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  • Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    journey with a perfect ending whichever way it goes and that in the end all will be well Victoria Bartling Cover Art Lucia s Quilt Click here for new audio download Please take our online Voices of Hope Healing survey http www zoomerang com Survey WEB22ABNFZWWYW Use the right hand menu to view an online version of this guide Click here to purchase a copy of this guide Cost 1 10 copies 12 copy Please call us for quantity discounts Cost 11 copies 10 copy includes S H Click here to download a PDF version of this guide 7334K 74pg In order to view download and or print documents that are in Adobe PDF format you will need to have the free Adobe Acrobat Reader installed on your computer Acknowledgements Never Look Back Traits of a Warrior A Donor for What Those Amazing Stem Cells Got a Joke I Had Leukemia Okay I Smile The Gift of Life One Year Out Believe in Yourself and You ll Come Through with Flying Colors Time is a Friend You Will Feel the Rain on Your Face Again Inspirational Guidelines Achieving Serenity Through My Own Hands Frequently Asked Questions A Lesson in Humility

    Original URL path: http://www.nbmtlink.org/resources_support/voices/index.htm (2015-03-27)
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  • News and Events - National Bone Marrow Transplant Link
    this podcast click here This podcast is available for free on iTunes After you view this podcast webcast please take this brief survey to help with planning future programs Telephone conference documents Chronic Graft versus Host Disease Mary Flowers MD Self Management Options to Improve Symptoms Function and Well Being Sandra Mitchell PhD CRNP Living Post Transplant and With cGvHD A Patient s Point of View Ellen Frank PhD Dry Eyes Intervention Speakers Mary Flowers MD Professor of Medicine University of Washington Director Long Term Follow Up Fred Hutchinson Cancer Research Center Seattle WA Sandra Mitchell PhD CRNP Research Scientist Outcomes Research Branch Applied Research Program Division of Cancer Control and Population Sciences National Cancer Institute Bethesda MD Ellen Frank PhD BMT Survivor Coping with cGvHD Boston MA Topics What is cGvHD What are its signs and symptoms How is cGvHD treated and managed Principals of treatment and management of cGvHD When does cGvHD need systemic treatment and for how long How long can you expect your transplant team to follow you What do I need to know about Emerging Treatments Importance of clinical trials and current research Are specialty consultation centers an option for me How can I develop

    Original URL path: http://www.nbmtlink.org/CGVHDConference/index.htm (2015-03-27)
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  • Resources and Support - National Bone Marrow Transplant Link
    greffe de cellules souches PGCS du Centre universitaire de santé McGill CUSM établi à Montréal au Québec s est associé au nbmtLINK afin de développer cette version française du Resource Guide Le Guide des ressources pour la greffe de cellules souches constitue un premier pas vers l obtention et la diffusion de renseignements adaptés et destinés aux patients de greffe Cliquer ici pour commander une copie du guide Cliquer ici

    Original URL path: http://www.nbmtlink.org/resources_support/rg_french.htm (2015-03-27)
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  • Preguntas Frecuentes sobre el Trasplante de Médula Ósea/Células Madre - Resources and Support - National Bone Marrow Transplant Link
    gastos de envío y manipulación Haga clic aquí para descargar una versíon PDF de esta guía 973K 31pg In order to view download and or print documents that are in Adobe PDF format you will need to have the free Adobe Acrobat Reader installed on your computer Dedicamos este folleto a la creciente población de pacientes de trasplante de médula ósea células madre a sus cuidadores y familias El Enlace Nacional de Trasplante de Médula Ósea nbmtLINK desea que este folleto les brinde información útil aliento y esperanza Les deseamos éxito en su jornada El nbmtLINK es una organización independiente sin fines de lucro fundada en 1992 y financiada totalmente gracias a la generosidad de individuos empresas y fundaciones Las donaciones deducibles de impuestos son bienvenidas ya que nos permiten crear y sustentar programas y servicios valiosos La misión del nbmtLINK es ayudar a los pacientes cuidadores y familias a enfrentar los desafíos sociales y emocionales del trasplante de médula ósea células madre desde el momento del diagnóstico hasta la supervivencia al brindar información vital y servicios de apoyo personalizados La información que contiene este folleto no debe sustituir el consejo médico y la mención de la lista de recursos no implica nuestro patrocinio Consulte con su médico sobre sus decisiones médicas y tratamiento Agradecimientos Introducción 1 Qué enfermedades usualmente se tratan con un trasplante de médula ósea células madre 2 Cómo decido si un trasplante es lo correcto para mí o para mi hijo 3 Qué es un trasplante de médula ósea células madre 4 Cómo se obtienen las células madre que se usan en el trasplante 5 Cómo se inicia la búsqueda de un donante 6 Cómo se hace para ser donante de médula ósea o para donar sangre del cordón umbilical 7 En dónde puedo buscar información

    Original URL path: http://www.nbmtlink.org/resources_support/faq-sp/index.html (2015-03-27)
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  • Introduction : Graft Versus Host Disease: Living With the After Effects of Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    not always without permanent damage The medical care of cGVHD is a profound team effort in which success depends on close cooperation between healthcare providers patients and caregivers Chronic GVHD is the most common complication of allogeneic bone marrow transplants As transplants have become safer and more are performed the number of people who ultimately develop cGVHD has grown This has been accompanied by intensified research and clinical trials into cGVHD prevention and treatment Yet resources for people with cGVHD have been limited and scattered in numerous locations This unique book Graft Versus Host Disease Living with the After Effects of Bone Marrow Stem Cell Transplant brings together the knowledge of many experts in the field who have spent their careers helping patients and finding solutions for cGVHD It meets the immediate and urgent need for patients caregivers and families to better understand and cope with the late effects of a bone marrow or stem cell transplant We thank the National Bone Marrow Transplant Link for adding this important publication to its collection of support materials and programs for survivors and their families Steven Pavletic MD National Cancer Institute National Institutes of Health Bethesda Maryland Introduction Chapters 1 Overview of

