When you have a rare condition like myelofibrosis (MF), you may go a long time without any signs. Other times, you may feel super tired, can’t stop losing weight or have fevers or bruises that come out of nowhere. But these are common symptoms for many other conditions. So, when routine blood tests or a checkup point to possible blood cancer, it can come as a real shock.
The blood cancer team at Cleveland Clinic understands this. And we’re here to guide you through the next steps. Even though this disease is considered rare, it’s not uncommon to us. We know what it takes to make a correct diagnosis. And we’ll help you move forward with myelofibrosis treatment that matches your specific needs — and gets the best possible results.
Why Choose Cleveland Clinic for Myelofibrosis Care?
Skilled, collaborative providers:
Providers from different specialties come together as a care team that plans your treatment, keeps an eye on your progress and guides you through recovery and follow-up care. We build this team based on your unique needs and diagnosis.
Innovation and research:
We participate in myelofibrosis clinical trials to find better ways to treat this challenging condition and its symptoms. If you qualify, clinical trials give you access to therapies that aren’t available elsewhere.
Patient-centered care:
Our experts take the time to listen and answer your questions. We want to hear how myelofibrosis affects your life, so we can choose the best treatments — ones that lessen your side effects, slow disease progression and help you keep doing the activities you love. Meet our team.
Virtual visits:
Not feeling great? Rather stay curled up on the couch than drive to an appointment? Virtual visits are a convenient alternative to seeing your provider in person for some appointments. You get the same expert care from the comfort of your home, using your smartphone, computer or tablet.
National recognition:
Cleveland Clinic is a trusted healthcare leader. We're recognized in the U.S. and throughout the world for our expertise and care.
Diagnosing Myelofibrosis at Cleveland Clinic
Myelofibrosis is a type of myeloproliferative neoplasm — a rare blood cancer. This chronic (ongoing) leukemia makes too many abnormal blood cells that eventually replace normal cells. It causes fibrous scar tissue to form in your bone marrow (the soft, spongy center of the bones).
There are two kinds of myelofibrosis:
- Primary: Occurs on its own.
- Secondary: Occurs as a result of the progression of pre-existing blood cancers, including essential thrombocythemia (post-ET myelofibrosis) and polycythemia vera (post-PV myelofibrosis).
It takes a skilled team to diagnose myelofibrosis because you may not have symptoms at first. But eventually, it can cause things like anemia, thrombocytopenia or an enlarged spleen, among other things. Untreated, MF can progress into an aggressive blood cancer called acute myeloid leukemia (AML).
What to expect at your first visit
Hearing you may have a rare blood cancer can be a shock. And we’re here to help you learn what to expect from diagnosis, treatment and beyond. At your first appointment, your provider will spend time getting to know you. They’ll also ask you to share your story. Knowing what you’re experiencing is an important part of making a diagnosis.
You’ll want to be prepared to answer questions about the kind of symptoms you’re having, how long you’ve had them and how they’re affecting your life. Your provider will also go over your health history and ask you about your family’s health history, too. They’ll also do a physical examination and order some tests.
Testing for myelofibrosis
To help us confirm a diagnosis, you may have:
- Complete blood count (CBC): With this test, we measure white blood cells, red blood cells and platelets in your blood. MF often leads to low red blood cell counts (levels).
- Peripheral blood smear (PBS): This test looks for abnormally shaped or immature cells called blast cells.
- Blood chemistry tests: We can measure the levels of certain substances in your blood to see how your organs work with these tests.
- Imaging tests: We may do a CT scan (computed tomography scan), MRI (magnetic resonance imaging) or ultrasound to see if you have an enlarged liver (hepatomegaly) or spleen. Imaging can also show us if you have scar tissue in your bone marrow.
- Bone marrow aspiration: This option tests bone marrow fluid for signs of myelofibrosis.
- Bone marrow biopsy: We use this test to look at a bone marrow sample for abnormal cells and scar tissue.
- Gene mutation analysis: This test checks your blood and bone marrow cells for signs of genetic mutations (changes) linked to myelofibrosis.
