APRIL 2002
VOLUME 4 N UMBER 10
A PUBLICATION OF THE INTERNATIONAL MYELOMA FOUNDATION
THE IMPORTANCE OF KNOWING
THE POTENTIAL OUTCOME:
H
Role for the new
IGHLIGHTS
International Prognostic Index (IPI)
By Brian G.M. Durie, M.D.
most important and the most difficult to
The Importance of Knowing the
achieve. This is the goal of Drs. San
Potential Outcome:
When myeloma is first suspected,
Miguel and Greipp and their colleagues
Role for the New International
knowledge of the projected survival is criti-
developing the new International
Prognostic Index (IPI)
cal to both patient and physician. Is the
Prognostic Index (IPI). This project is
Page 1
diagnosis MGUS or active myeloma? If it is
supported by a grant from the
myeloma, will planned treatment work well
International Myeloma Foundation
Calendar of Events
Page 2
and can there be long survival? These latter
(IMF). Data collection from over 20 cen-
questions were the ones asked in 1975 when
ters from around the world is now pro-
Ask the Experts:
the Durie-Salmon
ceeding to devel-
"...now in 2002, additional factors can
Genetic Testing to Determine
staging system was
op both a basic
be used to precisely predict outcome."
the Cause and Outcome of Myeloma
developed. Stages
prognostic system
Page 3
I, II, and III reflect increasing amounts of
using parameters (such as SM, s. albu-
myeloma plus the fractional likelihood of
min, and age) available to everyone, and a
Bench to Bedside: Is It a Myth?
drug resistant clones evolving as the myelo-
more complex system integrating kinetic
Page 4
ma cells increase in number. The subscripts
and genetic information which will allow
A and B indicate the presence or absence of
correlation with current molecular and
After Any Diagnosis
abnormal renal function. Kidney function is
biologic research.
Page 5
the single "host" or patient factor which
The goal is to have data analysis
Gala 2002 Honoree:
impairs bodily functioning and ability to do
completed by the end of 2002. The pre-
Daniel E. Smith
well or not with therapy.
sentation will be made at the International
Page 6
This system of classifying patients
Myeloma Workshop in Salamanca in
into stages has worked well for decades. But
2003. These new levels of precision will
Fashions 4 A Cure
now in 2002, additional factors can be used
guide physicians to select the most appro-
Page 6
to precisely predict outcome. During the
priate treatment for each individual
1980s, serum 2 microglobulin testing
patient as well as allow patients and their
OVAC Advocacy Day
emerged as a powerful prognostic factor.
families to know what to expect. The
Page 7
Increasing levels indicate a larger and more
results of this project will interface well
aggressive myeloma tumor burden. Several
with another IMF-supported project: the
Did You Know?
other factors, some simple, such as age and
Myeloma Guidelines Consensus report.
Page 8
serum albumin level, provide additional pre-
These guidelines are being developed by a
A Patient's Perspective:
dictive power. More complex tests such as
panel of IMF Scientific Advisors, who will
A Diet to Contol Pain
the labelling index (a measure of growth
meet for the second St. John's Retreat in
Page 8
fraction), evaluation of the way myeloma
May 2002. Specifics of treatment and
cells look under the microscope (classified
testing guidelines are being summarized to
Atlanta IMF
into immature/plasmablastic or not), and
relate both to the diagnostic and prognos-
Patient & Family Seminar Report
detailed chromosome analysis directly or by
tic categories as well as to new planned
Page 9
fluorescent techniques (FISH) can add fur-
clinical trials. Novel therapies must be
ther precision. The newest observation of
integrated into current management in an
Twelve Simple Truths to Soothe Stress
chromosome 13 deletion or abnormality
organized way to maximize the advantages
Page 11
associated with poorer outcome is the most
of the combination therapy approach.
News & Notes
predictive.
Each step forward improves both quality
Page 12
So how can all this information be
and length of survival for myeloma
brought together and have international
patients. s
medical consensus? The latter point is the

---

2002 CALENDAR OF EVENTS
The IMF is dedicated to improving the
quality of life of myeloma patients while
working toward prevention and a cure.
April 14, 2002
Second Annual Myeloma March
Niantic, Connecticut
IMF Headquarters:
April 18-21, 2002
ONS Annual Meeting
Washington, D.C.
12650 Riverside Drive, Suite 206
(Oncology Nursing Society)
North Hollywood, CA 91607-3421 USA
Tel: (800) 452-2873 or (818) 487-7455
April 24, 2002
Cancer Care Teleconference:
*see below
Fax: (818) 487-7454
Understanding Anemia & Fatigue, Part IV
E-mail: TheIMF@myeloma.org
Website: www.myeloma.org
April 27-28, 2002
IMF Patient & Family Seminar
Vienna, AUSTRIA
Susie Novis
April 30 - May 1, 2002 Advocacy Days
Washington, D.C.
President
E-mail: SNovis@myeloma.org
May 11-15, 2002
IMF Scientific Advisory Board Retreat
St. John, USVI
Suzanne Battaglia
May 18, 2002
3rd Annual JC Invitational Golf Tournament
Clearwater, MN
Meeting & Event Services
May 18-21, 2002
ASCO Annual Meeting
Orlando, Florida
E-mail: SBattaglia@myeloma.org
(American Society of Clinical Oncology)
Nancy Baxter
Hotline Coordinator
June 3-4, 2002
OVAC Advocacy Days
Washington, D.C.
E-mail: NBaxter@myeloma.org
(One Voice Against Cancer)
Debbie Birns
June 7-8, 2002
IMF Patient & Family Seminar
Washington, D.C.
Hotline Coordinator
E-mail: DBirns@myeloma.org
June 24, 2002
IMF Golf Challenge 2002
Stamford, CT
Stephanie Colman
August 2-3, 2002
IMF Patient & Family Seminar
Chicago, Illinois
Community Relations and Public Affairs
August 10, 2002
Challenging Cases
New York, New York
E-mail: SColman@myeloma.org
August 26-
Myeloma Awareness Week
Nationwide
Spencer Howard
Meeting & Event Services
September 1, 2002
E-mail: SHoward@myeloma.org
September 13, 2002
IMF Patient & Family Seminar
Sydney, AUSTRALIA
Pam Jones
October 5, 2002
IMF Ribbon of Hope Annual Gala
Washington, D.C.
Development Officer
E-mail: PJones@myeloma.org
October 10, 2002
IMF Support Group Leaders Retreat
Durham, NC
Marya Kazakova
November 8-9, 2002
IMF Patient & Family Seminar
Seattle, WA
Publications Editor
E-mail: MKazakova@myeloma.org
December 6-10, 2002
ASH Annual Meeting
Philadelphia, PA
(American Society of Hematology)
Kemo Lee
Subscription and Merchandise Services
E-mail: KLee@myeloma.org
For more information about IMF events, please check the IMF website at
www.myeloma.org or contact the International Myeloma Foundation at (800) 452-CURE.
Lisa Paik
Information Officer
E-mail: LPaik@myeloma.org
*To register for a Cancer Care teleconference, please call (800) 813-4673
at least 2 weeks in advance or check the CancerCare website at www.cancercare.org.
IMF (UK)
9 Gayfield Square
Edinburgh EH1 3NT Scotland
Tel: (44) 0131-557-3332
The registrations for the IMF Washington, D.C.
Fax: (44) 0131-556-9720
E-mail: myeloma@myeloma.org.uk
Patient & Family Seminar are pouring in.
Executive Director IMF (UK): Eric Low
Only 250 IMFers will be able to attend this exciting event.
Staff: Susan Hamilton, Andy Binns
DON'T DELAY ­ REGISTER TODAY!
The information presented
in Myeloma Today is not intended to
take the place of medical care or
Update: Friday Welcome Dinner will feature
the advice of a physician. Your doctor
should always be consulted
Keynote Speaker Dr. Andrew von Eschenbach,
regarding diagnosis and treatment.
Director of NCI.
2

