Adult Leukemia: A Comprehensive Guide for Patients and Families

Adult Leukemia: A Comprehensive Guide for Patients and Families

by Barb Lackritz

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Overview

Adult Leukemia: A Comprehensive Guide for Patients and Families by Barb Lackritz

Tens of thousands of Americans are living with adult leukemia, a cancer of the white blood cells. Adult leukemia, which is really a group of diseases, can be a baffling condition for patients and families to understand, and finding targeted information on individual conditions can be difficult.In straightforward, non-technical language, Adult Leukemia: A Comprehensive Guide for Patients and Families gives those living with leukemia the skills and resources to meet their needs for information and support. It addresses:

  • Diagnosis and medical tests
  • Finding, and successfully interacting with, a good oncologist
  • Characteristics of the leukemias, factors in prognosis, and the various subtypes and staging systems for the disease
  • Treatments, including watch-and-wait, chemotherapy, marrow transplantation, stem cell rescue, radiation, biological treatments, and trends in research
  • Side effects and long-term effects of treatment, including how to cope and increase your quality of life
  • Emotional responses to diagnosis, treatment, remission, possible recurrence, and other aspects of dealing with the condition, including stories from dozens of families living with leukemia
  • Getting support from your family, friends, employers, and the broader community
  • Leukemia resources: a comprehensive list that includes organizations, print, and online sites
Author Barb "Grannybarb" Lackritz is a leading patient activist in the leukemia community and herself a long-term leukemia survivor. She hosts several online mailing lists, maintains a well-known leukemia web site, and speaks frequently to doctors and government organizations. Lackritz emphasizes the promising emerging treatments for leukemia, covering in considerable depth the clinical trials of new therapies grounded in Western medicine. The information on researching leukemia, glossary, and appendixes will provide welcome support for those who want to keep up with the latest research.

Product Details

ISBN-13: 9780596500016
Publisher: Patient Centered Guides
Publication date: 04/28/2001
Series: Patient Centered Guides Series
Edition description: 1ST
Pages: 536
Product dimensions: 6.00(w) x 9.00(h) x 1.08(d)

About the Author

Barbara B. Lackritz is a retired educator, speech/language pathologist, and four-term alderwoman and member of the Planning and Zoning Commission for the City of Town and Country, Missouri.

Barb received her undergraduate degree from the University of Michigan in 1959 and her master's degree from Columbia University Teacher's College in 1962. She has accumulated about 50 post-master's degree credits.

A leukemia survivor and cancer patient advocate, Barb manages 30 cancer support lists for the Association of Cancer Online Resources (ACOR) and, with AML survivor Arthur Flatau, PhD, is webmaster of the award-winning "GrannyBarb and Art's Leukemia Links." Barb's own leukemia story is on the Web and is used by doctors at the National Cancer Institute for training new doctors. She deals daily with requests for information and support from patients who have found her web site or joined her hematological cancer lists.

In addition, Barb is currently president of the American Association of University Women--Missouri (AAUW-MO) and member of the National Institutes of Health Director's Council of Public Representatives. She sits on the Board of Directors of ACOR and of the Chronic Lymphocytic Leukemia (CLL) Foundation.

Table of Contents

Foreword
Preface

1: What Leukemia Is
Understanding blood
How leukemia begins
How leukemia is diagnosed
Kinds of adult leukemia
Acute leukemias
Chronic leukemias
Other chronic lymphocytic leukemias
Preleukemic conditions
What leukemia is not

2: Signs and Symptoms
Bringing concerns to your doctor
Acute leukemias
Chronic leukemias
Hairy cell leukemia (HCL)

3: Diagnosis
Diagnosis by blood work
Who to see for testing
Questions for a first visit
Comprehensive blood testing
Hearing the diagnosis
Emotional responses to diagnosis

4: Tests and Procedures
General information
Specific tests

5: Subtype, Staging, and Prognosis
Blood tests yield subtype and staging information
Acute leukemias
Chronic leukemias
Hairy cell leukemia

6: Risks and Causes
Who is at risk for leukemia
Causal information
Viral links to leukemia
Speculative causes of leukemia
Prevention and reducing risk

7: Treatment Options
The range of treatment theories
Standard therapies
Chemotherapy
Rescue drugs
Biological therapies
Choosing the best treatment option
What to expect during treatment
Treatment protocols
Preparation
Scheduling
Administering therapies

