Rare Disease Roadmap: Myelofibrosis
- Health Topics
- Cancer
- Rare Disease Roadmap: Myelofibrosis
Journey Overview
Myelofibrosis (MF) is a disease that causes scarring in the bone marrow, the soft, spongy tissue found in the center of most bones. MF is a myeloproliferative neoplasm, a blood cancer where the bone marrow produces abnormal blood cells in abnormal amounts. It can occur on its own or it can begin with another blood disorder. People living with MF may experience anemia, lowered immunity, bleeding, and other symptoms related to low numbers of healthy blood cells. If you or a loved one is living with MF, this guide provides information to help you better understand the healthcare providers that you will work with, what questions you should be asking at appointments, and the different aspects of treatment.
Your Multidisciplinary Team
People who are living with MF will work with a team of healthcare providers with different specialties. This team can include:
Hematologist-Oncologist
Treatment for MF is typically overseen by a hematologist-oncologist. A hematologist-oncologist is a medical doctor who specializes in the treatment of blood cancers and other blood disorders. Some hematologist-oncologists and cancer care centers provide expertise in myeloproliferative neoplasms (MPNs) like MF.
Radiation oncologist
A radiation oncologist specializes in radiation therapy, the use of high doses of intense energy to destroy diseased cells. Treatment for MF may involve radiation therapy to shrink an enlarged spleen, target blood cells growing outside the bone marrow, or as preparation before a bone marrow transplant.
Oncology Nurse
Nurses play an essential role in care and treatment for any medical condition. For a person with MF, a healthcare team will often include an oncology nurse. An oncology nurse is a registered nurse (RN) with specialized training in cancer treatment. An oncology nurse often plays a central role in coordinating care.
Additional Team Members
A person being treated for MF may work with a variety of other healthcare providers who specialize in different aspects of care. Other members of a team can include additional oncologists, nurse practitioners, surgeons, an oncology social worker, a primary care provider, and a mental health professional.
Myelofibrosis Treatment Options
- Treatment is different for everyone. For most people, the goals of treatment are to control symptoms, prevent complications, and improve quality of life.
- Low-risk cases that are not causing symptoms may only require monitoring, with regular checkups to check for disease progression.
- Treatment often includes anti-cancer medications to lower the number of blood cells (which will lower the number of abnormal blood cells).
- Therapies to address anemia (low red blood cell counts), shrink enlarged organs, and boost healthy blood cell production can also be a part of treatment.
- Some people may be cured with an allogenic stem cell transplant, but most people will not be candidates for this procedure.
Your best source of information about treatment options will be your healthcare team. Work with your providers to understand what treatment options are available, the potential risks and benefits, and how different therapies can achieve different goals.
The Conversation: Questions for Your Healthcare Team
Good communication with your healthcare team is essential to understanding your diagnosis, understanding your treatment options, and making treatment decisions. Use these questions to help during your appointment.
What are the most important things I should know about my diagnosis?
- What is causing the myelofibrosis (MF)?
- What is MF, and how does it affect my bones, blood cells, and health?
- Is my MF considered high risk or low risk? What do these terms mean?
- How can MF change over time? What changes do I need to look for?
- Are there additional tests that can tell us more about my diagnosis?
What treatment do you currently recommend?
- Why do you recommend this treatment approach?
- How does this treatment work? What is the goal of this treatment?
- How will we know if this treatment is working? What will happen if this treatment does not work?
- Are there potential side effects or risks that I need to know about?
- What will treatment cost? Who can I talk to if I am concerned about the cost of treatment?
What can I do to get the most out of treatment?
- What lifestyle changes should I make?
- How will MF affect normal activities and day-to-day life?
- How often will I need follow-up appointments and exams?
- Where can I learn more about MF?
- Are there resources or specialists you recommend that I work with?
If you have a question about any aspect of your diagnosis or care, your healthcare providers will be your best source of information.
Join the Social Conversation:
#Myelofibrosis #MyeloproliferativeNeoplasms #MyelofibrosisWithAnemia
More Information for Patients and Caregivers
Article
Why Does Myelofibrosis Cause Anemia?A look at what is happening to red blood cells when a person has myelofibrosis.
Article
A Closer Look at Treatment for MyelofibrosisLearn about the anti-cancer medications and other therapies used to treat this rare form of blood cancer.
Article
Living with Myelofibrosis and Taking Care of Mental HealthHow to make your mental well-being a priority in your treatment for myelofibrosis.