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ASK THE EXPERTS:
Genetic Testing to Determine the Cause and Outcome Of Myeloma
severity, and what is more, it is now being
One of the important features of
suggested that, these changes can affect the
these genetic variants is that they can modi-
outcome of treatment. These changes can
fy the effects of toxic exposures, which can
now be easily detected using modern diag-
cause myeloma encountered in everyday life.
nostic tests, which means for the first time
This type of effect is referred to as a
their clinical significance can be fully
"gene/environment interaction". This con-
explored. Over the next years, it is expected
cept is well illustrated by considering the
that we will be able to detect a complete
consequences of exposing a group of individ-
genetic profile for an individual and so pre-
uals to a large amount of a toxin known to
dict their likelihood of developing a disease
cause myeloma. In this case the majority of
and their outcome after treatment.
exposed individuals would be expected to
Now that we can detect these
develop disease. However, in the normal
changes, we need to apply them in the clinical
environment, exposure levels are low and
environment with
"...it is expected that we will be able
only susceptible indi-
the aim of solving
viduals would be
to detect a complete genetic profile for
Gareth J. Morgan, PhD, FRCP, FRCPath
issues important for
expected to develop
Professor of Haematology and
an individual and so predict their
Director LRF Molecular Epidemiology Programme
myeloma patients.
disease. The suscepti-
University of Leeds, Leeds
One common ques-
likelihood of developing a disease and ble individuals could
W. Yorkshire, United Kingdom
tion that causes
their outcome after treatment."
be identified by their
By Gareth J. Morgan, PhD
major concern is whether they have an
genetic make up but would be at no
inherited disease, which means their children
increased risk in the absence of the toxic
A question of interest to both
are at increased risk of developing myeloma.
exposure.
patients and doctors alike is why, if a group
Certain rare families with an apparent
A number of distinct body systems
of people encounter a toxic exposure, only a
increased risk of myeloma have been identified,
have been identified which can affect the
limited number of them develop disease. "Is
but in the overwhelming majority of cases it
damage occurring as a consequence of envi-
it just bad luck?" is a frequently asked ques-
is not considered to be familial and does not
ronmental exposures. These include the
tion. While there is undoubtedly a contribu-
pose any increased risk for the children or
Glutathione S Transferase (GST) family of
tion of chance, it is not the whole story.
families of patient. So it can cause confusion
proteins, which protect against a number of
Doctors are just beginning to address this
if doctors say that inherited genetic variation
toxic environmental exposures, and the
question using the information coming from
can contribute to the risk of developing
cytochrome P450 (CYP450) family of pro-
our new understandings of human genome.
myeloma. It is, therefore, important to point
teins, which can act to increase the damag-
It is clear to everyone that people differ in
out the major differences between a familial
ing effects of a toxin before it is removed
size, eye and skin colour and nobody would
disease and a genetic predisposition. The
from the body. Underactivity at GST may
be surprised to be told that people with dark
most important differential features of these
therefore be a risk factor as may over-activity
skin are less suscepti-
two distinct states
at CYP450. DNA damage is one of the key
"A number of distinct body systems
ble to developing sun-
is the number and
features of myeloma. Another important
have been identified which can affect
burn if they lie on the
type of genes
area being studied is how variation in the
beach in the summer.
the damage occurring as a consequence involved. In a
capacity of the body to repair such damage
The same is true for
of environmental exposures."
familial disease it
can affect the risk of developing myeloma.
all the systems of the body where a range of
is usually a single gene, which causes very
Genetic variation in the cytokine control of
functional activity between people can be
obvious effects and inevitably gives rise to
the immune system could also affect the risk
identified. These variations are governed by
disease usually at a young age. For the genetic
of developing myeloma. IL6 is a key
minor genetic changes and can affect the
predisposition we describe here, it is not a
cytokine and a number of studies have
risk of developing a variety of different dis-
single abnormality that is important but the
looked at inherited variation within this
eases including cancer and myeloma. The
combined effects of variation within a number
gene. No associations have been found as
trouble has been that until now we have not
of different body systems together with a sig-
yet but there has been a suggestion that vari-
been able to recognise these differences.
nificant impact from life style and environ-
ation affecting the pro-inflammatory
What has changed recently is that
mental exposures.
"DNA damage is one of the key features of cytokine TNFa
we can now recognise some of the changes
Consequently, in
has been sug-
myeloma. Another important area being
in the genetic code, which makes up DNA
order to study this
gested to affect
studied is how variation in the capacity of
that governs these differences. The com-
question, scientists
the risk of devel-
monest of these changes are known as SNPs
need to combine
the body to repair such damage can affect oping myeloma.
(single nucleotide polymorphisms) and there
expertise in genet-
the risk of developing myeloma."
Using
could be as many as 60,000 of these which
ics with exposure assessment and epidemiol-
these new tests in this fashion is designed to
exert effects on disease. The changes alter
ogy rather than looking within families. The
help us understand what exposures cause
either the amount of a protein or its function
studies often have to be large, well designed,
myeloma and also to identify individuals
and, therefore, they can affect the chance of
and combine an assessment of exposure with
who are at increased risk. While this type of
developing myeloma, its time of onset or its
tests for genetic variation.
3
Please see page 10