Your test results help us confirm your diagnosis and plan personalized treatment. We can also learn more about your risk for myelofibrosis progressing to AML. Once we understand your risk level, we can better plan your treatment.
Second opinions for myelofibrosis
Now that you’ve learned you may have a rare blood cancer, you might feel anxious, worried and overwhelmed. But you also need to feel confident that you have the best care team. You’ll want one that’ll listen to your concerns, answer your questions and give you the best possible care. That’s why we encourage second opinions.
Our highly skilled rare blood cancers team is here for you. They’ll walk you through what to expect, ease your fears and help you find the best treatment for your needs. And because we know that cancer doesn’t wait, we always try to schedule your appointment with us as soon as possible. A second opinion can give you peace of mind, knowing you’re in the most capable, compassionate hands.
Meet Our Myelofibrosis Team
Cleveland Clinic’s team-based approach to treatment means you’ll have a care team of different providers from different specialties — all selected based on your unique needs. Your care team may include:
- Hematologists.
- Radiologists.
- Pathologists.
- Nurse practitioners.
- Social workers.
- Care coordinators (caregivers who keep you informed of your treatment options and advocate on your behalf).
This team stays with you throughout your diagnosis, treatment and beyond. They meet weekly to talk about your progress and adjust your treatment plan as needed.
Providers Who Treat Myelofibrosis
Locations
Our healthcare providers see patients at convenient locations throughout Northeast Ohio and Florida.Treating Myelofibrosis at Cleveland Clinic
Your care team explores all options, including the latest clinical trials, as they craft the most personalized treatment plan. We don’t just plan the medical side of things — we also consider your goals and quality of life to be sure you get the latest treatment that focuses on you.
If you have mild myelofibrosis but no symptoms, you may not need treatment right away. Instead, we may do “watchful waiting.” This means your care team will keep a close eye on you, run regular tests and start treatment if your condition progresses.
If you need treatment, we usually recommend a combination of options based on your symptoms and disease risk. These treatment options may include:
JAK inhibitors
JAK (Janus kinase) inhibitors force stem cells to stop making blood cells. These medications help with symptoms like an enlarged spleen, night sweats, itching, weight loss and fever. You may take:
- Ruxolitinib (Jakafi®).
- Fedratinib (Inrebic®).
- Pacritinib (Vonjo®).
These medications are effective but have side effects. We’re studying new treatments that are less likely to lead to anemia and thrombocytopenia, as well as deepen or regain lost responses.
Treatments for anemia
Anemia is common with myelofibrosis. Your provider may recommend treatments to help with the symptoms and increase red blood cell production, like:
- Erythropoiesis stimulation agents.
- Luspatercept.
- Androgens like danazol (Danocrine®).
- Immunomodulators like interferon alfa, thalidomide (Thalomid®) and lenalidomide (Revlimid®).
- Blood transfusions.
Treatments for an enlarged spleen
JAK inhibitors can treat an enlarged spleen. In rare instances, you may also need radiation therapy or surgery to remove your spleen (splenectomy).
Hematopoietic (stem) cell transplantation
Allogeneic hematopoietic cell transplantation (HCT) replaces your cancerous blood cells with stem cells from a healthy donor. It effectively treats people with high-risk MF with good results. Some people may not be healthy enough for a transplant. Your provider will go over the best options. And you can ask them about reduced-intensity transplantation, which some people may tolerate better.
Palliative Care
If your symptoms are getting in the way of your quality of life, your provider may recommend palliative care. You get a support network of providers experienced in helping you navigate your diagnosis and treatment — physically, mentally, emotionally and spiritually.
Life After Myelofibrosis Treatment
Once treatment is done, you’ll move to the next phase — follow-up care. This means you’ll have regular visits with your care team and do tests to make sure the cancer hasn’t come back. Staying in touch with your providers like this means that we can catch a recurrence early and quickly start treatment.
Taking the Next Step
Diagnosing myelofibrosis isn’t always simple. But if you have vague, unexplained symptoms or abnormal test results, it’s time to get expert help. Cleveland Clinic is at the forefront of the latest therapies for this condition. And we combine this leading-edge treatment with compassionate support so you can feel more like yourself again.
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