AUGUST 2003
VOLUME 5 NUMBER 7
A PUBLICATION OF THE INTERNATIONAL MYELOMA FOUNDATION
Dear Reader,
During the week of August 10th to
August promises to be a very busy
August 17th, all over the country, people
month for the IMF and the myeloma commu-
just like you will be mailing letters to their
nity. The 2nd Annual Myeloma Awareness
friends and relatives asking for their support
Week will take place August 10th to August
of myeloma research and other important
HIGHLIGHTS
17th. Several events are scheduled across the
IMF programs which benefit the myeloma
country during the week itself and during the
community. The Mail For The Cure cam-
days preceding and following this week.
paign is already well on its way, with IMFer
On August 2nd, the IMF will honor
Terry Herman leading the way (please see
Dear Reader
Dr. Robert Kyle for a lifetime of service to the
page 9 for an interview with Terry).
Page 1
myeloma community. The IMF has estab-
On August 9th, the Charity Golf
lished the Robert A. Kyle Lifetime
Outing at Stone Creek in Omaha, Nebraska,
IMF Support Group Leaders Retreat
Achievement Award to recognize doctors for
will feature two person teams and 27 holes
outstanding contributions to the field of
including a 9 hole scramble, 9 hole alternating
Page 2
myeloma. Dr. Kyle is
shot, and 9 hole individ-
founder of the myelo-
ual ball. Proceeds from
Ask the Expert:
ma and related diseases
this event will go to
The Pathogenesis and Treatment of
research group at the
support IMF programs.
Multiple Myeloma Bone Disease
world-renowned Mayo
On August 15th
Page 3
Clinic. I first heard
and 16th, the Atlanta
the name Dr. Robert
IMF Patient &
A. Kyle, fifteen years
Family Interactive
The Good, the Bad, and the Ugly
ago, when Brian Novis
Seminar will take place
of Cancer Public Policy
was searching for the
at Emory University
Page 5
best myeloma doctor
in Atlanta, Georgia.
possible. It would be
This two-day intensive
IMF Calendar
hard to find someone
seminar is designed to
else with more experi-
meet the changing
Page 6
ence, knowledge, and
needs of today's myelo-
expertise than Dr.
ma patients and their
Scientific Advisor Profile:
Kyle. I could hardly
families, providing up-
Meet New Members of the IMF
have imagined that one
to-date practical and
Robert A. Kyle, M.D.
Scientific Advisory Board
day he would become
useful information pre-
Page 6
the very good friend that he is today. Bob is a
sented by the top practitioners from around
true gentleman, whose kindness and caring is
the country. The seminar will feature guest
felt by patients and colleagues alike. Bob was
speaker Dr. Nancy Lee of the CDC.
IMFer Profile:
the first person that Dr. Brian Durie contacted
On August 16th, the Mile High
Terry Herman Shares Her Story
when he and Brian Novis came up with the
March for Myeloma will take place in Lake
Page 9
idea to start the IMF. And true to his nature,
Arrowhead, California. The walk-a-thon is
Bob jumped right into the project, and became
being organized by Lisa Doyle in honor of
News & Notes
a founding member of the IMF Board of
her father who has myeloma.
Directors and Chairman of the IMF Scientific
The Donate-A-Phone program is
Page 12
Advisory Board. Thirteen years later he
also being rolled out during Awareness Week.
maintains those positions - that's dedication. I
There is an estimated 30 million used cell
look forward to continuing to work with Bob,
phones lying around in America's homes,
who brings together doctors, researchers,
just waiting to be reprogrammed, refurbished,
This issue of
nurses, and healthcare providers to help the
or recycled. IMFers will be setting up col-
myeloma community. It is an honor and a
lection boxes around the country to help with
Myeloma Today
pleasure for the IMF to present him with the
this exciting new program. The funds
Robert A. Kyle Lifetime Achievement
raised will benefit local myeloma support
is supported by
Award. There is no one more deserving.
groups as well as the myeloma community
The presentation will take place in Rochester,
at large.
Novartis Pharmaceuticals
Minnesota, in the presence of family, friends,
Susie Novis
associates, and fellows.
President

---

INTERNATIONAL MYELOMA FOUNDATION
IMF SUPPORT GROUP LEADER RETREAT
Dedicated to improving the quality of life
of myeloma patients while working
By Chuck Koval
toward prevention and a cure.