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INTERNATIONAL MYELOMA FOUNDATION :
BENCH TO BEDSIDE: Is It a Myth?
Founder
Brian D. Novis
mice, which share many essential molecular
President
mechanisms with humans. The lowly fruit
Susie Novis
fly (Drosophila Melanogaster), whose genome
Board of Directors
has now been fully sequenced, has perhaps
Chairman Dr. Brian G.M. Durie
revealed the most about genes and disease.
Michael B. Bell
The application to myeloma has
Charles L. Briscoe
come from clinical investigators ­ frequently
Mark DiCicilia
Michael S. Katz
keen young investigators looking for new
Dr. Robert A. Kyle
ideas, who have introduced new diagnos-
Dr. Edith Mitchell
tics or therapies as part of clinical trials.
Dr. Gregory R. Mundy
The critical observations have been assess-
Charles Newman
ments of benefit in terms of better diagnosis,
Susie Novis
more frequent response to treatment, and/or
Richard H. Saletan
longer or better quality of survival.
John L. Salter
We do not yet have a cure for myelo-
E. Michael D. Scott
Brian G.M. Durie, M.D.
ma. But combination therapy can be curative
R. Michael Shaw
Cedars Sinai Comprehensive Cancer Center
Los Angeles, California
for several cancers, including testicular cancer
Donald B. Springer
(see Myeloma Today Volume 3, Number 6),
Donald R. Woodward
By Brian G.M. Durie, M.D.
childhood acute leukemia, and lymphomas.
Scientific Advisory Board
In evaluating the new innovations
Clinicians came up with the curative therapy
Chairman Robert A. Kyle, USA
that have contributed to better survival and
Raymond Alexanian, USA
through "investigator initiated" trials. It is
quality of life for myeloma patients, it is
Kenneth C. Anderson, USA
likely that the cure for myeloma will emerge
Giuseppe Avvisati, ITALY
helpful to ask: Where did these new inno-
from similar "bedside research" involving
Bart Barlogie, USA
vations come from? By way of illustration,
physicians not working in a laboratory.
Régis Bataille, FRANCE
several items have been selected and are
"Bench to Bedside" is therefore not
Meral Beksac, TURKEY
summarized in the accompanying Table.
exactly a myth , but the bench work usually
William Bensinger, USA
It is very clear that the origin of
substantially precedes the bedside research and
James R. Berenson, USA
myeloma management advances derives from
is typically in a different city or country from
Daniel Bergsagel, CANADA
pharmaceutical and related corporations.
the subsequent pivotal clinical observations.
Leif Bergsagel, USA
However, the impetus to these corporations
Identifying promising strategies
Joan Bladé, SPAIN
has frequently stemmed from academic
and expediting appropriate clinical trials
Mario Boccadoro, ITALY
Y.C. Chen, REPUBLIC OFCHINA
research, but at a basic level of chemistry,
are therefore the rate-limiting steps. The
J. Anthony Child, ENGLAND
physics, molecular and cellular biology, and
IMF is committed in its research program
Raymond L. Comenzo, USA
the like. Fundamental research involves
to support and accelerate clinical research
Meletios A. Dimopoulos, GREECE
organisms as diverse as yeast, worms, flies, and
development of the several new approaches
Brian G.M. Durie, USA
currently under development.
s
Dorotea Fantl, ARGENTINA
Ian Franklin, SCOTLAND
INNOVATION
ORIGIN
APPLICATION IN
EXAMPLE
Corporations or
MYELOMA
Gösta Gahrton, SWEDEN
other entities
Clinical Trials
Jean-Luc Harousseau, FRANCE
Vania Hungria, BRAZIL
Diagnostics
Douglas Joshua, AUSTRALIA
· Serum b2 microglobulin test
Pharmacia (Scandinavia) Clinical trials in the U.S.,
U.K., France, Australia
Tadamitsu Kishimoto, JAPAN
Heinz Ludwig, AUSTRIA
· MRI
Single inventor/
Clinical trials in U.S. and
Ian MacLennan, ENGLAND
developer: subsequently
Germany
sold to corporations
James S. Malpas, ENGLAND
Jayesh Mehta, USA
Supportive Care
Håkan Mellstedt, SWEDEN
· Recombinant erythropoietin
Johnson/Johnson;
First clinical trial in
(EPO)
Ortho Biotec; AMGEN
Austria
Angelina Rodriguez Morales, VENEZUELA
Gareth Morgan, ENGLAND
· Bisphosphonates
Several corporations
Pivotal trials in Finland,
Gregory R. Mundy, USA
(e.g. Chiron, Novartis)
U.K., and U.S.
(multi-national)
Amara Nouel, VENEZUELA
Martin M. Oken, USA
Myeloma Treatment
Linda Pilarski, CANADA
· Alpha Interferon
Schering-Plough
Early trials with Finnish
Raymond Powles, ENGLAND
and Roche
Red Cross; pivotal trial in
Italy with recombinant
David Roodman, USA
product
Jesus San Miguel, SPAIN
Seema Singhal, USA
· Standard Chemotherapy
­ Melphalan
Burroughs Welcome
Trials in U.K., U.S. and
Alan Solomon, USA
Canada
Pieter Sonneveld, THE NETHERLANDS
Benjamin Van Camp, BELGIUM
­ Adriamycin
Adria Laboratories
Cooperative group studies
plus VAD U.S. trial
Brian Van Ness, USA
4

