Living with Waldenstrom macroglobulinemia
A rare, slow-growing blood cancer in which abnormal white blood cells fill the bone marrow, usually starting in the sixties.
Understanding Waldenstrom macroglobulinemia
These cells make too much of a large protein called IgM. It is a slow-growing (indolent) cancer that usually begins in a person's sixties. Some people have no symptoms and it is found by a blood test done for another reason. Common first signs are weakness and tiredness from anemia, fever, night sweats, and weight loss.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tiredness and weakness from anemia
- Pale skin
- Bleeding gums
- Dizziness
- Fever, night sweats, and weight loss
- Numbness and weakness in the limbs
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include blood and bone marrow specialists, brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
International Waldenstrom's Macroglobulinemia Foundation and The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: International Waldenstrom's Macroglobulinemia Foundation, The Foundation for Peripheral Neuropathy
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with International Waldenstrom's Macroglobulinemia Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet. It says abnormal cells make too much IgM protein.
Also known as: lymphoplasmacytic lymphoma with igm gammopathy; macroglobulinemia; primary macroglobulinemia; waldenstrom's macroglobulinemia; waldenström macroglobulinemia
Patient organizations
- International Waldenstrom's Macroglobulinemia FoundationWaldenstrom macroglobulinemia · United States
- American Cancer SocietyWaldenstrom macroglobulinemia · United States
- CancerCareWaldenstrom macroglobulinemia · United States
- Lymphoma Research FoundationWaldenstrom macroglobulinemia · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Waldenstrom macroglobulinemia.
Organization Spotlight: The International Waldenstrom's Macroglobulinemia Foundation (IWMF)
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9 Things to Know After Diagnosis
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The Invisible Job: What Caregiving for a Rare Disease Really Looks Like
Read articleExplore research for Waldenstrom macroglobulinemia
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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