Living Well
with a Myeloproliferative Neoplasm (MPN)
A Guide for Patients and Caregivers
Dr. Krisstina Gowin
This resource was supported through a sponsorship by Incyte Corporation.
The content of this resource was developed independently from the sponsor.
First Edition Copyright © 2019 Spry Publishing LLC
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Paperback ISBN: 9781938170928
Disclaimer: Spry Publishing LLC does not assume responsibility for the contents or opinions expressed herein. Although every precaution is taken to ensure that information is accurate as of the date of publication, differences of opinion exist. The opinions expressed herein are those of the author and do not necessarily reflect the views of the publisher. The information contained in this book is not intended to replace professional advisement of an individual’s doctor prior to beginning or changing an individual’s course of treatment.
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Dedication
In loving memory of Linda Gowin.
Your light continues to shine bright in our hearts.
Acknowledgements
Thank you to my husband and two daughters for
keeping me balanced, inspired, and joyful.
Thank you to Ruben Mesa, M.D. for your ongoing mentorship
and guidance. Your contributions to patients with
myeloproliferative neoplasms are profound and global, and
your vision for the future of medicine is pioneering and innovative.
Contents
Foreword by Dr. Ruben Mesa 6
Introduction 9
Chapter 1: Understanding Myeloproliferative Neoplasms (MPN) 10
Disease Spectrum
The MPN Symptom Burden
Special Topics in MPNChapter 2: Monitoring Your MPN Disease 28
Finding a Specialist
Understanding the Complete Blood Count
Understanding the Bone Marrow Biopsy
When is it Time to Change Treatments?
Monitoring the MPN Symptom BurdenChapter 3: Wellness In MPN – Part One 40
What is Integrative Medicine?
Why is Integrative Health Important in MPN?
Lifestyle: The Backbone of Integrative Health Nutrition ExerciseChapter 4: Wellness In MPN – Part Two 70
Sleep Health
Stress Reduction
Spiritual Care
Rediscovering Joy
The Wellness Plan
Complementary Therapies
Contents
Chapter 5: Managing MPN-Related Symptoms:
An Integrated Approach 84
Fighting Fatigue
Preventing Weight Loss
Controlling Pruritis
Managing Pain
Maintaining Sexual Health
Treating Psychological Health
Addressing Sleep DisordersChapter 6: Getting Quality Care 98
Taking an Active and Informed Role
Getting a Second Opinion
Communicating with Your Healthcare TeamChapter 7: Patient & Caregiver Support 114
Developing a Support System
Important Conversations
Care for the CaregiverResources 132Sources 136Index 146
Foreword
LIVING WELL with a Myeloproliferative Neoplasm (MPN), the title of this wonderful book, summarizes the goal of the author, Dr. Krisstina Gowin, very well. Dr. Gowin has been touched by cancer in her family and took away from that experience the need to bring both more humanity and a holistic approach to cancer care and support. Dr. Gowin, who has long had an interest in improving the care of patients with MPNs—whether essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF)—also studied at the world-renowned Integrative Medicine Fellowship at the University of Arizona under the famous Dr. Andrew Weil on holistic care. She has a personal goal to weave together the best of our standard MPN care, with the most effective integrative medicine techniques, thus achieving balance for MPN patients.
Meanwhile, her goal for this book is to provide a resource for MPN patients, providing essential information along with tools that allow patients and their caregivers to play an active role in the management of their disease. In fact, there is a long history of patients with MPNs working to create a dynamic community for discussion and interactions, advocating for each other, and helping steer and amplify the focus of research on their diseases into meaningful areas. This patient community partners closely with hematology colleagues to advance the understanding and treatment of MPNs—trying many approaches to actively help them live well, despite the limitations of their MPN.
Joyce Niblack, J.D. and Robert Rosen are both exceptional examples of MPN patients who have given generously of their time and talents to advance MPN patients “living well.” Although we have lost both Joyce and Robert to their disease, their call-to-action remains alive and vibrant. Robert Rosen helped