Forty support group leaders, co-
Founder
Brian D. Novis
leaders, representatives, and IMF staff
participated in the fourth annual IMF
President
Support Group Leader Retreat, held June
Susie Novis
27-29 at Duke University in Durham,
Board of Directors
North Carolina. The retreat lived up to
Chairman Dr. Brian G.M. Durie
the expectations of regular attendees of
Michael B. Bell
past retreats. This was the first retreat
Mark DiCicilia
experience for nearly half of the group.
Michael S. Katz
(l-r) Judith Hartig-Osanka, Roger Buffett,
Benson Klein
Judging by their reactions, we expect to
Pat Koval, Chuck Koval, Jane Buffett
Dr. Robert A. Kyle
see them regularly at future IMF retreats.
helped gain rapid approval of this drug.
Isabelle Lousada
In keeping with the successful
Dr. Edith Mitchell
Dr. Gregory R. Mundy
format of previous retreats, the first half
Charles Newman
of the morning was dedicated to group
Susie Novis
introductions and expectations each
Richard H. Saletan
group brought to the retreat. After the
John L. Salter
E. Michael D. Scott
open discussion, "What Works ­ What
R. Michael Shaw
doesn't", it was time for the first of the
Donald B. Springer
invited speakers.
Donald R. Woodward
Patty Delaney of the Food and
IMF Headquarters
Drug Administration described her role
12650 Riverside Drive, Suite 206
within the FDA. Due to plane difficul-
North Hollywood, CA 91607-3421 U.S.A.
Susie Novis and Mike Katz
ties, Patty had to use the telephone to
Tel: (800) 452-2873 or (818) 487-7455
The Friday evening kick-off
share her message. Thanks to the quick
Fax: (818) 487-7454
E-mail: TheIMF@myeloma.org
started with a first class welcome recep-
Website: www.myeloma.org
tion. A wonderful dinner served in the
tradition of a fine hotel followed. In a
Kelly Cox
lively welcome address, Susie Novis
kcox@myeloma.org
gave us details on the new IMF initia-
Suzanne Battaglia, Special Events
tive, `Bank On A CureTM'. This may
sbattaglia@myeloma.org
prove to be one of the most significant
contributions to the future management
Nancy Baxter, Hotline Coordinator
nbaxter@myeloma.org
of myeloma. After much excitement,
the travelers were ready to retire and
Debbie Birns, Hotline Coordinator
prepare for the Saturday schedule.
dbirns@myeloma.org
Ken and Mary Makowka, Robin and Michael Tuohy
Michele Cherney, Exec. Asst. to Ms. Novis
work of Mike Katz and staff, the
mcherney@myeloma.org
PowerPoint slides Patty prepared were
easily shared with the attendees. The
Spencer Howard, Meeting & Event Services
showard@myeloma.org
presentation was an insightful look at
the role of the FDA from the start of the
Marya Kazakova, Publications Editor
drug approval process, through approval,
mkazakova@myeloma.org
and follow-up post-approval drug use.
Kemo Lee, Subscriptions & Merchandise
She clarified some of the limitations
klee@myeloma.org
faced by the FDA throughout the
(l-r) Bill Hollowell, Sharon Madagan, Deborah Eller,
process, particularly the inability to
Carole Menacker, Support Group Liaison
Nancy Baxter, Cindy and Bob Feltzin
respond due to many legal restrictions.
cmenacker@myeloma.org
On Saturday morning, Susie set
Next, Dr. Brian Durie provided
Lisa Paik, Information Officer
an upbeat tone for the meeting with a
an update on the International Myeloma
lpaik@myeloma.org
brief history of the retreats, progress in
Workshop held in Salamanca, Spain.
the management of myeloma, a look at
He was able to place a perspective on
The information presented in Myeloma
Today is not intended to take the place of
new programs, and the role of support
the hot issues in myeloma research as
medical care or the advice of a physician.
groups. She highlighted the availability
well as those areas that appear to be los-
Your doctor should always be consulted
of VELCADETM, the first new drug for
ing favor as additional information
regarding diagnosis and treatment.
