Most of us don’t know a lot about myeloproliferative neoplasms (MPNs). If you’ve recently been diagnosed with an MPN, it might be hard to know where to start when getting educated about the disease and what the available treatments have to offer. Especially during these early stages, getting quality information and advice from your doctor is crucial to giving you an idea of what to expect and equipping you for the steps ahead.

What Do I Need to Know About This MPN?

Getting educated about the specific MPN you’ve been diagnosed with, as well as MPNs in general, will help you make important decisions about your health as you begin seeking treatment. Ask your doctor about both your diagnosis and your prognosis. What are the causes and symptoms of this specific NPM? And what are things likely to look like going forward? Having an idea of the possibilities ahead will not only help you in being proactive about your health, but can also help demystify what might seem like a confusing process ahead.

Where Can I Find Trustworthy Resources Online?

This may seem like a strange question now, but it will come in handy later. If you’re the type to scour the internet in search of medical advice, you’re not alone. It can be tempting to seek answers to your health questions, especially in the face of a disease that isn’t widely known and understood. While there are certainly some helpful resources on the web, there are others touting half-baked information as cut and dried truth. Your doctor will be able to direct you to reputable sources you can check out as questions come up. (The research page on our website is a great place to start.)

What Are My Options For Treatment?

We’re still seeking a cure for most MPNs. Still, there is a variety of treatments that have been very effective in treating patients’ symptoms — some even experiencing no symptoms for an extended period of time. We’re excited to see how we can further develop interferon, a treatment that can even provide disease-altering effects. With proper monitoring and treatment, people suffering from MPNs can still enjoy longevity. Ask your doctor what your options are, and what benefits each treatment provides. Has one proven more effective than another for patients with the same disease? Does one typically come with more or fewer side effects? How much does the treatment cost, and what are some options for financing? If the first treatment you try doesn’t work the way your doctor had expected, what are some prospective next steps?

What Lifestyle Changes Will I Need to Make?

Like any disease, each MPN case is different and, therefore, each patient will present unique needs. Talk to your doctor about your current lifestyle and ask about ways to promote wellness that work for you. How might this diagnosis affect your work life, now and in the future? What will exercising and maintaining a healthy diet look like? Can your doctor suggest a counselor or support group to promote and sustain emotional well-being?

As you attend future doctor appointments and dive deeper into finding a treatment that works for you, you’ll likely find yourself asking more questions — and that’s a good thing. By keeping up a continuous dialogue with your doctor, you’ll have the peace of mind of knowing that you’re being proactive about your health and of knowing that you’ve made informed choices while pursuing treatment. Still, there are some questions about MPNs that we are still trying to answer. If you want to join us in our efforts to research and find better treatments for MPNs, consider donating. We’re hopeful that a better future is in sight.


Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..

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