Asking Questions About Treatment Options for MPN

A patient with myeloproliferative neoplasm (MPN) advocates for proactive communication with healthcare providers to explore all treatment options, including new drugs and clinical trials, stressing the importance of understanding treatment rationale and conducting independent research before making decisions.

Ned M. Weinshenker, a patient advocate, was one of the seven MPN Heroes honored at an in-person event. His nominator described his efforts to help others with MPNs based on his personal experience with myelofibrosis.

CURE® sat down with Weinshenker to discuss his experience with MPN and how he uses it to help others with the condition. He advises patients with MPN to ask questions of their health care team to fully understand the rationale behind treatment decisions.

Transcript:

Be proactive with your health care team. Find out all the opportunities there are, whether there's a new drug available, whether there's a clinical trial available. There are now four approved JAK inhibitors. The big question to the doctors is, which one should I start this patient on? And you should ask if the — if the doctor said I'm going to start you on ruxolitinib (Jakafi) or fedratinib (Inrebic). Why? There are many different [ones]. Why this one? And you should get a good answer, not just the salesman was in this afternoon. That's what I just heard about. Because, you know, that's the way a lot of detailed people work.

You should get to the bottom of it. You should read about it before you actually take it and understand what the pros and cons are.

And if you don't like any of the drugs that are out there, get in a clinical trial for something else. Go to ClinicalTrials.gov. There are dozens [of trials] at this point, different types of treatments.

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