Your Guide to Managing a Myelofibrosis Diagnosis

Being diagnosed with myelofibrosis can be difficult and understanding all treatment options is overwhelming. Patients recently diagnosed or relapsed with myelofibrosis may be wondering what the right next step would be.

It doesn’t have to be done alone.

We’ve created an actionable guide that lays out the considerations when dealing with a myelofibrosis diagnosis to ensure no step is missed and to help manage the process.

Your Guide to Managing a Myelofibrosis Diagnosis

Step 1: Understanding Myelofibrosis

Understanding Myelofibrosis

Myelofibrosis (MF) is a type of chronic leukemia and is one ofthe rarest forms of bone cancer. MF slowly replaces healthybone marrow, which produces all blood cells, with scar tissue. When the bone marrow can no longer produce the neededamount of blood cells, symptoms such as anemia, weakness,bone pain and fatigue emerge.

Understanding Myelofibrosis - MF
MF normally develops at a slow pace, andmany people are symptom free for manyyears.
Understanding Myelofibrosis

Step 2: Understanding Your Specific Diagnosis

Understanding Your Specific Diagnosis

Understanding Your Specific Diagnosis

What genetic mutation caused your Myelofibrosis (MF)?

  • Myelofibrosis develops when a genetic mutation of the blood stem cells occurs.
  • 50-60% of all MF mutations are of the Janus kinase 2 gene (JAK2)

Is your MF primary or secondary?

  • MF can develop on its own (primary) or as a result of another autoimmune disorder.
  • 10-15% of all MF cases begin as Polycythemia Vera (PV) or essential thrombocythemia (ET).

Dynamic International Prognostic Scoring System (DIPSS) classifies MF based on risk.

  • DIPSS scores are either low risk, intermediate-1, intermediate-2, or high risk.

Step 3: Understanding the Standard Treatments

Understanding the Standard Treatments

Treatments for Myelofibrosis (MF) vary based on many factors including genetic mutation, origin, and staging of the disease. Standard treatments include:

Targeted Drug Therapies
  • Ruxolitinib, a medication that targets gene mutations in Myelofibrosis
Radiation Therapies
  • Used to treat enlarged spleen, bone pain, and tumors
Splenectomy
  • The surgical removal of the spleen when it is too large and causing severe symptoms
Stem Cell Transplantation
  • Allogenic stem cell transplantation (ASCT) is the only current treatment that has the ability to actually cure MF
Understanding the Standard Treatments

Step 4: Understanding Research Treatments

Understanding Research Treatments

Around 100 Myelofibrosis (MF) clinical trials are currently active in the United States! These trials are investigating new treatments and detection methods that could save lives in the future!

Current Clinical Trials are researching new:
  • JAK inhibitors
  • Histone deacetylase (HDAC) inhibitors
  • Immunomodulatory drugs
  • And more

Participating in a clinical trial not only progresses much needed research, but gives patients access to these new innovative therapies years before the general population.

Understanding Research Treatments

Step 5: Building Your Support System

Building Your Support System

You do not have to face your Myelofibrosis diagnosis alone.

  • Family and friends: Help with child care, transportation, and house maintenance
  • Doctor and nursing staff: Your primary cancer care and treatment team
  • Genetic specialists: Find gene mutations and inherited cancer risk
  • Nutritionists: Manage diet before, during, and after cancer treatment
  • Therapists: Address the emotional effects of your diagnosis
  • Social workers: Help with discharge planning and finding home health care
  • Support or advocacy groups: Assist you with navigating the cancer landscape
Building Your Support System

Step 6: Finding Resources

Finding Resources

Locating the appropriate resources may seem overwhelming. Thankfully, there are programs designed to help.

  • Sign up for local cancer groups or Myelofibrosis specific groups to connect with other people going through a similar journey.
  • Reach out to local patient advocacy groups to get connected to education, care, and financial programs as needed.
  • Utilize your clinic or hospital's community resource manager or social worker to receive a tailored resource guide just for you.
Finding Resources

Step 7: Take A Step Forward

Take A Step Forward

Take A Step Forward

Towards a positive outcome.

Be your own advocate and look for proactive options, such as clinical trials. Decide on a treatment plan and stay positive during your cancer journey. Know that there are resources and people around you who are willing to help.

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