2
myeloma in many years, and how IMFers
Please see page 4

---

ASK THE EXPERT:
The Pathogenesis and Treatment of Multiple Myeloma Bone Disease
station have been found to lose signifi-
patient. Some patients have multiple
cant bone mass due to prolonged
myeloma diffusely spread throughout
weightlessness. The first astronaut to
their bone marrow. These patients may
Mars will likely be taking a bisphospho-
not have individually identifiable lesions
nate on the way! One can see that pro-
on X-ray but are instead noted to have
longed bed rest could also induce similar
diffuse osteoporosis (thinning of the
reductions in bone mass.
bone). Other patients will have discrete
If one looks inside the femur,
collections of tumor cells in their bones
the largest bone in your leg, you can see
that result in what looks like holes on X-
a strong outer shell with a scaffolding
ray. One of the problems with multiple
matrix in the middle. The outer portion
myeloma is that the bones do not readily
of the bone is called the bone cortex,
repair these holes even when the multi-
while the center of the bone is called
ple myeloma is controlled. This is
cancellous bone. It is in the center of
because the osteoblasts don't rush in to
Robert A. Vescio, M.D.
Associate Director, Multiple Myeloma/Bone Metastases Program
the large bones of the body where blood
repair these areas of weakness for
Cedars-Sinai Medical Center
cells are produced. This area is called
unknown reasons. It should be remem-
Los Angeles, California
the bone marrow. This is where normal
bered that a lesion on X-ray does not
By Robert A. Vescio, M.D.
plasma cells reside and, consequently,
mean that there is multiple myeloma
where the malignant version (myeloma
still present in this spot. The myeloma
One of the most common symp-
cells) also prefers to grow. The smaller
cells could have been destroyed by treat-
toms that lead patients with multiple
bones of the hands and feet do not have
ment such as radiation but the bone just
myeloma to first seek medical attention
bone marrow; hence patients with mul-
hasn't filled in the weakened area.
is bone pain. This pain is caused by the
tiple myeloma typically do not develop
Fortunately, there are now new
destruction of bone material induced by
fractures or bone lesions in these areas.
treatments for multiple myeloma bone
myeloma cells within the center of the
The cells within the bone mar-
disease which have made skeletal related
bone. The bones can then become weak
row that are responsible for bone remod-
complications such as fractures less com-
and eventually result in small or more
eling are called osteoblasts (the cells
mon. Treatment of the myeloma itself is
substantial fractures most commonly
that produce bone material) and osteo-
one of the most effective ways of con-
within the spine or ribs. Fortunately,
clasts (the cells which dissolve bone). In
trolling further bone breakdown. Often
there are now medications that can limit
patients with multiple myeloma, the
patients at diagnosis will be discovered
this process. In addition, other treat-
osteoclasts are overactive. The myeloma
to have hypercalcemia. With successful
ments such as radiation therapy or new
cells secrete hormones that can stimu-
treatment, the calcium levels often fall,
surgical procedures such as kyphoplasty
late the osteoclasts to break down bone
indicative of less calcium release from
can alleviate or even correct some of
inappropriately. One of these hormones
resorbed bone. As this occurs, the
these complications.
produced by myeloma cells is called
patient's pain often improves as well. It
One might think that there
RANK Ligand. It attaches to a receptor
is likely that much of the pain experi-
would be evolutionary pressure to pro-
called RANK on the surface of the
enced by multiple myeloma patients
duce bones as strong as possible. This is
osteoclast and stimulates its activation.
comes from some of the cytokines and
not the case nor is it in your body's best
In addition, other hormones (also called
inflammation that exists around these
interest. While it is important to have
cytokines) are overproduced in the mul-
nests of tumor cells within the bone
bones strong enough to not break during
tiple myeloma environment such as IL-6
marrow.
normal activities, it is not in one's inter-
and TNF. These cytokines may also indi-
Another important treatment
est to have bones so heavy that limbs
rectly stimulate osteoclast overactivity.
for multiple myeloma directly attacks
become inefficient to move. To accom-
This is why areas of increased bone
the overacting osteoclasts.
plish this balance, the body somehow
breakdown (lesions or lucencies on X-
Bisphosphonates are a class of drug
senses the shocks and stresses transmit-
rays) often occur in the regions where
known to suppress osteoclastic activity.
ted throughout the bones and lays down
myeloma cell proliferation is particularly
The initial studies completed in multi-
new bone matrix material in areas that
prominent. When osteoclastic activity is
ple myeloma used relatively weak agents
are structurally stressed, and dissolves
severe, the bone in that area can
such as etidronate and clodronate. In
away material in areas which are not
become weak and calcium (present
the Canadian study involving
needed. This is why it is very important
within the bone matrix) comes out of
etidronate, 166 patients were random-
for patients with multiple myeloma to
the bone and into the bloodstream.