8: Treatments for Individual Leukemias
Treatment protocols
Acute leukemias
Chronic leukemias
Adult T-cell leukemia (ATL)
Prolymphocytic leukemia (PLL)
Hairy cell leukemia (HCL)
Splenic lymphoma with villous lymphocytes (SLVL)

9: Transplantation
Bone marrow transplant basics
Types of bone marrow transplants
Considerations for patients and families
How transplants are done
After treatment
Long-term effects
Becoming a donor

10: Clinical Trials and Beyond
Who should learn about clinical trials?
What are clinical trials?
Why participate in clinical trials?
Guinea pig?
Placebos
How clinical trials are run
Where to go for clinical trials
Finding trials for leukemia
Why research trials on your own?
Getting admitted to a trial
Once you are accepted
Payment
Future treatment directions
Research in biological anticancer substances
Research in chemotherapy

11: Communicating with Your Medical Team
Establishing a relationship with your doctor
Talking with your doctor
Medical case managers
Second opinions
Communicating with the hospital staff

12: Side Effects of Treatment
General observations
Why do side effects arise?
A word about prednisone
Side effects of treatment

13: Stress and the Immune System
What is stress?
Responses to stress
The effect of stress on the immune system
What can we do?
Stress reduction techniques
Stress medications

14: Getting Support
Specific needs
Communicate these details
Typical reactions
How to communicate about needs
Sources of support
Loved ones
Good friends
Support groups
Coworkers
Individual and family counseling
Organizations that focus on help
Challenging moments

15: Insurance and Finances
Health insurance
Financial issues
Disability income
Employment issues
Record-keeping
Traveling for care

16: After Treatment
Leaving the world of treatment
Moving on
Emotional responses
Social and professional after-effects
Lingering symptoms and side effects
Late effects and complications

17: Recurrence
Recurrence defined
Causes for recurrence
What to look for
When am I safe from fears of relapse?
Treatment options
Transformations
Emotional responses
Mobilizing for treatment again
Adjusting to treatment again
What family and friends can do
What the patient can do

18: If All Treatments Have Failed
Setting new goals
Emotional concerns
Physical aspects of dying
Can we make dying easier?
Planning your own memorial ceremony

19: Researching Your Leukemia
Why researching helps
What you'll need to begin
Ways to find information
Getting started
Research papers from medical journals
How to obtain medical textbooks
Finding clinical trials
How to find support groups
How to verify drug information
Verifying your chemotherapy dose
How to interpret test results
How to assess unproven remedies
Other unique web resources
What next?

A: Resources
B: Normal Blood and Marrow Test Values
C: Body Surface Area in Square Meters
D: FAB Staging of Acute Leukemia
E: Genetic Classification of the Lymphocytic Leukemias
F: Progression of Cell Development
G: Leukemia Drugs
Notes
Glossary
Index

Preface

Preface

If you are reading this book it is likely that you or someone close to you has been diagnosed with leukemia. A cancer diagnosis is shocking and fearsome. It changes your life in many ways and affects every member of your family. It brings you face to face with your own mortality. Your friends will be concerned and many won't know how to deal with you. You will be afraid of pain and possible dependence on others, and you will fear dying. Nevertheless, do not despair!

This book offers facts about the disease and contains stories from people who have been through what you face. It offers hope and helps you to deal with and to understand things you are likely to experience. It even suggests ways to make yourself a very well informed patient so that you regain some control over your life.

Why I wrote this book

Everyone in life has to face a dragon or two. I met my dragon in 1988 shortly after my 50th birthday. I awakened that morning thinking that I liked my life. My children were delightful, good friends. My husband was doing well and had his health. I loved my profession and thoroughly enjoyed going to work each day. Life was good.

I've been taught from childhood never to tempt fate. Perhaps I should have known better than to have counted blessings that morning. After work, I stopped off at the doctor's office to have my cholesterol checked. I left the blood sample, and drove home singing despite the traffic. The next morning the call came, "Barb, the blood work looks strange. Come in and we'll do it again." I came in, blithe and unaware. That time the doctor did the pathology himself. He told me:

Your white blood count is high. There are some strange smudge cells in the blood sample. I hate to say it, but I want you to see a hematologist because I think you have chronic lymphocytic leukemia. Oh yes, one thing more. Your cholesterol is within normal limits.

