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      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

      All rights reserved under International and Pan American Copyright Conventions.

      No part of this book may be reproduced or transmitted in any form or by any means electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.

      This edition is published by

      Spry Publishing LLC

      315 East Eisenhower Parkway

      Suite 2

      Ann Arbor, MI 48108 USA

      Printed and bound in the United States of America.

      10 9 8 7 6 5 4 3 2 1

      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.

      18-852

      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 develop and found the highly impactful MPN Research Foundation, which proactively has made a huge impact on this field by directing philanthropically-gathered resources to drive research advances in MPNs and advocate on behalf of MPN patients. Joyce Niblack, J.D. broke new ground in developing online patient communities that provide real-time moral and informational support for MPN patients every day. Joyce also helped start the efforts to better understand and impact the difficult symptoms associated with MPNs. Back in 2001, Joyce came to me and shared her view that the symptoms MPN patients face were common and problematic. However, since many MPN patients overall do not look ill, they felt their healthcare providers were not responsive to their symptomatic concerns. The engagement of MPN patients in advocating and determining their own future has only grown from these examples and include many others, such as Antje Hjerpe, David Alexander, Jon Mathias and Zhenya Senyak, to name a few, along with the continued efforts of the MPN Research Foundation.

      In response to Joyce’s concerns, as well as other advocates, we conducted the first large scale assessment of MPN symptoms. Leveraging the extensive online community of MPN patients, we conducted a survey of over 1,400 MPN patients and demonstrated symptoms that were both prevalent and sometimes severe, including fatigue, night sweats, itching, headaches, bone pain, and spleen-related problems. We then realized we needed a way to capture and quantify these subjective symptoms to be able to track them (better or worse) in the context of a clinical trial,

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