---

AFTER ANY DIAGNOSIS
ly through my sister's recovery from a brain
chemotherapy symptoms, are less depressed,
tumor, and translate complex medical
and report lower levels of pain compared
records for my father-in-law, who recently
with more passive patients.
succumbed to colon cancer. I felt privileged
As frightening as it might be for
to help, and honored that they trusted me
patients to approach their doctor, most
enough to ask me to help find information
physicians are thrilled when their patients
about some very personal problems. That's
express an interest in becoming more active.
when I began thinking about writing the
Recently, I heard from a woman who had
book, to offer people without a health
read this book after being diagnosed with
researcher in the family a chance to gain
breast cancer. Because she was too nervous
access to the same medical information I
to approach her doctor directly, she wrote
had. The idea finally gelled after an inter-
him a letter explaining what she wanted,
view I had with an oncologist at Johns
and would he mind if she considered him her
Hopkins University. I asked him what was
health care partner. At her next office visit,
the first thing he told his newly diagnosed
he was enthusiastic about her plan, and their
Carol Svec
patients. Without hesitation, he said that
style of communicating immediately
the most important thing was to go out and
changed from passively exchanging informa-
By Carol Svec
gather as much information about their spe-
tion to having an active dialog.
cific disease as possible. Then he paused,
Physicians have a reason for being
"Getting diagnosed with an illness
sighed, and said, "Unfortunately, nobody
enthusiastic. An informed patient allows
is like hearing the starting pistol at the
knows how to do that."
doctors to focus on specific issues and treat-
beginning of a race. Whether it's a sprint or
That's where this book comes in.
ment, instead of spending time explaining
a marathon, a grueling endurance run or a
As a health writer and researcher, I need to
disease basics. In addition, patients are being
jog through the park, the race is yours alone.
locate and digest
called on to make
No one can run it for you."
"Research conducted over the past
information on a
decisions about
Those are the beginning lines of my
25 years has shown that patients who
wide variety of
their medical treat-
first book, AFTER ANY DIAGNOSIS: How
medical topics
are active in their health care
ments -- choices
to Take Action Against Your Illness Using the
quickly. The infor-
are physically and emotionally better off that can seem
Best and Most Current Medical Information
mation has to be
frightening in terms
Available, and they ring as true to me today
than more passive patients. "
current and accu-
of their risks or side
as they did in 1999 when I first wrote them.
rate, otherwise I'm out of a job. The stakes
effects. Informed and active patients, work-
The book is my attempt to help people "run
are even higher for those of you dealing with
ing in close partnership with their doctors,
a better race." My goal in writing it was to
a serious illness. The goal of this book is to
learn to make the best decisions for them-
help people find, understand, evaluate, and
guide you through the process of becoming a
selves. When doctors and patients share in
use medical information so they could
more active patient and, it is hoped, a
making medical decisions, they take into
become more active in their health care and
healthier person with a better quality of life.
account not only the medical pros and cons,
better able to participate fully in making
but also the patients' life priorities, experi-
shared medical decisions.
WHO ARE ACTIVE PATIENTS ?
ences, desires, and hopes for the future.
I'm not a doctor, but my experiences
The basics of becoming an active
have given me an up-close perspective of the
They are people who are involved
patient are simple, but putting them into
issues that are important to patients. I was
in understanding their disease, have a good
action can be difficult. I've spoken with
trained as a scientist, so I understand the
partnership with a physician they trust,
physicians who teach patients how to
processes of experimentation and the slow,
make monitoring their symptoms and man-
become more active who say that they them-
inch-by-inch nature of medical advances. I
aging their care a routine, and participate in
selves sometimes have difficulty putting
received a master's degree from the University
making shared medical decisions. It isn't
plans into action. It is hard to break old
of Toronto, with a specialty in health psy-
always easy, but the results are well worth
habits, but the changes are worth it. Here
chology. I've been doing research, in labora-
the effort. Research conducted over the past
are a few action items to guide you in the
tories or libraries, for more than 20 years, so
25 years has shown that patients who are
process of becoming an active patient:
I know how to find information quickly. For
the past 5 years, I've been a freelance health
active in their health care are physically and
·
Seek out and understand information
writer, and I consider myself a patient advo-
emotionally better off than more passive
about your disease and treatment.
cate. Throughout this book, I strive to be
patients. Patients who participate have a
Read as much as you can, ask ques-
objective in describing current medical prac-
better understanding of their illness, cope
tions, join support group... anything.
tices, and empathetic to the needs of people
with their disease better, are less anxious
who find themselves in the most frightening
before medical procedures, are hospitalized
·
Establish partnerships with your
and sometimes grueling times of their lives.
less frequently, and claim to have a better
doctors. Some doctors do this routinely;
Because of the nature of my work, I
quality of life. Informed patients also tend to
others need to be asked. Make it
get calls from friends and relatives all the
get better faster and maintain better health,
clear that you don't want to "take
time asking what I can tell them about a
perhaps because they seek out the best care.
over" for the doctor, but to participate
particular disease they've just had diagnosed.
Some studies have shown that active
in decisions and care issues.
patients with cancer experience fewer
5
I've had to inform and counsel my own fami-
Please see page 10

---

GALA 2002 HONOREE: Daniel E. Smith
FASHIONS4 A CURE
Mr. Smith is also the founder of
By Ashley S. Barit
One Voice Against Cancer (OVAC), a col-
My mother, Jerra S. Barit, was diag-
laboration of over 40 cancer and public
nosed with multiple myeloma in December
health organizations representing more than
of 1998, while I was still in high school. In
15 million Americans. OVAC delivers a
her honor, I organized the first annual
unified message to Congress and the White
"Fashions 4 A Cure" fundraiser on May 8,
House on the need for increased cancer-
1999. With the help of friends and family,
related appropriations.
OVAC began in January 2000 as a
and the support of local businesses, that first
working group of public interest organizations
event raised $5,000 to support myeloma
dedicated to ensuring that the federal gov-
research. Since then, three more events
ernment provides the necessary investments
have been held, the most recent on March
for cancer research and application programs.
16, 2002. The "Fashions 4 A Cure" program
It has since grown into an effective lobby
has now raised $45,000 for myeloma research.
coalition on cancer funding that has enabled
the cancer community to enhance policy-
makers' awareness of the need for substantial
Daniel E. Smith
increases in essential cancer programs.
The IMF is pleased to honor Daniel
Lawmakers and federal agencies are asked
E. Smith at the Ribbon of Hope-Making a
also to focus efforts on research and outreach
World of Difference 12th Anniversary Gala, to
into ethnic minority and other undeserved
be held at The Ritz-Carlton in Washington,
populations, many of which have a higher
D.C. on October 5th, 2002.
risk and mortality from various forms of cancer.
Mr. Smith is the National Vice
OVAC `s united front enhances each
President of federal and state government
organization's ability to attain the funding
relations for the American Cancer Society
levels necessary to win the war on cancer
(ACS). He is responsible for coordinating
and to equip those facing cancer with the
the development and execution of strategic
tools they need to fight this deadly disease.
Jerra and Ahley Barit (top row) with "Fashions 4 A Cure" models
federal and state advocacy programs and
OVAC commits its participating organizations
Becoming involved with "Fashions
practices on behalf of the ACS's two million
to cooperative efforts that increase understand-
4 A Cure" has changed the lives of the Barit
volunteers and 28 million donors.
ing of the need for both cancer research and
Family. It has bought us closer together.
Prior to joining the ACS, Mr. Smith
application programs. At the same time,
Also, it has helped us reconnect with friends
worked for 10 years in the U.S. Senate where
OVAC empowers its volunteers and those
and family. Our hope is that the funds we
he held several senior staff positions in the
touched by cancer to deliver this message
have raised will help my mom and the thou-
office of Senator Tom Harkin of Iowa,
creatively and powerfully to policymakers.
sands of other myeloma patients.
including four years as Chief of Staff. Mr.
A native of Iowa, Mr. Smith gradu-
Since my first contact with the IMF
Smith also served as Minority Staff Director
ated from the University of Iowa with high-
four years ago, I have become involved in
for the Senate Committee on Agriculture,
est distinction. He received his law degree
many activities with the IMF. My family
Nutrition and Forestry. Mr. Smith was
from the Georgetown University Law
and I have attended the IMF Patient &
responsible for drafting major pieces of legis-
Center in Washington, D.C. s
Family Seminars, Senate hearings, and the
lation and building a consensus around a
variety of issues with other members of
IMF Ribbon of Hope ­ Making a World of
GALA UPDATE
Congress, the White House, federal regula-
Difference Gala. I would like to thank the
tory agencies, and constituents. He also has
staff of the IMF, especially Susie Novis,
The IMF is pleased to announce
extensive experience in a number of
Romi Brozeit and Pam Jones for their con-
that, for the third year in a row, the incom-
Presidential, Senatorial, and Congressional
tinued support. s
parable Robin Leach will serve as the Gala
campaigns including Gore 1988 and State
Master of Ceremonies and Guest Auctioneer.
Director for Clinton/Gore in 1992.
Our wonderful Dinner Chairs, Carol
Based in Washington, D.C., Mr.
and Benson Klein, are hard at work with the
Smith leads the ACS's advocacy team in the
members of the Gala committees gathering
development and implementation of the
auction items and packages. If you have any
Society's key legislative priorities:
ideas or items you wish to contribute, contact
Carol at (301) 469-7457 or carol@kbk.org.
1.
Increase Investments For Cancer
If you wish to attend the Gala, please
Research and Application Programs.
contact Suzanne Battaglia at (800) 452-2873
2.
Increase Access to Cancer Care,
ext. 227 or SBattaglia@myeloma.org. For other
Prevention, and Awareness Programs.
ways of participating in the Gala event,
3.
Reduce Health Disparities Among Minorities
please see the enclosed insert .
and the Medical y Underserved.
With your help, this is going to be
4.
Reduce And Prevent Suffering from
the best event yet. We look forward to see-
6
Tobacco-Related Illness.
ing you there! s
Adult models of the "Fashions 4 A Cure" event