So began my first encounter with this dragon. My cholesterol was fine. That was why I had the blood test done. The dragon swooped down like a lightning bolt. There was no warning, no symptoms, nothing to give me any idea that I was fighting for my life.

It was a quiet, patient dragon. It didn't give me any trouble for almost four years (after we were introduced), but then it roared into battle. My counts had been climbing slowly during those years, but they were nothing to worry about. Suddenly I was fatigued and had a hard time getting out of bed. Bruises on my arms stayed black and blue for weeks. Sinus infections moved in to stay.

The time had come to meet the dragon in battle. Six months of fludarabine monophosphate chemotherapy administered intravenously gave me a temporary victory. More battles followed with shorter spaces between, until I was in a last ditch battle for my life. An autologous bone marrow transplant using my own purged cells gave me the latest victory and I've been cancer free since June 1997. The dragon is sleeping, and I hope it has finally conceded victory to me. If not, I shall battle again.

The battles were not easy. I had great help all along the way. Family, friends, and health professionals provided strong support, good choices, and the best of medical care. My colleagues fought with me right to the last dragon roar and since then we have celebrated life, each day, every day. May my dragon never wake!

When I was diagnosed with chronic lymphocytic leukemia I had no idea that it was a hematological malignancy. I knew nothing about the disease. My mother's sister had died in the 1920s of Hodgkin's disease, but all I knew was that it was a blood disease. I had lots to learn, but there were few resources.

I started at the public library looking for books on leukemia. There was almost nothing there. I called the Leukemia Society of America and (800) 4 CANCER, but they had little to offer an information-starved patient. I tried the Internet, but in those days there was little information online and finding it was not an easy task. As I gained knowledge, I promised myself that I would never let anyone else go through the frustration I encountered alone as I tried to research my disease.

In an attempt to make the information more accessible to the public, I wrote GrannyBarb's chronic lymphocytic leukemia (CLL) story (http://www.acor.org/leukemia/storydir/barb.html) and put it up on the World Wide Web. It is used now as a teaching tool for young doctors studying at the National Institutes of Health. I also created a web site called "GrannyBarb's Leukemia Links," which subsequently was joined with another leukemia links site run by Arthur Flatau, PhD, an acute myelogenous leukemia survivor, to become GrannyBarb and Art's Leukemia Links (http://www.acor.org/leukemia).

I joined Internet support lists to help myself, and ended up helping to found the Hem-Onc List, supporting those with hematological malignancies. Hem-Onc is the grandmother of the hematological cancer lists. Presently I work with support lists for every kind of leukemia, and with many non-leukemia lists as well. I sit on the board of directors of ACOR, the Association of Cancer Online Resources, and the CLL Foundation to increase visibility and to educate people about leukemia. The CLL Foundation raises funds for research into CLL. I speak at forums throughout the country and, with top CLL specialists in the USA, have participated in online web casts that are promoted by the Leukemia and Lymphoma Society (available at http://www.healthtalk.com). Now I'm writing this book to try to bring information to people who are dealing with this disease but who may not yet be online.

I strongly believe that an informed patient is the best kind of patient. We make today's healthcare institutions give us the quality of care we need. We know what questions to ask and what treatment options we have. I sincerely hope this book will provide you with as much information about leukemia as you feel you want to learn.

My quest is to enable others to walk the paths I've walked with less fear and trepidation . Yes, it is a quest! Those of us who battle the leukemia dragon know we must ensure that the dragon does not defeat anyone due to a lack of information, support, education, or medical choices.

Organization of the book

The book is organized to take you along the path of a patient's experiences from symptoms, to understanding the nature of the disease, to testing and diagnosis. You'll learn what leukemia is and what it isn't. We survivors will share the questions we wish we had known to ask our doctors. We'll discuss tests and procedures so that you will know what to expect before you have to deal with them, or so that you understand what you have experienced and why.

We'll look at risks and possible causes for and predispositions to leukemia. There will be a lot of discussion about staging and standard treatments for each leukemia. We'll not only talk about what possible treatments might be, but about how the treatments are given. The information is complex and I've tried to make it understandable. If you are only interested in one type of leukemia, feel free to read only the sections that deal with it.

