Living with Myeloid neoplasm associated with FGFR1 rearrangement
A rare blood cancer (8p11 myeloproliferative syndrome) that can involve both myeloid and lymphoid cells.
Understanding Myeloid neoplasm associated with FGFR1 rearrangement
People can develop both myeloid cell cancer and lymphoid cell cancer. It can occur at any age. It usually starts as a myeloproliferative disorder (a high number of white blood cells), often with extra eosinophils. Many also develop lymphoma, most often in T cells. Most people go on to develop acute myeloid leukemia. The spleen and liver may become enlarged.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Tiredness (fatigue)
- Night sweats
- High white blood cell count
- Swollen lymph nodes
- Enlarged spleen and liver
- No symptoms in some people
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 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 the condition is linked to an FGFR1 gene rearrangement. It doesn't describe the cause in more detail.
Also known as: 8p11 myeloproliferative syndrome; 8p11 stem cell leukemia/lymphoma syndrome; 8p11 stem cell syndrome; chromosome 8p11 myeloproliferative syndrome; myeloid and lymphoid neoplasm with fgfr1 abnormality; myeloid and lymphoid neoplasm with fibroblast growth factor receptor 1 abnormality
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 Myeloid neoplasm associated with FGFR1 rearrangement.
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