Living with Acute myeloid leukemia with CEBPA somatic mutations
A subtype of acute myeloid leukemia linked to changes in the CEBPA gene in blood-forming cells of the bone marrow.
Understanding Acute myeloid leukemia with CEBPA somatic mutations
Immature blood cells called blasts grow in the bone marrow and blood, and rarely in other tissues. Symptoms come from the bone marrow not making healthy blood cells. They can also come from leukemia in other sites, such as swollen gums or an enlarged spleen.
Signs & symptoms
Symptoms vary from person to person. GARD's summary says they may include:
- Low red blood cells (anemia)
- Low platelets (thrombocytopenia)
- Tiredness (fatigue)
- Bleeding and bruising
- Infections that keep coming back
- Bone pain
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, cancer specialists and genetic specialists.
- 3Consider genetic testing
Changes in CEBPA are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists); Genetic specialists (geneticists)
- 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 Blood Cancer United 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 this subtype involves somatic (acquired) changes in the CEBPA gene in the leukemia cells.
Also known as: acute myeloid leukaemia with mutated cebpa; acute myeloid leukaemia with non-germline mutated cebpa; acute myeloid leukemia with ccaat/enhancer binding protein alpha somatic mutation; acute myeloid leukemia with mutated cebpa; acute myeloid leukemia with non-germline mutated cebpa; aml with cebpa somatic mutations
Patient organizations
- Blood Cancer UnitedBlood or bone marrow disease · United States
- HealthTree FoundationBlood or bone marrow disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Acute myeloid leukemia with CEBPA somatic mutations.
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