Many leukemias are treated with bone marrow or stem cell transplants, so that is a topic we'll cover in depth. With new treatments arriving frequently, we'll also discuss clinical trials and what they can and can't do for you. Clinical trials move rapidly and something really exciting may happen between the writing and publishing of this material. While we've tried to be as current as possible, new ideas and research results will invariably change the landscape of leukemia therapy as it exists today.

With all the treatment options available, choices become most confusing for patients. Families and caregivers are often called upon for help, so we'll cover ways to make the best treatment decision. Working with your doctor and his team is a key issue, so we've devoted a chapter to ways to make this important relationship effective.

Treatment helps, but sometimes there are side effects. Topics of discussion include what to expect and how to deal with unexpected side effects. We'll talk about stress and what it does to the immune system, and we'll discuss ways of getting support when you need it. Treatment takes over our world at times, but how do we deal with life when treatment is over and we're back in real-time again? Chapter 16, After Treatment deals with ways to face that problem.

Sooner or later that hard-won remission may deteriorate and we may face a recurrence of leukemia. We'll consider ways to deal with that situation head on. At some point we may have used all the available options and all treatments may have failed. That's when we'll talk about end of life issues and how to deal with what comes next.

The final chapter of this book is dear to my heart, for it talks about how you can research your leukemia. We've put many references into the chapter and then given you addresses for web sites where you will find still more information.

Appendix A includes general resources for assistance. Appendix B provides blood and marrow test values so blood work reports make sense to you. Appendix C provides charts for calculating body surface area; Appendix D explains acute leukemia staging; Appendix E provides genetic explanations of the different leukemias; Appendix F explains the progression of cell development; and Appendix G provides charts of common chemotherapies used for leukemia treatments. . Yes, there is a Glossary of terms, because we need to become conversant with the language we're exposed to during leukemia battles. The book ends with a blood and marrow donor card for those who care about others who have leukemia and wish to give a gift of life.

Who this book is written for

If you've recently been diagnosed with leukemia, you're likely feeling panic and pain. Your whole world has fallen apart and you've been left in the rubble. No matter who is there to help you, the ultimate decisions are yours. How do you pick up the pieces and weave them back into your life again? How do you help your family and friends accept and understand the situation? How do you step back from the worry and accept the help that others are offering?

The information in this book was assembled with you in mind. It has been gathered over a long period and includes the experiences of hundreds of cancer patients, their children and families, and their caregivers. We hope that when you're finished reading this, you feel that you have met friends who have been there and done that and are sharing their experiences so that you know what to expect down the line.

For those of you who have been dealing with this dragon for a while now, you know what a canny old beast it is. You've had first-hand some of the experiences we relate. We hope you'll be reading and shaking your head thinking, "Oh yes! That was quite an experience, and mine was similar." There is as much new information in this text as could be found to share. Leukemia research is moving very rapidly and new information is coming weekly from the human genome project, which is impacting every facet of cancer research. The treatment options of the future may make current practices look barbaric. We may even achieve that wonderful dream--a cure for leukemia!

You may be a spouse, a child, a family member, a good friend, or a medical professional. In all those cases the information in this book should be of help to you in understanding what the patient is undergoing and how those experiences are being perceived. We hope that you will find suggestions that will enable you to help your patient deal with this illness. We also hope that whatever your relationship, you will find information here that will ease the load of worry you carry as you watch the battle with the dragon, knowing that all you can do is wait for the outcome. Many patients say that they think the watching and waiting is harder for the caregiver and family members. Patients are being treated. Something is being done for them. All the others can do is watch and worry.

What this book provides

This book is written by a patient, not a doctor. It provides information that is based upon patient experiences and perceptions. Scientific terminology has been kept to a minimum, but common terms that the patient needs to understand are explained. Patients communicate with medical professionals who use special jargon. Some of their language simply needs to be translated; other bits and pieces need to be restated in ways the patient can understand.

We, as patients, need to know some basic medical information so that things that happen and continue to happen in our lives can be put into a frame of reference that makes sense to us. We have to know the basic tests and information from the results of tests so that we can put them into a logical context. Treatment options need to be explained in ways that show us how we benefit. We will try to provide that frame of reference in these chapters.

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