Living with Primary effusion lymphoma
A rare large B-cell lymphoma that grows in body cavities and causes fluid around the lungs, heart or abdomen.
Understanding Primary effusion lymphoma
GARD says it is always associated with human herpes virus-8 (HHV-8). It usually appears in adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Fluid around the lungs
- Fluid around the heart
- Swollen or painful belly
- Trouble breathing
- Weakened immune system
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 and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 says the condition is always associated with human herpes virus-8 (HHV-8).
Also known as: body cavity-based lymphoma; pel
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary effusion lymphoma.
Explore research for Primary effusion lymphoma
Explore actively recruiting Primary effusion lymphoma studies with HealthSpark.
Find actively recruiting studies for Primary effusion lymphoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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