ized to etidronate (5 mg/kg) or placebo
keep active. The stresses incurred by
That is why multiple myeloma patients
in addition to primary chemotherapy
even seemingly non-strenuous activities
can have hypercalcemia (high calcium
with melphalan and prednisone. No sig-
such as walking, can keep the bones of
blood levels) when their disease is not
nificant difference in clinically mean-
the legs and spine strong. As an exam-
well controlled. The pattern of bone
ple, astronauts returning from the space
involvement differs from patient to
Please see page 8
3

---

SUPPORT GROUP RETREAT ­ continued
Greg Brozeit presented an interesting
INTERNATIONAL MYELOMA FOUNDATION
discussion on "Cancer and Public
is compiled. Several very hopeful con-
Policy: The Importance of Advocacy".
SCIENTIFIC ADVISORY BOARD
cepts were presented that we will likely
His remarks were punctuated with a
hear more about in the near future.
variety of experiences in his years work-
Chairman Robert A. Kyle, USA
The first afternoon session
ing in the offices and hallways of
Raymond Alexanian, USA
focused on loss and grief issues facing
Washington. He pointed out the value
Kenneth C. Anderson, USA
support groups. Since most myeloma
of advocacy, particularly if done at the
Hervé Avet-Loiseau, FRANCE
support groups do not have professional
right time and in support of a visible
Bart Barlogie, USA
facilitators, it can be difficult to handle
project. A good share of the viability of
Régis Bataille, FRANCE
the loss of fellow members. Joanna
a project lies in the eyes of what con-
Meral Beksac, TURKEY
Parker, LPC, Bereavement Services
gressional representatives and senators
William Bensinger, USA
Coordinator, Duke University, led a dis-
feel they can support. His best example
James R. Berenson, USA
cussion helping understand the various
of this is the IMF participation with
Daniel Bergsagel, CANADA
kinds of grief and loss. She assisted the
more than forty groups in the One Voice
Leif Bergsagel, USA
group in defining grief and the ways it
Against Cancer coalition.
Joan Bladé, SPAIN
might be expressed. She explained
Our retreat ended late Sunday
Mario Boccadoro, ITALY
`Anticipatory Grief', a type that occurs
morning after an exceptionally well-pre-
Y.C. Chen, REPUBLIC OF CHINA
when individuals focus on future fears,
pared and presented discussion on the
J. Anthony Child, ENGLAND
i.e., debilitation, loss of ambulation,
development of VELCADETM by
Raymond L. Comenzo, USA
economic problems, etc. She stressed
Millennium Pharmaceuticals Medical
Franco Dammacco, ITALY
the importance of healthy anticipatory
Director, Dr. Beth Trehu. Her many years
Meletios A. Dimopoulos, GREECE
mourning by outlining the factors neces-
of experience as a practicing oncologist
Brian G.M. Durie, USA
sary for it to be a healthy experience.
nicely complemented her new role.
Dorotea Fantl, ARGENTINA
Joanna offered some coping ideas for
I am now at the point of gather-
Rafael Fonseca, USA
support groups at times of loss.
ing our thoughts from the retreat, think-
Ian Franklin, SCOTLAND
Jon Seskevich RN, BSN, BA,
ing about applications of what we shared
Gösta Gahrton, SWEDEN
CHTP Nurse Clinician, Duke University
on return home, and looking to next
Morie A. Gertz, USA
Health System focused on, "The Vital
year with great anticipation for the fifth
John Gibson, AUSTRALIA
Quartet: Safe, Sane Complementary
annual IMF Support Group Leader
Hartmut Goldschmidt, GERMANY
Therapies for Inquiring Patients". Jon
Retreat. I hope that more multiple
Jean-Luc Harousseau, FRANCE
focused on the negative impacts of stress
myeloma support group leaders will plan
Vania Hungria, BRAZIL
and identified a variety of stress manage-
to join us in 2004. Special thanks to
Douglas Joshua, AUSTRALIA
ment techniques. Stress management
Nancy Baxter and the IMF staff who
Tadamitsu Kishimoto, JAPAN
gains increased importance when we
worked on arrangements for this retreat.
Henk M. Lokhorst, THE NETHERLANDS
realized that 50% - 80% of all diseases
We are grateful to the IMF for this help-
Heinz Ludwig, AUSTRIA
are stress related. A ten-minute relax-
ful and generous support. S
Ian MacLennan, ENGLAND
ation was said to have the impact of a
James S. Malpas, ENGLAND
half-hour nap! You can access much of
Note: Chuck Koval, a co-leader of the
Jayesh Mehta, USA
what Jon presented by visiting his web-
Wisconsin Multiple Myeloma Support
Håkan Mellstedt, SWEDEN
site at www.managestressnow.com.
