Overview
Diffuse large B-cell lymphoma of the central nervous system (also called primary CNS lymphoma or PCNSL) is a rare and aggressive type of cancer that starts in the brain, spinal cord, eyes, or the membranes surrounding the brain (meninges). It develops from a type of white blood cell called B-lymphocytes, which are part of the immune system. Unlike lymphomas that start elsewhere in the body and later spread to the brain, this cancer begins directly in the central nervous system. Common symptoms include headaches, confusion, memory problems, personality changes, weakness on one side of the body, seizures, and vision changes. Some patients experience difficulty speaking or problems with balance and coordination. Symptoms often develop over weeks to months and can be mistaken for other brain conditions like stroke or dementia. This disease is more common in people with weakened immune systems, such as those with HIV/AIDS or organ transplant recipients on immunosuppressive drugs, but it also occurs in people with normal immune systems, typically in older adults. Treatment usually involves high-dose methotrexate-based chemotherapy, sometimes combined with other drugs and occasionally followed by radiation therapy or stem cell transplant. While the disease is serious, advances in treatment have improved outcomes significantly over the past two decades. Early diagnosis and prompt treatment are important for the best possible results.
Also known as:
Key symptoms:
Persistent headachesConfusion or difficulty thinking clearlyMemory problemsPersonality or behavior changesWeakness on one side of the bodySeizuresBlurred or double visionDifficulty speaking or finding wordsProblems with balance or coordinationNausea and vomitingFatigue and drowsinessEye floaters or vision lossNumbness or tingling in limbsDifficulty walking
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
4 eventsSecond Affiliated Hospital, School of Medicine, Zhejiang University — PHASE1
Sun Yat-sen University — PHASE2
Fred Hutchinson Cancer Center — PHASE1, PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Diffuse large B-cell lymphoma of the central nervous system.
2 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
Travel Grants
No travel grants are currently matched to Diffuse large B-cell lymphoma of the central nervous system.
Community
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Start the conversation →Latest news about Diffuse large B-cell lymphoma of the central nervous system
Disease timeline:
New recruiting trial: DALY II USA/ MB-CART2019.1 for DLBCL
A new clinical trial is recruiting patients for Diffuse large B-cell lymphoma of the central nervous system
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.What is the exact location and extent of the lymphoma in my brain, and has it spread to my eyes or spinal fluid?,What chemotherapy regimen do you recommend for me, and what are the expected side effects?,Am I a candidate for autologous stem cell transplant as consolidation therapy?,What is the risk of cognitive decline from the proposed treatment, and how can it be minimized?,How will you monitor whether the treatment is working, and how often will I need MRI scans?,What happens if the lymphoma comes back after treatment — what are my options at that point?,Are there any clinical trials available that I should consider?
Common questions about Diffuse large B-cell lymphoma of the central nervous system
What is Diffuse large B-cell lymphoma of the central nervous system?
Diffuse large B-cell lymphoma of the central nervous system (also called primary CNS lymphoma or PCNSL) is a rare and aggressive type of cancer that starts in the brain, spinal cord, eyes, or the membranes surrounding the brain (meninges). It develops from a type of white blood cell called B-lymphocytes, which are part of the immune system. Unlike lymphomas that start elsewhere in the body and later spread to the brain, this cancer begins directly in the central nervous system. Common symptoms include headaches, confusion, memory problems, personality changes, weakness on one side of the body
How is Diffuse large B-cell lymphoma of the central nervous system inherited?
Diffuse large B-cell lymphoma of the central nervous system follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Diffuse large B-cell lymphoma of the central nervous system typically begin?
Typical onset of Diffuse large B-cell lymphoma of the central nervous system is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Diffuse large B-cell lymphoma of the central nervous system?
Yes — 2 recruiting clinical trials are currently listed for Diffuse large B-cell lymphoma of the central nervous system on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Diffuse large B-cell lymphoma of the central nervous system?
25 specialists and care centers treating Diffuse large B-cell lymphoma of the central nervous system are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.