Overview
Lymphomatous meningitis, also known as leptomeningeal lymphomatosis or lymphomatous leptomeningeal disease, is a serious condition in which lymphoma cancer cells spread to the meninges — the thin layers of tissue that cover and protect the brain and spinal cord. This is not a standalone inherited disease but rather a complication of lymphoma (a type of blood cancer that starts in the lymphatic system). When lymphoma cells travel to the fluid and membranes surrounding the brain and spinal cord, they can cause a range of neurological problems. Note: This entry is marked as 'OBSOLETE' in the Orphanet classification (code 329998), meaning it may have been reclassified or merged into broader categories of leptomeningeal metastasis or central nervous system involvement by lymphoma. Patients should look for updated classifications under leptomeningeal disease or CNS lymphoma. Symptoms can include severe headaches, nausea, vomiting, confusion, vision changes, weakness in the arms or legs, difficulty walking, and seizures. The condition can progress quickly and requires urgent medical attention. Treatment typically involves chemotherapy delivered directly into the spinal fluid (called intrathecal chemotherapy), systemic chemotherapy, and sometimes radiation therapy. The outlook depends on the type of lymphoma, how far it has spread, and how well it responds to treatment. While this condition is challenging to treat, advances in targeted therapies and immunotherapies have improved options for some patients.
Key symptoms:
Severe headachesNausea and vomitingConfusion or difficulty thinking clearlyVision changes such as double vision or blurred visionWeakness in arms or legsNumbness or tingling in the limbsDifficulty walking or balance problemsSeizuresNeck stiffnessFacial weakness or droopingDifficulty speakingHearing lossBack painLoss of bladder or bowel control
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
2 eventsJuan P. Alderuccio, MD — PHASE1
Ruijin Hospital — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableDepoCyt
Intrathecal treatment of lymphomatous meningitis
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Lymphomatous meningitis.
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 OBSOLETE: Lymphomatous meningitis.
Community
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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.What type of lymphoma do I have, and how has it spread to my meninges?,What treatment options are available for my specific situation?,What are the potential side effects of intrathecal chemotherapy?,Are there any clinical trials I might be eligible for?,How will we monitor whether the treatment is working?,Should I be referred to a neuro-oncologist or a specialized cancer center?,What supportive care or palliative care services are available to help manage my symptoms?
Common questions about OBSOLETE: Lymphomatous meningitis
What is OBSOLETE: Lymphomatous meningitis?
Lymphomatous meningitis, also known as leptomeningeal lymphomatosis or lymphomatous leptomeningeal disease, is a serious condition in which lymphoma cancer cells spread to the meninges — the thin layers of tissue that cover and protect the brain and spinal cord. This is not a standalone inherited disease but rather a complication of lymphoma (a type of blood cancer that starts in the lymphatic system). When lymphoma cells travel to the fluid and membranes surrounding the brain and spinal cord, they can cause a range of neurological problems. Note: This entry is marked as 'OBSOLETE' in the Orp
How is OBSOLETE: Lymphomatous meningitis inherited?
OBSOLETE: Lymphomatous meningitis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does OBSOLETE: Lymphomatous meningitis typically begin?
Typical onset of OBSOLETE: Lymphomatous meningitis is adult. Age of onset can vary across affected individuals.
Are there clinical trials for OBSOLETE: Lymphomatous meningitis?
Yes — 1 recruiting clinical trial is currently listed for OBSOLETE: Lymphomatous meningitis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
What treatment and support options exist for OBSOLETE: Lymphomatous meningitis?
1 patient support program are currently tracked on UniteRare for OBSOLETE: Lymphomatous meningitis. See the treatments and support programs sections for copay assistance, eligibility, and contact details.