Group, can be reached via email at
Angelina Rodriguez Morales, VENEZUELA
The pre-dinner cocktail recep-
cfkoval@wisc.edu. For a list of multiple
Gareth Morgan, ENGLAND
tion provided a nice transition between
myeloma support groups throughout the
Gregory R. Mundy, USA
the work of the day and the anticipation
U.S. and around the world, please con-
Amara Nouel, VENEZUELA
of a relaxing dinner. Following dinner,
tact the IMF.
Martin M. Oken, USA
Linda Pilarski, CANADA
Raymond Powles, ENGLAND
David Roodman, USA
Jesus San Miguel, SPAIN
Kazuyuki Shimizu, JAPAN
Seema Singhal, USA
Bhawna Sirohi, ENGLAND
Alan Solomon, USA
Pieter Sonneveld, THE NETHERLANDS
Guido J. Tricot, USA
Benjamin Van Camp, BELGIUM
Brian Van Ness, USA
Jan Westin, SWEDEN
4

---

THE GOOD, THE BAD, AND THE UGLY OF CANCER PUBLIC POLICY
By Greg Brozeit
Eschenbach's initiative goal should focus
Health. Additionally, access to and
our efforts in ways we find it difficult to
funding for cancer treatment took a hard
Excuse me if I seem to exhibit a
imagine. But it can be achieved if we
blow in the proposed Medicare reform
bit of schizophrenia. I'm not sure
make the national commitment and sac-
bills passed by the House and Senate.
whether to be optimistic or pessimistic.
rifices needed to get there from here.
After the relatively giddy 5-year
On the one hand, the state of the sci-
The 2015 initiative may be the
process of doubling NIH budget--an
ence of cancer research and patient care
most ambitious scientific goal of our life-
average 15% per year--President Bush
is the brightest it has ever been. On the
times. Imagine a world without death
recommended slightly more than a 2%
other hand, the politics and policy
and suffering due to cancer. If you're
increase for fiscal year 2004. This small
impacting the cancer world seem to be
reading this, you know how audacious a
increase barely keeps pace with the rate
moving in the exact opposite direction.
goal that is. You've seen far too much of
of inflation and translates into a flat
So what are we to believe?
cancer and its consequences to take this
funding scenario at best. Within those
More importantly, what will we do?
seriously. It might even seem cruel.
amounts, the request for NCI totaled just
But the truth is that it is within
$170 million for a total of $4.77 billion.
THE GOOD NEWS
our grasp. The investment our nation
In late June 2003, the fate of the
Last week I attended the
has made into cancer research since
funding was sealed when the congres-
National Dialogue on Cancer (NDC)
President Nixon signed the National
sional appropriations committees largely
meeting on behalf of IMF's Susie Novis.
Cancer Act into law in 1971 is now
followed the funding recommendations
Susie is the only representative of the
beginning to pay off in remarkable ways.
for medical and cancer research laid out
myeloma community who is a member
In the past two years we have seen the
in the president's fiscal year 2004 budget.
of the NDC. Chaired by former
approval of the first three molecularly
For NCI each chamber recommended
President George Bush and his wife
target drugs. As many as 300 more are
the same amount as the president.
Barbara, the NDC is a unique entity
currently in development. Over the
These recommendations were
that brings together members of the pri-
course of the next decade, the science
approved despite the fact that NCI only
vate, public, and non-profit sectors of
may drive this number well past 1,000.
funds 28% of its approved grants. In
the cancer community for biannual
While we have had steady
other words, 72% of the approved, peer-
meetings to with the goal of significantly
growth in our understanding about how
reviewed grants NCI reviews never get
reducing cancer incidence and mortality
the mechanisms of cancer work, we will
funded. This perverse situation will
within the decade.
now need exponential growth. That
only get worse under the fiscal year 2004
As a member of the NDC
will mean a need for more researchers,
funding recommendations.
