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.
Step 1: 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.
Step 2: 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:
- Ruxolitinib, a medication that targets gene mutations in Myelofibrosis
- Used to treat enlarged spleen, bone pain, and tumors
- The surgical removal of the spleen when it is too large and causing severe symptoms
- Allogenic stem cell transplantation (ASCT) is the only current treatment that has the ability to actually cure MF
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!
- 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.
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
Step 6: 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.
Step 7: 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.
Would you like to learn more?
Finding this content to be helpful?
Share your email address with us to receive more information about how to navigate a cancer diagnosis and some bonus info detailing how we can help walk you through it all.
Interested in Myelofibrosis Clinical Trials?
Massive Bio is 4x more successful in finding cancer clinical trial matches for patients than any other service provider. Partner with our patient advocates to learn how you can access myelofibrosis clinical trials matched to your unique cancer.