Living with Hairy cell leukemia
A rare, slow-growing blood cancer in which the bone marrow makes too many B cells that look "hairy" under a microscope.
Understanding Hairy cell leukemia
B cells (lymphocytes) are white blood cells that fight infection. As leukemia cells increase, fewer healthy white blood cells, red blood cells, and platelets are made. It is diagnosed with a bone marrow biopsy and blood tests, and the leukemia cells show a specific change in the BRAF gene. It is usually noticed in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Enlarged spleen without swollen lymph nodes
- Fever
- Night sweats
- Fatigue
- Weight loss
- Low blood cell and platelet counts
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 American Cancer Society 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 says the cause is still unknown. The leukemia cells show a specific change in the BRAF gene, which increases the growth and spread of cancer cells.
Also known as: classic hairy cell leukemia; hairy cell leukemia (clinical); hcl; hcl - hairy cell leukemia; hcl-c; leukemic reticuloendotheliosis
Patient organizations
- American Cancer SocietyHairy cell leukemia · United States
- Blood Cancer UnitedHairy cell leukemia · United States
- HealthTree FoundationHairy cell leukemia · United States
You are more than your diagnosis
Perspectives from people navigating life with Hairy cell leukemia.
Explore research for Hairy cell leukemia
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