---

OVAC ADVOCACYDAY
almost $4.2 billion on cancer research. To
The key is to identify, through research, the
compare, the American Cancer Society, the
targets that trigger the malignant growth of
largest cancer research funding organization
cancer cells. In the case of myeloma, there
in the world, will invest more than $100
may be dozens, if not hundreds, of targets
million over the same period. And one of
that must be identified. And some of the
the most visible advocacy organizations, the
targets in myeloma, at the molecular level,
Susan G. Komen Foundation for breast can-
may look more like other traditional cancer
cer research, has raised more than $240 mil-
types -- lung, colon, kidney, or pancreatic
lion since its inception in 1982.
-- than other hematological cancers.
These numbers demonstrate why
Congress recognized this opportunity
political advocacy is as important a task for
in last year's appropriations bill when it declared
members of the myeloma community as other
"that NIH should distribute funding on the
fundraising activities. While many organiza-
basis of scientific opportunity" and "urge[d
tions, including the IMF, annually raise
NIH] and the Administration to continue to
cumulative millions for research, our federal
resist pressures to earmark, set-aside and oth-
Greg Brozeit of the IMF shares a moment with
government appropriates annual billions for
erwise politicize" funding for medical
former President George and First Lady Barbara Bush,
co-chairs of the National Dialogue on Cancer, at one of last year's
cancer research agencies and institutes. But
research programs (House Report 107-229).
semi-annual meetings. The IMF is a Partner in the NDC,
as we engage in community fundraisers for
In other words, the appropriators,
a 160-member coalition dedicated to shaping a national
research, let us also commit at least as much
those who control the purse strings of the
cancer agenda to prevent one million new cancer cases and
500,000 cancer deaths by 2010.
time and effort to educate our members of
NIH and NCI, specifically granted the direc-
Congress about the value of allocating our
tors of the institutes the authority to ignore
By Greg Brozeit
fair share of tax dollars to cancer research.
congressional attempts by other committees
The 3rd annual One Voice Against
The IMF also believes that the
to authorize specific body part or tumor type
Cancer (OVAC) Advocacy Day will be held
OVAC agenda is the best mechanism to
programs in favor of "scientific opportunity."
on June 3-4, 2002 at the Hyatt Regency on
support newly appointed NCI Director Dr.
More precisely, they gave credence to NCI
Washington, DC's Capitol Hill. The IMF
Andrew von Eschenbach's emphasis on the
Director von Eschenbach's vision of the
supports the OVAC funding agenda because
New Paradigm of
New Paradigm in
"Your view that promoting full funding
it is the best hope for increased federal fund-
cancer research.
cancer research.
for the NCI Director's Bypass Budget
ing to benefit all cancer patients, especially
This New
Director von
those with an interest in myeloma and other
Paradigm places
request will best serve your constituents
Eschenbach
under-funded orphan cancers. The IMF
less emphasis on
is an enlightened one. A rising tide
underscored this
website has posted registration information.
research by body
view in a March
does indeed raise all ships."
Senator Tom Harkin (D-IA), chair-
part or tumor
15, 2002 letter to
NCI Director Dr. Andrew von Eschenbach
man of the Senate Appropriations Subcom-
type. This new
the IMF stating,
in a March 15, 2002 letter to the IMF
mittee on Labor, Health and Human Services,
approach will put
"Your view that
and Education -- which is responsible for
more emphasis on the most promising, state-
promoting full funding for the NCI
funding most federal cancer research -- has
of-the-art research of genomics, drugs that
Director's Bypass Budget request will best
scheduled a hearing to highlight the OVAC
treat cancer at the molecular level.
serve your constituents is an enlightened
agenda on the morning of June 4. The hear-
The traditional way of thinking
one. A rising tide does indeed raise all ships."
ing is expected to focus attention on funding
about cancer treatment has been "search and
The OVAC agenda -- which
of orphan cancers, especially multiple
destroy," which is best exemplified by
maintains support for the 5-year funding
myeloma and pancreatic cancer, and deter-
chemo-therapy. In plain English, these ther-
doubling pledge for NIH, fulfillment of the
mining methods of accelerating research
apies try to kill cancers with toxic drugs with
NCI Director's annual Bypass Budget pro-
that will benefit today's cancer patients.
the hope that enough healthy cells survive
posal, and the applied research programs at
OVAC is a coalition of the spec-
the process to maintain the continued
CDC -- is the most logical and constructive
trum of cancer advocacy organizations which
health of the patient. As too many of us
plan to achieve those goals in the foresee-
is dedicated to increasing funding for diversi-
know, some of these treatments are as bad or
able future.
fied research and prevention programs at the
worse than the disease they are trying to
National Institutes of Health (NIH), the
eliminate.
THE BIGGER PICTURE
National Cancer Institute (NCI), and can-
The New Paradigm, which replaces the
Indirectly, fulfillment of the
cer programs at Centers for Disease Control
"search and destroy" mindset with "command
OVAC agenda would also support the goals
and Prevention (CDC). OVAC has been
and control," demonstrated with drugs like
of the IMF's other primary legislative priori-
credited with maintaining recent funding
Gleevec® for chronic myelogenous leukemia,
ty -- enactment of the Access to Cancer
increases for federal cancer research funding.
Iressa® for lung cancer, or Herceptin® for breast
Therapies Act (H.R. 1624 and S. 913).
cancer, targets the molecular mechanisms that
This legislation would provide Medicare
THE NEW PARADIGM
trigger growth of cancers without debilitating or
coverage for all oral cancer drugs. In addi-
Why support the OVAC agenda
destroying healthy cells, organs, or systems.
tion to the drugs mentioned above, this bill
and not just myeloma research? The funding
When we look at cancer at the mol-
would include coverage for Thalidomid® and
figures and the state of the science help explain.
ecular level, targets will not be conveniently
This year the NCI will spend
Please see page 10
7
categorized through body parts or tumor types.

