The Official Parent's Sourcebook on Childhood Acute Lymphoblastic Leukemia

308 Pages·2002·0.94 MB·English

by  James N.

THE OFFICIAL
PARENT’S SOURCEBOOK
on

C
HILDHOOD
A
CUTE
L
YMPHOBLASTIC
L
EUKEMIA

JAMES N. PARKER, M.D.
AND PHILIP M. PARKER, PH.D., EDITORS
ii
ICON Health Publications
ICON Group International, Inc.
4370 La Jolla Village Drive, 4th Floor
San Diego, CA 92122 USA

Copyright (cid:1)2002 by ICON Group International, Inc.

Copyright (cid:1)2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it
may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical,
photocopying, recording or otherwise, without written permission from the publisher.

Printed in the United States of America.

Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1

Publisher, Health Care: Tiffany LaRochelle
Editor(s): James Parker, M.D., Philip Parker, Ph.D.

Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for
consultation with your child’s physician. All matters regarding your child’s health require medical supervision. As new
medical or scientific information becomes available from academic and clinical research, recommended treatments and drug
therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up
to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not
responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or
implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in
accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation,
in close consultation with a qualified physician. The reader is advised to always check product information (package inserts)
for changes and new information regarding dose and contraindications before administering any drug or pharmacological
product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and
supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments.

Cataloging-in-Publication Data

Parker, James N., 1961-
Parker, Philip M., 1960-

The Official Parent’s Sourcebook on Childhood Acute Lymphoblastic Leukemia: A Revised and Updated Directory
for the Internet Age/James N. Parker and Philip M. Parker, editors
p. cm.
Includes bibliographical references, glossary and index.
ISBN: 0-597-83345-1
1. Childhood Acute Lymphoblastic Leukemia-Popular works. I. Title.
iii

Disclaimer

This publication is not intended to be used for the diagnosis or treatment of a health
problem or as a substitute for consultation with licensed medical professionals. It is sold
with the understanding that the publisher, editors, and authors are not engaging in the
rendering of medical, psychological, financial, legal, or other professional services.

References to any entity, product, service, or source of information that may be contained in
this publication should not be considered an endorsement, either direct or implied, by the
publisher, editors, or authors. ICON Group International, Inc., the editors, or the authors are
not responsible for the content of any Web pages nor publications referenced in this
publication.

Copyright Notice

If a physician wishes to copy limited passages from this sourcebook for parent use, this right
is automatically granted without written permission from ICON Group International, Inc.
(ICON Group). However, all of ICON Group publications are copyrighted. With exception
to the above, copying our publications in whole or in part, for whatever reason, is a
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iv

Dedication

To the healthcare professionals dedicating their time and efforts to the study of childhood
acute lymphoblastic leukemia.

Acknowledgements

The collective knowledge generated from academic and applied research summarized in
various references has been critical in the creation of this sourcebook which is best viewed
as a comprehensive compilation and collection of information prepared by various official
agencies which directly or indirectly are dedicated to childhood acute lymphoblastic
leukemia. All of the Official Parent’s Sourcebooks draw from various agencies and institutions
associated with the United States Department of Health and Human Services, and in
particular, the Office of the Secretary of Health and Human Services (OS), the
Administration for Children and Families (ACF), the Administration on Aging (AOA), the
Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and
Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food
and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the
Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the
institutions of the National Institutes of Health (NIH), the Program Support Center (PSC),
and the Substance Abuse and Mental Health Services Administration (SAMHSA). In
addition to these sources, information gathered from the National Library of Medicine, the
United States Patent Office, the European Union, and their related organizations has been
invaluable in the creation of this sourcebook. Some of the work represented was financially
supported by the Research and Development Committee at INSEAD. This support is
gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her
excellent editorial support.
v

About the Editors

James N. Parker, M.D.

Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the
University of California, Riverside and his M.D. from the University of California, San
Diego. In addition to authoring numerous research publications, he has lectured at various
academic institutions. Dr. Parker is the medical editor for the Official Parent’s Sourcebook
series published by ICON Health Publications.

Philip M. Parker, Ph.D.

Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at
INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the
University of California, San Diego and has taught courses at Harvard University, the Hong
Kong University of Science and Technology, the Massachusetts Institute of Technology,
Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Parent’s
Sourcebook series published by ICON Health Publications.
vi

About ICON Health Publications

In addition to childhood acute lymphoblastic leukemia, Official Parent’s Sourcebooks are
available for the following related topics:

(cid:1)(cid:2) The Official Patient's Sourcebook on Childhood Acute Myeloid Leukemia - Other
Myeloid Malignancies
(cid:1)(cid:2) The Official Patient's Sourcebook on Childhood Hodgkin's Disease
(cid:1)(cid:2) The Official Patient's Sourcebook on Childhood Liver Cancer
(cid:1)(cid:2) The Official Patient's Sourcebook on Childhood Non-hodgkin's Lymphoma
(cid:1)(cid:2) The Official Patient's Sourcebook on Childhood Rhabdomyosarcoma
(cid:1)(cid:2) The Official Patient's Sourcebook on Childhood Soft Tissue Sarcoma
(cid:1)(cid:2) The Official Patient's Sourcebook on Neuroblastoma
(cid:1)(cid:2) The Official Patient's Sourcebook on Retinoblastoma
(cid:1)(cid:2) The Official Patient's Sourcebook on Unusual Childhood Cancers
(cid:1)(cid:2) The Official Patient's Sourcebook on Wilm's Tumor and Other Childhood Kidney
Tumors

To discover more about ICON Health Publications, simply check with your preferred online
booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of
our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts:

ICON Group International, Inc.
4370 La Jolla Village Drive, Fourth Floor
San Diego, CA 92122 USA
Fax: [phone]
Web site: www.icongrouponline.com/health
Contents vii
Table of Contents