    Original URL path: http://www.nbmtlink.org/resources_support/graft-versus-host-disease/graft-versus-host-disease-introduction.html (2015-03-27)
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  • Chapter 1 - Overview of Chronic Graft Versus Host Disease : Graft Versus Host Disease: Living With the After Effects of Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    of cGVHD Chronic GVHD can affect your skin eyes mouth lungs muscles joints liver stomach intestinal tract and genitals Often GVHD symptoms appear or worsen when immune suppression medicines are being tapered down or decreased Symptoms can be sudden such as a new skin rash Or they can be hard to notice such as a slow increase in dry eyes or mouth stiff muscles or tight skin Take note of any changes in the way you feel and report them right away to your transplant team so you can be seen and treated Risk Factors for cGVHD Risk factors for getting cGVHD are prior acute GVHD unrelated donor transplant female donor for a male recipient female donor with more than one pregnancy use of radiation during the conditioning plan before transplant use of peripheral blood stem cells Many of these risk factors cannot be changed Although there are some scientific advances in this field they are not yet ready for implementation in a clinical setting Treatment options Treatments for cGVHD depend on how early it is caught how bad it is and what organs it affects Finding symptoms early is vital Certain problems such as dry eyes may be permanent so the sooner it is noticed and treated the better Other problems such as skin rashes can go away completely Treatment is based on which organ is involved If cGVHD is severe or if more than one organ system has cGVHD systemic immunosuppressive treatment may be used Systemic treatment affects the whole body The FDA Food and Drug Administration has not approved any specific drug for cGVHD Current treatment strategies are based on knowledge acquired from prior experience and research studies Clinical trials research studies for acute and chronic GVHD treatments are taking place all over the country You may want to think about joining a clinical trial especially if your cGVHD has come back or has become worse after treatment To learn more about clinical trials see Chapter 3 At the beginning I used to be very passive relying heavily on everything the doctors and nurses told me I then realized that I was the one person responsible for my well being and that sometimes I should listen to my instincts more because I knew what was best for me The medical team can provide a lot of good information but nobody reacts the same way to treatments nobody has the same side effects etc At the end of the day you re the one dealing with the symptoms Increased risk of infection Chronic GVHD often weakens your immune system and can increase your risk of getting an infection Treatment for cGVHD tends to hold back your immune system further raising the risk of infection It is very common to be on antibiotics antiviral and antifungal medicines to prevent infections while you are being treated for cGVHD If vaccines are available for possible infections you should strongly think about getting them Most transplant centers will start vaccinations six to

    Original URL path: http://www.nbmtlink.org/resources_support/graft-versus-host-disease/graft-versus-host-disease-chapter-one.html (2015-03-27)
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  • News and Events - National Bone Marrow Transplant Link
    from Health Resources and Services Administration HRSA This national support and advocacy project will provide outreach and support to caregivers of pre and post BMT patients through a network of targeted nbmtLINK hospital partners and trained peer support volunteers This outreach effort will provide much needed encouragement and hope through peer support and practical advice as well as a sterling silver Help and Hope nbmtLINK bracelet designed by David Wachler

    Original URL path: http://www.nbmtlink.org/news_events/bracelet.htm (2015-03-27)
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  • Introduction - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    AOCN National Institutes of Health Nivia Montes DHSc MHEP MPAS PA C MD Anderson Cancer Center Stem Cell Transplantation and Cellular Therapy Steven Pavletic MD National Institutes of Health Keren Stronach MPA BMT Survivor nbmtLINK Staff Cindy Goldman MEd Myra Jacobs MA Tiffany Rowe MBA nbmtLINK Volunteers Mel Jacobs Chris McClellan Peg McIvor Lori Strager We gratefully acknowledge the financial support for the production of this bi lingual publication Bone Marrow Stem Cell Transplant Frequently Asked Questions Helpful information for patients caregivers and families from the following sponsors LINK Partner Sponsors Barbara Ann Karmanos Cancer Institute City of Hope Dana Farber Brigham and Women s Cancer Center Duke Adult Blood and Marrow Transplant Program Fred Hutchinson Transplant Program at Seattle Cancer Care Alliance Froedtert Hospital and the Medical College of Wisconsin Henry Ford Transplant Institute Loyola University Medical Center Memorial Sloan Kettering Cancer Center The Blood and Marrow Program at Northside Hospital Oregon Health Science University Roswell Park Cancer Institute Blood Marrow Transplant Program Department of Medical Oncology Thomas Jefferson University Hospitals Kimmel Cancer Center University Hospitals Seidman Cancer Center University of Michigan Comprehensive Cancer Center The University of Nebraska Medical Center and The Nebraska Medical Center Vanderbilt Ingram Cancer Center Vanderbilt University Medical Center American Society for Blood and Marrow Transplantation The Leukemia Lymphoma Society Meredith A Cowden Foundation General Motors Foundation Amgen Otsuka America Pharmaceutical Inc Supporting Book Sponsors Be The Match Center for International Blood and Marrow Transplant Research CIBMTR Emory University Hospital Winship Cancer Institute Back to Frequently Asked Questions Main page Acknowledgements Introduction 1 What diseases are typically treated with bone marrow stem cell transplant 2 How can I decide if a transplant is right for me or my child 3 What is a bone marrow stem cell transplant 4 How are the stem cells

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_acknowledgements.html (2015-03-27)
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