---

A PATIENT'S PERSPECTIVE: A Diet to Control Pain
Did You Know?
by Coralie W. Crafton
· Carbonated beverages
· Black & Cayenne pepper
I am a wife and proud mother of
· Peanuts or peanut butter
two daughters. When I retired from teaching
The Neuropathy Support Group of
Los
· Berries (except blueberries)
elementary general and vocal music, my hus-
Angeles meets monthly at the UCLA
· Red, Yellow or Green bell peppers
band and I decided to invest in a few more
· Vinegar, Pickles & Sauerkraut
Medical Center. For more information,
rental properties for me to manage. My hus-
· Processed foods & chemical preservatives
please call Cathy at (310) 286-7442.
band and I sing in our church choir and I am
· Sugar, Aspartame & Saccharin
active in the Lancaster Opera Company.
In November of 1998, back pain
THESE FOODS HELP MY BODY BE ALKALINE :
caused me to see my family doctor. A couple
· Soft cooked eggs
Online registration for the June 3-4,
of months of chiropractic treatments did not
· Juice of one lemon in 6-8 oz. of water
2002, third annual One Voice Against
relieve the pain. My family physician took a
· Fresh fruit such as tart apples and
Cancer Lobby Days is available at
SED (sedimentation) rate and made the ini-
tropicals such as papaya, mango, tangelos,
www.b-there.com/ersengine/ovac2002.
tial diagnosis of myeloma. I saw an oncologist
tangerines, clementines, and grapefruit
and he confirmed the diagnosis. I was 53.
(but no oranges!). Pears, grapes, and
Our family was shocked and scared.
stone fruits are bland and combine well
At first I thought it was a definite death sen-
with peaches, apricots, and cherries.
To obtain a free copy of the Pain Action
tence. Everyone I had known who had can-
· Most vegetables are alkaline. Dark
Guide, please call the American Pain
cer had died from it. Now I think of my dis-
salad greens, raw spinach, and kale have
Foundation at (888) 615-PAIN or send
ease more like a chronic illness. I can live
more nutrients than iceberg lettuce.
with it and still have a full, enjoyable life.
· Nuts such as pecans, almonds, and
an email to info@painfoundation.org.
In June of 1999, I received my first
cashews are good protein. Wash and
treatment of chemotherapy (alkeran and
blanche or roast them to remove mold.
prednisone) and Aredia. I became so weak
· White chicken, white turkey, white fish.
Cancer patients dealing with insurance,
that I had to hold onto furniture to walk
DO NOT COMBINE :
around the house. Because of that experi-
job discrimination, and debt crisis issues
· Citrus and bananas
ence I chose to try several alternative treat-
can appeal for assistance to the Patient
· Citrus and any cereal
ments, but they did not stop my myeloma
Advocate Foundation at (800) 532-5274
· Starch and protein at the same meal
from progressing to Stage III.
or visit www.patientadvocate.org.
In March of 2000, I decided to go
MAKE POSITIVE LIFESTYLE CHOICES :
back on chemotherapy, but this time with-
· Do not allow your activities to tire you.
out the steroid. I tolerated the alkeran and
Rest for 10 minutes for every hour of
Aredia very well, and by October my condi-
Patients who cannot afford to pay for
activity. An afternoon nap is a must to
tion had improved 75%! In February of
avoid fatigue. A fatigued body is more
medications may qualify for the drug
2001, my oncologist stopped the chemother-
likely to become acidic and painful.
manufacturers' Indigent Programs. Your
apy and started me on thalidomide. My test
physician must apply on your behalf.
results continue to show improvement. In
For two years, this program has
May of 2001, I celebrated my 56th birthday.
helped me be pain free, vigorous, and cheer-
After my diagnosis, I spoke with a
ful. No two people are alike, but I wanted
friend, retired homeopathic osteopath Dr.
to share my experience with others looking
Dendreon Corporation has received
Luelle Hamilton, about the extreme back
for ways beyond pain medication to manage
orphan drug status from the U.S. Food
pain I was experiencing. She put me on a
their suffering. The improvement in the
and Drug Administration (FDA) for
diet to turn the acidity of my body to alka-
quality of my life has definitely been worth
linity, because an alkaline body experiences
the lifestyle change and effort. There is
the company's therapeutic vaccine for
less pain. Even when I was not using Aredia
hope. s
multiple myeloma, Mylovenge (TM).
(June 1999 - March 2000), this diet helped
Orphan drug designation by the FDA is
me manage my back pain. I did not need to
designed to encourage research and
use pain pills.
If you or someone you know
development of new therapies for dis-
THESE FOODS MAKE THE BODY ACIDIC .
has a patient story that
eases that affect fewer than 200,000
I HAVE ELIMINATED THEM FROM MY DIET :
might be of interest to
people in the United States. In receiv-
· Dairy products
· Mushrooms
our readers, please contact:
ing orphan drug status, the company is
· White potatoes
· Pineapple
· Tomatoes
· Eggplant
Marya Kazakova, Publications Editor
eligible for tax credits for related clinical
· Red meats
· Plums
International Myeloma Foundation
development costs and assistance from
· White rice
· Prunes
12650 Riverside Drive, Suite 206
the FDA to facilitate the regulatory
· Pasta
· Wheat
North Hollywood, CA 91607-3421
review and approval process.
· Oranges
· Limes
(800) 452-2873 ext. 222
· All dry legumes
mkazakova@myeloma.org
8

---

Atlanta IMF Patient & Family Seminar Report
The seminar was a fast-moving one
with information being presented by an
extremely capable and well recognized
myeloma expert faculty that is unrivaled.
Each session lasted about 20-30 minutes and
there was always an opportunity to ask ques-
tions. I must admit that sometimes the ques-
tions got a little repetitive and off subject,
but what can you expect when you've got
300-400 concerned and anxious people in
Susie Novis with IMF Gold Benefactors Jan and Charles Briscoe
note of his thoughtful comparisons of the
Leon Parker
various treatments that I had chosen and those
By Leon Parker
that had been chosen for me since my diagnosis.
Dr. David Vesole addressed the
The IMF Atlanta Patient & Family
topic Transplantation and covered it well. I
Seminar was held on March 8-9, 2002. This
found the talk interesting but doubt that
seminar originally had been scheduled for
transplantation is something that I would
September, 2001, but had to be postponed
choose to do again. The remission after my
because of the events of 9/11.
Dr. Bart Barlogie takes the podium
attendance ­ many of whom really need per-
sonal and subjective advice.
The first session was Myeloma 101 ,
a primer of all the basics that we need to know
and tend to forget if we've not focused on it
recently. It was very good for me because I
am one who tends to move away from the
"Myeloma World" and on to living my life
for periods of time when I am really feeling
well. When I was initially diagnosed back in
Cathy Lebkuecher accepts the Francesca Thompson Distinguished
IMFers Dr. and Mrs. Joseph Lerner with Dr. Robert A. Kyle
May, 1996, I spent hours poring over materials
Service Award from Michael Katz as husband Andrew looks on
This seminar was my second chance
transplant lasted about eighteen months and
to attend one of these very informative IMF
I understand that the remissions get shorter
learning and networking opportunities. I
with each transplant. Never say never, but
attended my first IMF seminar here in
it now seems to me that if you can maintain
Atlanta about three years ago and found it
control of this disease by utilizing any of the
to be extremely enlightening. The IMF staff
other less invasive methods of treatment,
was very friendly and very well organized.
then that certainly is the way to go.
The registrants of the convention covered
There was also a session conducted
people across the entire treatment spectrum.
by Dr. David Roodman covering Bone
There were people there who had been diag-
nosed as recently as a couple of months ago
Please see page 10
and people who were survivors of 15 years.
Dr. Vesole addresses participants of a break-out group
and data trying to learn something about this
little-known and devastating disease. Since
then, I have had a stem cell transplant and
various regimens of chemotheraphy. I have
been on thalidomide since August, 2000.
It's been a lifesaver and has stabilized my
counts, and I now enjoy a good quality of life.
The next session was Standard
Therapy by Dr. Robert Kyle of the Mayo
Clinic. Dr. Kyle covered the various treatment
options that one has when diagnosed. I took
IMF Gold Benefactor Chuck Newman with Susie Novis
9
Susie Novis Dr. Alice Caldwell