INTRODUCTION......................................................................................1
Overview...............................................................................................................1
Organization.........................................................................................................3
Scope.....................................................................................................................3
Moving Forward...................................................................................................4
PART I: THE ESSENTIALS.................................................7
CHAPTER 1. THE ESSENTIALS ON CHILDHOOD ACUTE
LYMPHOBLASTIC LEUKEMIA: GUIDELINES...........................................9
Overview...............................................................................................................9
What Is Childhood Acute Lymphoblastic Leukemia?.........................................11
Stage Information...............................................................................................13
Treatment Option Overview..............................................................................13
Treatment by Stage.............................................................................................15
To Learn More....................................................................................................16
About PDQ.........................................................................................................17
More Guideline Sources.....................................................................................19
Vocabulary Builder.............................................................................................25
CHAPTER 2. SEEKING GUIDANCE.......................................................29
Overview.............................................................................................................29
Cancer Support Groups......................................................................................31
The Cancer Information Service.........................................................................33
Finding Cancer Resources in Your Community................................................35
Finding Doctors Who Specialize in Cancer Care...............................................39
Selecting Your Child’s Doctor............................................................................41
Working with Your Child’s Doctor....................................................................42
Getting a Second Opinion..................................................................................43
Finding a Cancer Treatment Facility.................................................................44
Questions and Answers about Children’s Cancer Centers................................45
Additional Cancer Support Information............................................................48
Vocabulary Builder.............................................................................................48
CHAPTER 3. CLINICAL TRIALS AND CHILDHOOD ACUTE
LYMPHOBLASTIC LEUKEMIA...............................................................51
Overview.............................................................................................................51
Recent Trials on Childhood Acute Lymphoblastic Leukemia.............................54
Benefits and Risks...............................................................................................73
Clinical Trials and Insurance Coverage.............................................................75
Increasing the Likelihood of Insurance Coverage for Trials...............................78
If Your Insurance Claim Is Denied after the Trial Has Begun..........................80
Government Initiatives to Expand Insurance Coverage for Trials....................83
Keeping Current on Clinical Trials....................................................................84
viii Contents
General References..............................................................................................85
Vocabulary Builder.............................................................................................86
PART II: ADDITIONAL RESOURCES AND
ADVANCED MATERIAL..................................................89
CHAPTER 4. STUDIES ON CHILDHOOD ACUTE LYMPHOBLASTIC
LEUKEMIA............................................................................................91
Overview.............................................................................................................91
The Combined Health Information Database.....................................................91
Federally-Funded Research on Childhood Acute Lymphoblastic Leukemia.......93
E-Journals: PubMed Central............................................................................103
The National Library of Medicine: PubMed....................................................105
Vocabulary Builder...........................................................................................125
CHAPTER 5. BOOKS ON CHILDHOOD ACUTE LYMPHOBLASTIC
LEUKEMIA..........................................................................................131
Overview...........................................................................................................131
The National Library of Medicine Book Index.................................................131
Chapters on Childhood Acute Lymphoblastic Leukemia..................................134
General Home References.................................................................................135
Vocabulary Builder...........................................................................................137
CHAPTER 6. MULTIMEDIA ON CHILDHOOD ACUTE LYMPHOBLASTIC
LEUKEMIA..........................................................................................139
Overview...........................................................................................................139
Bibliography: Multimedia on Childhood Acute Lymphoblastic Leukemia.......140
Vocabulary Builder...........................................................................................142
CHAPTER 7. PHYSICIAN GUIDELINES AND DATABASES...................143
Overview...........................................................................................................143
NIH Guidelines.................................................................................................143
What Is Childhood Acute Lymphoblastic Leukemia?.......................................144
Risk Factors......................................................................................................145
Prognosis..........................................................................................................146
Cellular Classification......................................................................................148
Clinical and Laboratory Features at Diagnosis................................................149
Molecular and Biological Characteristics of Leukemia Cells at Diagnosis......152
Chromosome Number.......................................................................................155
Recurring Chromosomal Translocations..........................................................156
Treatment Option Overview............................................................................162
Treatment Options for Untreated Childhood ALL...........................................165
Treatment Options for Childhood ALL in Remission......................................172
Role of Bone Marrow Transplant for Philadelphia Chromosome-Positive ALL
..........................................................................................................................178
Treatment Options Under Clinical Evaluation...............................................178
Recurrent Childhood Acute Lymphoblastic Leukemia.....................................180
Contents ix
NIH Databases..................................................................................................184
Other Commercial Databases...........................................................................188
The Genome Project and Childhood Acute Lymphoblastic Leukemia..............189
Specialized References.......................................................................................193
Vocabulary Builder...........................................................................................195
CHAPTER 8. DISSERTATIONS ON CHILDHOOD ACUTE
LYMPHOBLASTIC LEUKEMIA.............................................................199
Overview...........................................................................................................199
Dissertations on Childhood Acute Lymphoblastic Leukemia...........................199
Keeping Current...............................................................................................200
PART III. APPENDICES ..................................................201
APPENDIX A. RESEARCHING YOUR CHILD’S MEDICATIONS...........203
Overview...........................................................................................................203
Your Child’s Medications: The Basics..............................................................204
Learning More about Your Child’s Medications.............................................205
Commercial Databases......................................................................................207
Drug Development and Approval....................................................................208
Understanding the Approval Process for New Cancer Drugs.........................209
The Role of the Federal Drug Administration (FDA)......................................210
Getting Drugs to Patients Who Need Them....................................................213
Contraindications and Interactions (Hidden Dangers)...................................215
A Final Warning..............................................................................................216
General References............................................................................................217
Vocabulary Builder...........................................................................................218
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE...................219
Overview...........................................................................................................219
What Is CAM?.................................................................................................220
What Are the Domains of Alternative Medicine?............................................221
Finding CAM References on Childhood Acute Lymphoblastic Leukemia.......226
Additional Web Resources................................................................................237
General References............................................................................................238
APPENDIX C. FINDING MEDICAL LIBRARIES....................................241
Overview...........................................................................................................241
Preparation.......................................................................................................241
Finding a Local Medical Library......................................................................242
Medical Libraries Open to the Public...............................................................242
APPENDIX D. YOUR CHILD’S RIGHTS AND INSURANCE..................249
Overview...........................................................................................................249
Your Child’s Rights as a Patient......................................................................249
Parent Responsibilities.....................................................................................253
Choosing an Insurance Plan.............................................................................254
Medicaid...........................................................................................................256
x Contents
Financial Assistance for Cancer Care...............................................................257
NORD’s Medication Assistance Programs.....................................................259
Additional Resources........................................................................................260
Vocabulary Builder...........................................................................................260
APPENDIX E. TALKING WITH YOUR CHILD ABOUT CANCER...........263
Overview...........................................................................................................263
Why Should I Tell My Child?..........................................................................264
Parent’s Questions...........................................................................................264
What Should My Child Be Told?.....................................................................265
Questions Children May Ask...........................................................................267
Talking to Your Child with Late-Stage Cancer................................................268
Vocabulary Builder...........................................................................................269
ONLINE GLOSSARIES....................................................271
Online Dictionary Directories..........................................................................277
CHILDHOOD ACUTE LYMPHOBLASTIC LEUKEMIA
GLOSSARY .........................................................................279
General Dictionaries and Glossaries................................................................292
INDEX...................................................................................294