Working With Your Doctor and Healthcare Team on a Treatment Plan for Myelofibrosis

This article is for people who are living with myelofibrosis (MF) and their care partners, or anyone who wants to learn more about MF. The goal of this activity is to help you talk to and work with your doctor and healthcare team throughout the diagnosis and management of MF.

You will learn about:

• What MF is and its symptoms and complications

• The different types of MF

• Ways to help manage MF and its symptoms

• Making a treatment plan with your doctor and healthcare team

• Questions you can ask

Certain medicines listed may not be approved by the US Food and Drug Administration (FDA) for myelofibrosis but are recommended by the National Comprehensive Cancer Network (NCCN).

Myelofibrosis (MF) is a type of cancer that starts in your bone marrow, the tissue inside your bones where most blood cells are made. This includes red blood cells (RBCs) that carry oxygen, white blood cells (WBCs) that help fight infections, and platelets that help blood clot.

MF is a type of myeloproliferative neoplasm (MPN), a group of rare blood cancers that change how bone marrow makes cells. With MF, your bone marrow makes abnormal blood cells, as well as fibers that can clump together into scar tissue. As more scar tissue forms, your bone marrow has less room to make new blood cells. This can lead to symptoms and complications (additional problems).

Most symptoms and complications happen when your bone marrow can't make enough normal RBCs, WBCs, or platelets.

These can include:

• Anemia (not enough healthy RBCs) that can lead to weakness, fatigue (tiredness), shortness of breath, pale skin, and confusion

• Neutropenia (not enough healthy WBCs) that can lead to problems fighting infections

• Thrombocytopenia (not enough platelets) that can lead to easier bleeding and bruising

• Thrombocythemia (too many abnormal platelets) that can lead to blood clots and stroke

• Other symptoms can include night sweats, itchiness, fever, bone pain, low appetite, and weight loss

Symptoms can also happen when organs that help you make blood cells during a shortage swell, such as your spleen (splenomegaly) or liver (hepatomegaly). These symptoms can include stomach and back pain, bloating, and feeling full.

There are 2 main types of MF:

• Primary, which happens without an earlier or previous MPN

• Secondary, which happens when another MPN happens first, such as essential thrombocythemia (ET) or polycythemia vera (PV)

Both primary and secondary MF can sometimes develop into a type of blood cancer called acute myeloid leukemia (AML) that can progress (get worse) quickly.

Many people may not have MF symptoms at first. For some, it can be years before symptoms happen. During this time, your doctor may recommend observation where they monitor you closely.

When treatment is recommended, it will depend on your symptoms and how they impact your quality of life, any other health conditions you have and medicines you take, your test results, and the chances of MF progressing. Because primary and secondary MF can have similar symptoms, they are often managed in similar ways.

The goals of treatment will be to help relieve or control symptoms, improve your blood counts, and slow or stop MF from getting worse.

Ways to help manage MF and its symptoms, alone or in combination, that your doctor or healthcare team member may recommend can include:

• Medicines to improve symptoms, shrink your spleen, or help your bone marrow make RBCs or platelets

• Blood transfusions to help increase RBCs or platelets

• Surgery or radiation therapy on your spleen to help improve symptoms

• A bone marrow transplant to replace your bone marrow with healthy bone marrow

• Joining a clinical trial

• Supportive care to help your quality of life

Together, you and your doctor or healthcare team member can make a treatment plan that fits your individual needs. Be sure to let them know about your personal preferences for treatment.

You can ask them about:

• What to look for regarding symptoms

• All your treatment options

• How, when, where, and for how long treatment will be given

• Side effects that may happen and ways to help manage them

Having open and honest communication with your doctor and healthcare team is key. Be sure to ask about what may happen during treatment and how MF may progress over time. Tell them about any symptoms and side effects, if they change or get worse, and how they affect your daily life. Using a journal or diary can help.

You can also talk in advance about plans in case you need to change treatment or if MF gets worse. It's important to never stop treatment without talking to your doctor or healthcare team member first. Suddenly stopping certain treatments may cause symptoms to return quickly and can even be life-threatening.

It's important to know that you are not alone. Your doctor and healthcare team are there for you and can help you find other support as well.

Questions you can ask them can include:

• What symptoms should I look for, and when should I report any changes?

• What treatments are available?

• What side effects may happen, and how can we manage them?

• How will we know if treatment is working?

• Are there any lifestyle changes I should make?

• Is there a clinical trial I can join?

• Are there other healthcare team members I should see?

• How can I make sure I have the best quality of life possible?

• What should I do if I feel stressed or depressed?

• Is there a support group I can join?

• When can I find more information and resources?

Congratulations!

You have successfully completed the program Working With Your Doctor and Healthcare Team on a Treatment Plan for Myelofibrosis.

View Additional Materials on this topic that you may find useful:

Primary Myelofibrosis

Chronic MPNs Treatment

Living With Primary Myelofibrosis

Talking With Your Healthcare Team

Questions to Ask Your Doctor About Treatment

MPN Research Foundation -- Patient Support Groups