---

ASK THE EXPERTS ­ continued
AFTER ANYDIAGNOSIS­ continued
to produce the drugs and therapies needed
by all cancer patients.
observation will in time lead us to under-
·
Be entirely open with your doctors...
And the future of the IMF advoca-
stand, and possibly prevent, exposure to fac-
even about the embarrassing things,
cy agenda will not be dictated by trying to
tors which cause myeloma, there is another
and even if you think it makes you
carve out turf for myeloma research. It will,
use to which this information can be put. In
look bad (such as not taking med-
instead, ensure that myeloma is represented
many ways, the current treatments used for
ication). There are solutions to
in the new research. This search for new
myeloma can be considered as toxic expo-
many problems, but doctors are not
therapeutic targets will create a logical, visi-
sure where the benefits of exposure far out-
mind-readers and cannot help if
ble path from incurable condition to chron-
weigh the toxic effects. However, in some
they don't know what's wrong.
ic, manageable disease to, ultimately, a cure
individuals the risks of side effects may be
for myeloma. s
greater, and where alternate treatment
·
Don't leave the office without
options are available it may be preferable to
understanding what your doctor
SEMINAR ­ continued
use these. Genetic testing is beginning to
said. If the doctor is using words
help in this area. The GST P1 subtype of
you don't understand, ask him or
Disease . Zometa®, recently approved to
glutathione S transferase is important in the
her to say it in a different way. If
help myeloma patients with bone disease, is
metabolism of some of the most effective
you run out of time, ask if a nurse or
given in just 15 minutes versus the two
chemotherapy agents used for the treatment
other professional could explain
hours that Aredia® takes. That's really con-
of myeloma (alkylating agents like melpha-
things more clearly. You shouldn't
venient for a lot of people. However, hav-
ing had a kidney issue in the past, I am going
lan and cyclophosphamide). It has a num-
need a translator to decode medical
to play it safe and stick with Aredia®. If it
ber of different genetic variants, which can
buzzwords when you visit a doctor.
ain't broke, don't fix it!
decrease its activity. Individuals who have
·
Bring a friend to help you ask ques-
Dr. Alec Goldenberg talked about
inherited the under-active variants seem to
tions if you are nervous or shy.
the new Goldenberg Snare Coil that has
have an increased risk of side effects but
been developed to help make bone marrow
seem to have a better outcome after treat-
·
Prepare for office visits by bringing
biopsies a lot more bearable. Sounds good!
ment. This approach is not fully developed
records of anything that has happened
The highlights of the seminar, from
and could not be used to direct treatment at
since your last visit, including
my perspective, were the sessions that
present, but if this sort of testing is integrat-
symptoms, medication side effects,
focused on Novel Therapies . Thankfully,
ed into future trials it will allow us to use our
and the results of tests or medications
there are many: PS-341, Genasense, Beta
treatments better. Genetic testing can also
prescribed by other doctors. If you
LT, Mylovenge, Neovastat, O-6-benzylgua-
be used to help in the development of new
have questions, write them down in
nine, Panzem®, Trisenox®, and others. All
treatments. Many pharmaceutical compa-
advance so you don't forget.
of the above mentioned are already in either
nies discard active therapeutic agents
Phase II or Phase III trials. The trial results
because the rare individual develops side
Those are the basics, but you can
with PS-341 (Millennium Pharmaceuticals)
effects. These individuals often have a
become as involved as you want to be.
have been so good that they are widening
defined genetic make up, and if this can be
AFTER ANY DIAGNOSIS can guide you
the Phase III trials to include more medical
recognised, the drug can be reserved for peo-
through the process. I've heard doctors and
facilities and more people across the coun-
ple who do not get side effects and will bene-
patients say that in health matters, peace of
try. The problem there for me is that you
fit from treatment. The study of this area is
mind comes knowing that you've done
are not eligible for the trials if you suffer
called pharmacogenomics. These tests have
everything possible to take control of your
from neuropathy. I do have a neuropathy
to be distinguished from tests on the myelo-
health. That's the best any of us can do. s
problem as a result of taking thalidomide.
ma tumour DNA. Tests on this material
Not to worry. With all of the new
using the new genetic approaches are
ADVOCACY­ continued
drugs in trial, and with more money than
designed with the aim of predicting how the
ever before going into myeloma research, I
tumour cells will respond to treatment.
all the future genomics-based drugs that will
left the seminar feeling more optimistic than
Access to genetic information is
target tumor growth at the molecular level.
ever. It is inevitable that some drug will be
one of the key developments that has given
Currently, it is estimated that 5-10%
discovered to control multiple myeloma the
doctors a new tool to develop more effective
of all cancer drugs are taken orally. In the
same way many chronic diseases are controlled.
prevention and treatment strategies for
coming decade, that figure is expected to rise
I left this seminar feeling very informed and
myeloma. It is important to use this new
to at least 25%. The logical outcome of the
very confident that there is more reason
approach in the correct clinical settings:
New Paradigm will be a dramatic acceleration
than ever before for real hope. s
clinical trials and case control studies. This
in the discovery and approval of genomic drugs
means that patients will be asked to give
that may push those percentages even higher,
their permission for their blood samples to
and limit ­ and hopefully eliminate ­ the
be taken, stored, and tested. If we are going
need for "search and destroy" chemotherapies.
to make effective progress in eradicating the
Although this legislation is not a
clinical consequences of myeloma, it is
part of the OVAC agenda, which is appro-
important that patients take part in these
priations-based, it completes the vision of
studies. These studies have to be large, and
the New Paradigm. The IMF recognizes
consequently doctors and scientists will have
that support of a comprehensive, OVAC-
to come together in large groupings with the
based funding mechanism will provide the
common goal of understanding and treating
comprehensive framework that links federal
this disease. s
IMFers sign up for break-out sessions at the Altanta Seminar
10
activity to the translational research needed

