Overview
Waldenström macroglobulinemia (WM), also called lymphoplasmacytic lymphoma, is a rare type of slow-growing blood cancer. It starts in white blood cells called B-cells, which normally help fight infections. In WM, these cells become abnormal and multiply out of control in the bone marrow — the spongy tissue inside your bones where blood cells are made. These abnormal cells produce a large amount of a protein called IgM (immunoglobulin M), sometimes called a 'macroglobulin.' When too much IgM builds up in the blood, it can make the blood thicker than normal, a condition called hyperviscosity syndrome. Common symptoms include extreme tiredness, unexplained weight loss, night sweats, and swollen lymph nodes. The thick blood can cause headaches, blurred vision, dizziness, and even bleeding from the nose or gums. Some people develop numbness or tingling in their hands and feet because the IgM protein can damage nerves. Anemia — a low red blood cell count — is also very common and contributes to fatigue. Many people with WM are watched closely without treatment at first, a strategy called 'watchful waiting.' When treatment is needed, doctors use chemotherapy, targeted drugs, and immunotherapy. Key FDA-approved and commonly used treatments include ibrutinib (Imbruvica), rituximab, bendamustine, and zanubrutinib (Brukinsa). WM is generally not curable with standard treatments, but many people live for many years with good quality of life when the disease is well managed.
Key symptoms:
Extreme tiredness and low energy (fatigue)Unexplained weight lossNight sweatsSwollen lymph nodes in the neck, armpits, or groinHeadaches and dizzinessBlurred or double visionNumbness or tingling in the hands and feetNosebleeds or bleeding gumsPale skin due to anemiaShortness of breathFeeling full quickly or a swollen belly (enlarged spleen or liver)Confusion or difficulty thinking clearlySensitivity to cold (Raynaud's phenomenon)Recurrent infections
Clinical phenotype terms (45)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Late onset
Begins later in life, typically after age 50
FDA & Trial Timeline
9 eventsAbbVie — PHASE2
Christian Buske — PHASE2
Massachusetts General Hospital — PHASE2
Fundación Española de Hematología y Hemoterapía
Sunnybrook Health Sciences Centre — PHASE2
Dana-Farber Cancer Institute — PHASE2
University College, London — PHASE2, PHASE3
M.D. Anderson Cancer Center — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Waldenström macroglobulinemia.
9 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesBRUKINSA
BeiGene
Waldenström Macroglobulinemia
Travel Grants
No travel grants are currently matched to Waldenström macroglobulinemia.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Do I need to start treatment now, or is watchful waiting appropriate for me?,What are my MYD88 and CXCR4 mutation results, and how do they affect my treatment options?,Which treatment do you recommend for me, and what are the main side effects I should expect?,How will we know if the treatment is working, and what happens if it stops working?,Are there any clinical trials I might be eligible for?,How often will I need blood tests and check-ups, and what symptoms should prompt me to call you right away?,Are any of my family members at higher risk, and should they be tested or monitored?
Common questions about Waldenström macroglobulinemia
What is Waldenström macroglobulinemia?
Waldenström macroglobulinemia (WM), also called lymphoplasmacytic lymphoma, is a rare type of slow-growing blood cancer. It starts in white blood cells called B-cells, which normally help fight infections. In WM, these cells become abnormal and multiply out of control in the bone marrow — the spongy tissue inside your bones where blood cells are made. These abnormal cells produce a large amount of a protein called IgM (immunoglobulin M), sometimes called a 'macroglobulin.' When too much IgM builds up in the blood, it can make the blood thicker than normal, a condition called hyperviscosity syn
How is Waldenström macroglobulinemia inherited?
Waldenström macroglobulinemia follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Waldenström macroglobulinemia typically begin?
Typical onset of Waldenström macroglobulinemia is late onset. Age of onset can vary across affected individuals.
Are there clinical trials for Waldenström macroglobulinemia?
Yes — 9 recruiting clinical trials are currently listed for Waldenström macroglobulinemia on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Waldenström macroglobulinemia?
19 specialists and care centers treating Waldenström macroglobulinemia are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Waldenström macroglobulinemia?
1 patient support program are currently tracked on UniteRare for Waldenström macroglobulinemia. See the treatments and support programs sections for copay assistance, eligibility, and contact details.