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

The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below.

Signs and Symptoms	Approximate number of patients (when available)
Leukemia	Occasional (present in 5%-29% of cases)
Lymphoma	Occasional (present in 5%-29% of cases)
Autosomal dominant inheritance	-
Impaired lymphocyte transformation with phytohemagglutinin	-
Monoclonal immunoglobulin M proteinemia	-
Polyclonal elevation of IgM	-
Polyneuropathy	-

Last updated: 9/1/2017

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

Do you have updated information on this condition? Let us know.

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 studying or have studied 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: 800-227-2345
Website: http://www.cancer.org
International Waldenstrom’s Macroglobulinemia Foundation (IWMF)
6144 Clark Center Ave.
Sarasota, FL 34238
Telephone: 941-927-4963
Fax: 941-927-4467
E-mail: info@iwmf.com
Website: http://www.iwmf.com/
Lymphoma Research Foundation
115 Broadway, Suite 1301
New York, NY 10006
Toll-free: 800-500-9976
Telephone: 212-349-2910
Fax: 212-349-2886
E-mail: Helpline@lymphoma.org
Website: http://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? Send us your suggestions.

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.

Genetics 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 GeneTests, 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.

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.

News & Events News & Events

News

Don’t Miss the NCATS Toolkit for Patient-Focused Therapy Development Event
August 31, 2017
Funding Opportunities Now Available for the Undiagnosed Diseases Network (UDN) Phase II
August 30, 2017
IRDiRC Goals 2017-2027: New Rare Disease Research Goals for the Next Decade
August 10, 2017

NCATS Co-Sponsored Conferences

Overcoming Barriers to International Clinical Trials for Rare Cancers Friday, December 10, 2010
Location: Bethesda, Maryland
Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.

Contact: Jack Welch, M.D., Ph.D., jack.welch@nih.govjack.welch@nih.gov

Co-funding Institute(s): National Cancer Institute, Office of Rare Diseases Research
- Summary ( - 46KB)

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.

Do you know of a review article? Send us your suggestions.