Patient Stories

Woman With Myelofibrosis Gets Unapproved Drug With Help of Care Team

How can you advocate for yourself with a clinical trial drug if it’s later taken away? Watch as Sandra Dillon shares her story of her fedratinib trial.

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How Do You Know When It’s Time to Switch MPN Therapies?

What physical symptoms indicate a necessary change in the course of MPN therapy? What factors do medical experts consider before making a switch? Watch now to find out.

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How Getting to the Right MPN Specialist Turned One Man’s Life (and Prognosis) Around

A 71-year-old MPN patient Nelson Patz was initially treated for Lyme disease and experienced painful, severe side effects but today he feels stronger than ever. How did he get to the care he needed? Watch now as he walks us through the twists and turns of his treatment journey.

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Progression in MPNs: Allaying Fears and Taking Action

In part two of our Partners series, leading expert Dr. Mark Heaney and MPN patients Ann and Jonna discuss risk stratification, progression, potential complications and actionable steps to take to access the best care available.

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Advice From Cancer Survivor Sajjad Iqbal on Becoming an Empowered Patient

We spoke with Dr. Sajjad Iqbal on his experience with head and neck cancer. Watch as he describes his personal perseverance and commitment to being an empowered patient.

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You’ve Been Diagnosed With an MPN: Now What?

This Partners program features Dr. Laura Michaelis, MPN patients and Andrew Schorr sharing unique perspective related to diagnosis, disease monitoring, treatment decisions, and what life is like with an MPN.

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Approaches for Coping Day-to-Day With an MPN

Our panel of experts discuss the impact of a rare cancer on daily life and share tips and strategies to live well with an MPN. Watch now to learn ways to live your best life with an MPN.

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Andrea’s Story: The Fight to Live Well, Not Just Live Longer With Myelofibrosis

Why should you remain hopeful on your MPN journey? Andrea, patient advocate and 19-year MPN survivor, shares her inspiring story as a proactive patient.

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Samantha’s MPN Story: Dealing With a Diagnosis in Your 20s and Beyond

What’s it like to be diagnosed with MPN as a young adult? Watch now to hear Samantha walk us through her experience after being diagnosed with ET at only age 26.

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Page last updated on November 7, 2013