Tips for Confronting Myelofibrosis
by Dr. C.H. Weaver M.D. 9/2023
Information and support are key to being an empowered patient and optimizing treatment outcomes. The following tips will help you navigate a diagnosis of Myelofibrosis and understand your treatment options to best advocate for yourself. If you have tips to share or want to connect with other patients join the conversation on at the MPN CancerConnect community here.
Myelofibrosis is Relatively Rare
Because Myelofibrosis is uncommon its extremely important to have a second opinion at a cancer center where there’s a lot of familiarity and experience with myelofibrosis and myeloproliferative neoplasms.
Consider a Second Opinion
The more you can learn about your diagnosis and your treatment options, the better chance of receiving the best treatment. Getting a second opinion will help you understand ALL available treatment options and create a long-term treatment plan as well as provide reassurance to you and your family that you are receiving the most appropriate therapy. A second opinion should be obtained at a major cancer treatment program with expertise in Myelofibrosis.
Long Term Treatment Planning is Important
It’s important for patients with Myelofibrosis to realize that the only curative treatment option is hematopoietic stem cell transplantation. That’s an important consideration and a consultation is warranted at a transplant center early in order to understand if and when a stem cell transplant is a treatment option.
Ask about Clinical Trials
Ongoing research is being conducted to find new treatments for Myelofibrosis. By learning about clinical trials, you can identify opportunities that advance treatment and possibly benefit your personal prognosis. The only drug for treatment of Myelofibrosis available for the past decade was Jakafi (ruxolitinib) which effectively improves long term survival. Recently completed clinical trials have led to FDA approval of Inrebic (fedratinib) and Vonjo (pacratinib) and momelotinib’s approval is anticipated. For most patients, clinical trials should be considered if possible whether it’s for initial or later therapy.
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Anemia and Thrombocytopenia
Neither ruxolitinib nor fedratinib are great drugs for improving anemia or low blood platelet counts and both are associated with suppressing bone marrow blood cell production. Pacritinib and momelotinib are promising drugs for improving anemia and thrombocytopenia.
Be Your Own Advocate
It’s a good idea to spend a bit of time researching your diagnosis so you can have meaningful conversations with your treatment team to engage in a shared decision-making process. You can begin to learn about Myelofibrosis here and keep up to date with research news and helpful tips by signing up for the MF CancerConnect newsletter here. Myelofibrosis causes many symptoms most of which can be improved with the right treatment so never hesitate to bring your symptoms to the attention of your doctor.
Join an Online Support Community
An online support community is a great resource to help find a doctor, to share information and learn about treatment choices with other individuals in your situation. The MF Cancer Connect online support community is safe, private, and fully moderated. Moreover, patients from leading cancer programs including Harvard - Dana Farber, Roswell Park, and Ohio State among others use the community which allows patients to interact with others from America’s top cancer centers. Join the conversation here.
Be Organized
Preparing in advance for your appointment is important. Write down any questions you want to remember to ask and consider bringing a close friend or family member to each appointment to take notes from your conversation with your doctor. Consider using a recorder during your appointment – this allows you to “replay” the conversation which can be very helpful. Studies have shown that most patients retain only about 10% of what is told to them during an appointment. It’s not unusual for patients to be treated by multiple doctors. To stay on top of the treatment routine, it’s critical to record notes from doctor appointments, questions/answers for your physician, dates of appointments, test results blood cell counts, medications and dosing schedules, prescription refills and other information.
Make Sure You Understand the Risks and Benefits of Your Treatment Options
Understand the goals of treatment so you can make the most informed treatment decisions. The goal of therapy may be cure, prolong survival, or reduce symptoms and complications of the cancer. We have created a guide to facilitate a discussion with your treating physician.
Make Sure You Have an Overall Care Coordinator
Everyone needs a single point of contact who is responsible for your overall care. Without a “quarterback” the potential for miscommunication, and frustration is considerable. Make sure you have one primary care coordinator that you can contact for follow-up questions and concerns during the course of your treatment.
Connect With Others for Support and information
Cancer Connect was the first social network created for people with myeloproliferative neoplasms. Founded by oncologists to support cancer patients and their caregivers, over 40 million individuals have accessed Cancer Connect programs since 1997. Cancer Connect is used by leading cancer centers like Dana Farber, Roswell Park and The James at Ohio State to support their patients. Join the conversation, ask questions, share your experience, and learn how the best cancer centers are treating MPN's from others. Share your experience, ask a question, or start a conversation by posting on Cancer Connect.
