteinemia		0005508
Polyclonal elevation of IgM		0003459
Polyneuropathy	Peripheral nerve disease	0001271

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Last updated: 12/1/2018

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Treatment Treatment

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.^[2]^[1]

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.^[2]

More detailed information about the specific medications used to treat Waldenstrom macroglobulinemia can be viewed on Medscape Reference's Web site.

Last updated: 10/1/2013

Find a Specialist Find a Specialist

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by the American College of Medical Genetics and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.
ClinicalTrials.gov lists trials that are related to Waldenstrom macroglobulinemia. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

American Cancer Society
250 Williams Street NW
Atlanta, GA 30329
Toll-free: 1-800-227-2345
Website: https://www.cancer.org
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: https://www.iwmf.com/
Lymphoma Research Foundation
Wall Street Plaza
88 Pine Street, Suite 2400
New York, NY 10005
Toll-free: 1-800-500-9976
Telephone: +1-212-349-2910
Fax: +1-212-349-2886
E-mail: helpline@lymphoma.org
Website: https://www.lymphoma.org/

Social Networking Websites

RareConnect has an online community for patients and families with this condition so they can connect with others and share their experiences living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).

Do you know of an organization? We want to hear from you.

Living With Living With

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Financial Resources

Patient Access Network Foundation (PAN Foundation) has Assistance Programs for those with health insurance who reside in the United States. The disease fund status can change over time, so you may need to check back if funds are not currently available.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

Genetics Home Reference (GHR) contains information on Waldenstrom macroglobulinemia. This website is maintained by the National Library of Medicine.
MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine.
PubMed is a searchable database of medical literature and lists journal articles that discuss Waldenstrom macroglobulinemia. Click on the link to view a sample search on this topic.

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

Could asbestos be one of the causes of Waldenström macroglobulinemia (WM)? See answer
My mother has this syndrome with lymphoma stage 4 of the bone marrow and myelodysplasia syndrome too. What are the treatment options besides chemotherapy for this? See answer

Have a question? Contact a GARD Information Specialist.

References References

Karen Seiter. Waldenstrom Macroglobulinemia. Medscape Reference. January 31, 2012; http://emedicine.medscape.com/article/207097-overview. Accessed 10/1/2013.
Waldenström's Macroglobulinemia. Lymphoma Research Foundation. 2012; http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300163. Accessed 10/1/2013.

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