---

TWELVE SIMPLE TRUTHS TO SOOTHE STRESS
not only in our heads, but in fact at a cellu-
1. Stress Happens. Every Day.
lar level. Endorphins ­ morphine-like sub-
2. Life is always about choices...
stances produced naturally in the body-mind
even when it doesn't feel that way.
­ attach to receptor sites and relay "stop-
3. Mind informs Body. Stress
pain" messages, sometimes easing anxiety,
impacts our health, r elationships...
lifting depression, lightening mood as well.
and who we will become.
"Feel-Good" activities, and finding
humor in exasperating circumstances, are
4. How we manage stress deter mines
drug-free ways to reduce pain and stress,
the quality of our lives.
enhancing overall well-being. Life can be
5. Every action stems from one of
very difficult, and brings extraordinary chal-
two roots: Love... or Fear.
lenges to many. But some stress is influenced
6. "The Golden Rule" is still a very
by perspective. How we experience an event
good idea.
determines its "stress value" for us. A positive
7. One smile can turn two people's
outlook, humor, gentle touch, and honest,
Susie Mantell
entire day around.
supportive relationships all increase the
8. Love Heals. So do Laughter and
By Susie Mantell
"Feel-Good" factor.
Forgiveness. Anger never will.
I wish you all those things and
You'd be hard-pressed to find an
above all, Hope. Hope is what sees us
9. To love anything requires a leap
oncologist's waiting room not brimming
through our most challenging moments, and
of faith ­ in ourselves, others,
with illness-related stress. People often
reminds us of the promise that just may be
and the power of Love itself.
arrive already deeply frustrated by previous
around the very next corner! s
10.We can spend a lifetime grieving
attempts at diagnosis and care, presenting
what was, or what never was...
overtaxed systems ravaged by stress, sleep-
Note: Susie Mantell is an award-winning
or living for what is, or can be.
lessness, and pain. Paradigm-shifting work is
stress-relief facilitator and author of "Your
11. We'r e never too old to learn or change.
underway examining the relationships
Present: A Half-Hour of Peace" (CD/Cassette).
12. We grow toward the light...
between emotions and health, transmitters,
To subscribe to Susie's free e-mail Stress-
or wither on the vine.
peptides; suggesting that emotions reside
Tips, please visit www.relaxintuit.com.
quantity:
One Year Subscription to Myeloma Today (US)
$_____ (donation)
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One Year Subscription to Myeloma Today (Int'l) $_____ (donation plus $15.00)_______
Back Issues of Myeloma Today (each)
$ 6.50 £ 5.50
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Myeloma Today Anthology I:
Transplantation for Multiple Myeloma
$10.00
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Myeloma Today Anthology II:
Articles of Continuing Interest
$10.00
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FNEW:
Comprehensive Guide to Banff
$_____ (donation)
________
Cooking for a Cure
$14.00
________
Living with Myeloma: Survivor Stories
$13.95
________
WAM 2000 Syllabus Books
$40.00 (while supplies last)
________
Audio Tapes 2000 Tysons Corner Patient Seminar $35.00
________
Audio Tapes 1999 Los Angeles Patient Seminar $35.00
________
Audio Tapes 1999 Atlanta Patient Seminar
$35.00
________
Audio Tapes 1998 Cleveland Patient Seminar
$35.00
________
Audio Tapes 1998 Miami Patient Seminar
$35.00
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Audio Tapes 1998 Toronto Patient Seminar
$35.00
________
IMF Logo T-Shirt
$12.00 £10.00
________
IMF Baseball Cap
$15.00
________
Going for the Cure
by Dr. Francesca M. Thompson
$11.50 £ 7.00
________
Coping with Myeloma
Poetry by Muriel Kulwin
$15.00
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Shipping & handling (International orders only) $ 3.85 £2.50
________
Donation to the IMF
$_____ £_____
________
Total: $_____ £_____
________

---

News & Notes
NEW MYELOMA TEXTBOOK
BISPHOSPHONATES
IMF Scientific Advisors Drs. Seema
Patients who receive infusions of
Singhal and Jayesh Mehta have co-edited a
Aredia® (pamidronate) should be aware that
textbook titled Myeloma ­ a comprehensive
there are now alternative versions of this bis-
text on multiple myeloma and related dis-
phosphonate on the market. One generic
eases. The forward for the textbook was
pamidronate is being distributed by Bedford
written by IMF Chairman of the Board and
Laboratories of Bedford, Ohio. Others may
Scientific Advisor Dr. Brian G.M. Durie.
soon be on the market. The IMF encourages
Written for hematologists, oncologists, and
patients to be aware if you are receiving the
researchers, the book covers all aspects of
brand-name Aredia® or a generic pamidronate.
myeloma ­ the molecular and biological
In addition, as the IMF has previ-
background, clinical aspects and investiga-
ously reported, the FDA approved a new bis-
Nancy Baxter and Debbie Birns
tions, and developments in therapy. The
phosphonate, Zometa® (zoledronic acid), for
book is available through www.amazon.com .
the treatment of multiple myeloma. The
IMF H OTLINE SERVICE EXPANDS
drug was originally approved in August 2001
for the treatment of hypercalcemia of malig-
The IMF is pleased to announce the
nancy, a common metabolic complication
recent addition of two new staffers to our
associated with cancer. The safety and
team. The IMF Hotline coverage has been
effectiveness of Zometa® was supported by
expanded with the recruitment of cancer
three large international trials that included
information specialists Debbie Birns and
more than 3,000 subjects. Results demon-
Nancy Baxter. Both Debbie and Nancy
strated that Zometa® decreased skeletal com-
were trained as cancer information special-
plications of subjects with multiple myeloma
ists by the National Cancer Institute-spon-
or metastases from solid tumors.
IMF Scientific Advisors Drs. Robert
sored information line at UCLA's Jonsson
Kyle and James Berenson concur that
Comprehensive Cancer Center. They are
Zometa® provides a convenient alternative
available Monday through Friday to answer
to pamidronate for the myeloma patient
your questions about multiple myeloma
with skeletal disease. With an efficacy pro-
treatments and side effects, supportive care
file similar to that of Aredia®, Zometa®'s
issues, clinical trials, and resources available
major advantage is its infusion time of 15
to myeloma patients and their families. You
minutes rather than the 2 to 4 hours
are also welcome to continue to submit your
required for Aredia®. For more information
questions and concerns via e-mail at
on Zometa, please visit the product web site
TheIMF@myeloma.org.
at www.zometa.com.
International Myeloma Foundation
12650 Riverside Drive, Suite 206
NON-PROFIT
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
U.S.A.
Address Service Requested
PAID
PERMIT NO. 665
Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cur
e.

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