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How to Navigate Life with Myeloproliferative Neoplasms

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Published on October 1, 2020

A Doctor’s Advice for Managing and Treating MPNs

Myeloproliferative neoplasms (MPNs) are a group of rare blood cancers, which are usually managed chronically as an outpatient. Treatment regimens differ from person to person, and MPNs are monitored closely for a variety of reasons. All of this is to say that navigating life with an MPN can be a confusing landscape at first, but don’t worry, because we have doctors and experts to guide you along the way.

Listen in as Dr. Mascarenhas, associate professor and director of the Adult Leukemia Program at the Icahn School of Medicine, defines myeloproliferative neoplasms, explains how to monitor them over time, gives advice on how to create a care plan with your doctor, and shares how MPN treatment is changing for the better.

Transcript | How to Navigate Life with Myeloproliferative Neoplasms

Dr. Mascarenhas: What frustrates many patients with these diseases is they can look well, but not feel well. And that's often very frustrating for patients to convey to family members or to friends who may not totally understand the nature of these diseases as they are not common like breast cancer or lung cancer or colon cancer.

What are Myeloproliferative Neoplasms?

MPNs are considered neoplasms or blood cancers. They're chronic diseases that are often managed chronically as an outpatient. And there are three main sets of MPNs. There are the Philadelphia chromosome-negative ones, which we'll talk about. And the Philadelphia chromosome-positive ones. And those are ET (essential thrombocythemia), PV (polycythemia vera), and MF or myelofibrosis.

What Should I Know About MPNs?

An important question that patients should think about and even pose to the physician or the team taking care of them is what to expect in terms of one month, one year, 10 years. I think that is very helpful because often patients may look at a one-time point and may not always take a step back and try to understand how the overarching disease process may affect them and what to consider.

These diseases are heterogeneous in the way they present and the way they behave. And no two people walk the same path and that's very important to remember. So although people can give you their own impression of what the disease is like and their experience and physicians can tell you what they've seen, I can tell patients confidently after doing this over a decade, that the experience will always be unique to that patient and will not always be guaranteed to be similar to another patient or advice that you get. So, try to get a broad understanding of what are the considerations with the disease and the treatment approaches and the goals, but also try to put that in the perspective of this month, this year, this decade.

How is MPN Treatment Changing?

This is really a reflection of our progress as a research group throughout the world, to try to improve upon the way we treat patients with these MPNs and our expectations. And the bar is higher than it was before. We are looking to significantly impact the disease at its core and change the course of the disease. So, the patients that are living with these chronic MPNs feel that they are now going to start to receive therapies that not only address aspects of the disease, but address the disease, the progression of the disease, and ultimately the outcome of the disease.

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