Sharing my fact-based hope about myelofibrosis treatment

Let’s start with the good news: If you ask Dr. Google about living with myelofibrosis (MF), a rare chronic blood cancer, much of what you read may be very outdated. That includes alarming old data about life expectancy and quality of life.

To get the real story about what living with MF can be like today, I find it’s best to stop scrolling and go directly to reliable sources, where the latest and greatest (and most accurate) news and updates are available and put into current perspective by specialists who study and treat a large number of MF patients.

Why is there so much old information about MF? Put simply, nearly everything about myelofibrosis treatment has changed in the past five years, with new and better therapies becoming widely available as recently as 2023.

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What does this mean for people like me, diagnosed with myelofibrosis in 2018? More available treatments equal a greater chance that something will improve our symptoms, prevent the progression to acute leukemia, or even, as in my case, reverse the signs of the disease itself.

I spent the last 30 years living under the umbrella of myeloproliferative neoplasms (MPNs), first essential thrombocythemia, then polycythemia vera, and now MF. Over that time, I patiently waited as we understood more and more about these related blood cancers. I experienced firsthand how treatments evolved, from one or two options with undesirable side effects and potentially serious complications, to a host of new approaches, most recently combination drug therapies.

More good news: Given the speed of scientific advancement, including multiple potential treatments currently in clinical trials, we have more of an opportunity than ever before to play an active role in the decisions about our MF care, or that of a loved one.

MF can look different for different people

One thing that is universal about myelofibrosis is that there is not much that’s universal. Yes, there are the classic signs and symptoms: bone marrow fibrosis (scarring that interferes with the production and livelihood of blood cells), anemia that causes extreme fatigue, bone pain, night sweats, and severe itching. But along with these comes a host of seemingly unrelated symptoms and complications, including brain fog, or difficulty concentrating, and increased risk of cardiovascular, liver, and kidney disease.

So, because MF can look very different in different people, the treatments are most effective when personalized. Science has taught us that MF with the presence of one gene mutation (an acquired error in our DNA) often will respond differently than when there is a mutation in a different gene associated with MF, for example, the most common JAK2 mutation vs. the less common CALR or MPL mutations. And even when two people with MF have similar genetic profiles, meaning the same mutations, a specific medication might work well for one person’s symptoms and not for the other.

You might not be thinking about how much more personalized your MF care could be. Maybe you see a respected local oncologist on a regular basis and that seems like you’re doing everything you can. But, like with any rare disease, every specialist is not equal.

I started out seeing a local oncologist who treats multiple different cancers. When I was referred to a nearby hematologist/oncologist, I had the more focused attention of a specialist in blood cancers. But given the rapidly evolving MPN/MF treatment landscape, it wasn’t a fit that I was completely comfortable with after life-threatening events put me in the intensive care unit for a week, followed by months of healing. So, for nearly eight years, I have traveled 3 1/2 hours each way to see an even more specialized doctor, a hematologist/oncologist at a major cancer center in New York City. There, she has access to the many new MF clinical trials, including the one I’ve been on since 2020 with (gratefully) amazing results.

The bottom line is this: It is essential to see a specialist who treats patients with MPNs, including MF. If you are far from a major cancer center and don’t have access to a MPN specialist, you can still arrange a periodic consultation, in person or sometimes virtually. In many cases, this will be covered by your health insurance as a second opinion. And it doesn’t mean you need to change doctors. Most community-based physicians will be willing to coordinate with a colleague who specializes in a rare disease.

Like me, you have the opportunity (and the right) to learn as much as you can about today’s myelofibrosis treatment options, tailored to you, your risks, and your symptoms.

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.