How to manage expectations about advances in myelofibrosis treatment

Getting your head around myelofibrosis (MF) is tricky. It can look and feel different at different times and can vary greatly among people who live with its symptoms and potential complications.

If you’re feeling uneasy that you don’t fully comprehend everything about your own disease, rest assured, you are not alone. I am a health and science writer who has covered the latest updates in blood cancers for the past several years. I often attend major medical meetings focused on hematology, including chronic blood cancers such as myeloproliferative neoplasms (MPNs), which include myelofibrosis. I am someone who lives with MF and a patient advocate who regularly speaks to patients in treatment for MPNs and specifically MF.

And guess what? I don’t fully understand a lot about these conditions, either.

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The truth is that the researchers and specialists focused on these cancers are still learning about them every day. I remember being at an international medical conference a few years ago and hearing the latest research and reports on current clinical trials. The presenters were so confident about their findings, and in some cases suggested that what they have learned will change practices in patient care. But in the coffee lines between sessions, the buzz was about what some of it really means; how it will be applied in their day-to-day practices.

A good example is the number of new options for MF treatment in just the last three years. The movement is to combination therapies, with both medications approved by the U.S. Food and Drug Administration and those showing good results in trials. The question still under discussion by experts is what and when; which medications in what order and in what combination for which patients. The point is that the answers are still fluid.

Try to remember this if you are feeling concerned that you don’t know for certain what’s best or next for your myelofibrosis, or that of a loved one.

Perhaps knowing how fortunate we are living with MF at a time of such extraordinary progress will give you hope, rather than angst. You don’t know all of the answers because the answers are not yet fully understood. What you can be sure of is that today’s MF is not the MF of yesterday.

The uncertainty of MF is palpable. It used to keep me up at night. I would not allow myself to think much about it during the day, then the minute I closed my eyes, no matter how exhausted I was, my thoughts simply crushed my need for sleep.

That’s not the case anymore. Yes, I am fortunate that a combination therapy (an approved JAK inhibitor coupled with a drug still in clinical trials) has significantly improved my symptoms and quality of life. But the uncertainty remains. What happens if and when the drugs stop being effective? What if my MF progresses to a more advanced blood cancer, like acute myeloid leukemia? Are the occasional drops in my blood counts an acceptable part of the ebb and flow of myelofibrosis or does it mean something is changing?

Yet, today I rest well most nights (though sometimes with a little help from a prescribed sleep aid). The difference is my confidence. With so many new treatments available now and potentially in the near future, I truly trust that whatever happens is likely to be manageable.

I believe that managing our expectations is half the battle when living with a chronic blood cancer like myelofibrosis. My expectation is that scientific advancements in the field of MPNs/MF are changing at such a speed that hope overpowers the fear of uncertainty.

Note: Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.