Cancer Research Team, I have learned
more public and private investment,
The news gets worse. In the
first hand about the real potential for
more participation of patients in cancer
recently passed Medicare reform bills
significant advances in cancer research
trials, more engagement of policy makers
funding for cancer treatment took a big
through targeted therapies of genomic
and citizens in the decision-making
hit. According to an analysis by the
and proteomic medicine development. I
process, and, most importantly, more
American Society for Hematology, "...it
have learned that we may soon see a
public understanding of the cost of can-
is projected that the House and Senate
future free of chemotherapy drugs.
cer and why it matters that cancer
proposals would reduce payment for can-
Drugs that target cancers at their genetic
should be our nation's most important
cer drugs by about $700 million per year,
and molecular roots will replace them. I
health care priority.
but would add back only about $190
have seen glimpses of future that will
Whether or not we achieve the
million in improved reimbursement for
put chemotherapy into the outmoded
goals of the 2015 initiative by the year
the administration codes. Thus, a net
category of the medicinal use of leeches.
2015, one thing is clear: we can realisti-
reduction in excess of $500 million per
At the last NDC meeting, NDC
cally anticipate a world in which our
year is under consideration for
founding member and vice chair
children and our children's children will
chemotherapy services."
Andrew von Eschenbach, the director of
not suffer and die because of cancer.
So, while the science and treat-
the National Cancer Institute (NCI),
Let's not quibble about dates, but let's
ment for cancer has never looked better,
unveiled his 2015 initiative. Its ambi-
use them as incentives to speed up the
our policy makers have responded by
tious goal is the elimination of suffering
achievement of the goals.
limiting the funding stream to realize
and death due to cancer by the year
the opportunity. To exacerbate the
2015. This may be audacious, but it is
THE BAD NEWS
problem, they have recommended a
not nearly as unthinkable as it was just
Juxtaposing the grand vision of
reduction in the vital reimbursements
five years ago. And just like President
the 2015 initiative, Congress and the
needed to ensure minimal access to
Kennedy's challenge to the nation in
president have decided to dramatically
quality cancer care for Medicare recipi-
1962 that we would be on the moon by
reduce their previous commitments of
ents. If enacted, these proposals will
the end of the decade, Dr. von
funding for the National Institutes of
5
Please see page 10

---

IMF CALENDAR
SCIENTIFIC ADVISOR PROFILE:
The International Myeloma Foundation is pleased to welc
August 2, 2003
Robert A. Kyle Lifetime Achievement Award Dinner
Rochester, MN
Rafael Fonseca, M.D.
program, and a senior member of the
August 2, 2003
Mayo Clinic
Myeloma Research Group at Royal
Steve Malone Golf Tournament
Rochester, Minnesota
Prince Alfred Hospital in Sydney. He is
Omaha, NE
U.S.A.
also associate professor in medicine at
August 10-17, 2003
the University of Sydney.
Myeloma Awareness Week
Dr. Fonseca is Associate
After graduating in medicine at
Nationwide
Professor in Medicine, Mayo Graduate
the University of Sydney, Dr. Gibson
August 15-16, 2003
School of Medicine and Consultant,
worked at Sydney Hospital before com-
IMF Patient & Family Seminar
Department of Hematology and Internal
mencing advanced training in hematol-
Atlanta, Georgia
Medicine, Mayo Clinic. Dr. Fonseca
ogy at Royal Prince Alfred Hospital. He
August 16, 2003
completed his Medical School educa-
gained fellowships of both the Royal
"Mile High March for Myeloma" MM Fundraiser
tion in 1991 at Universidad Anahuac
Australasian College of Physicians as
Lake Arrowhead, CA
School of Medicine, Mexico City,
well as the Royal College of Pathologists
August 23, 2003
Mexico.
of Australasia and subsequently a Ph.D.
Ralph Ferrizzi Memorial Golf Tournament
Dr. Fonseca is a member of
from the University of Sydney. Since
Allentown, PA
American College of Physicians,
1986, he has been a senior member of
August 25, 2003
American Society of Hematology,
the Institute of Haematology at RPAH.
Corporate Cup Challenge Golf Tournament
American Society of Clinical Oncology,
In 1995 he also spent some time as a vis-
Naperville, IL
Mexican Society of Internal Medicine,
iting scientist at the Fred Hutchinson
September 6, 2003
North Central Cancer Treatment
Cancer Research Centre in Seattle.
IMF (UK) Patient & Family Seminar
Cardiff, WALES
Group, Eastern Cooperative Oncology
Dr. Gibson's main research
Group, and a Fellow of International
interests are myeloma, as well as the
September 12, 2003
Society of
therapy of hema-
IMF Patient & Family Seminar
Torino, ITALY
Hematology.
tological malig-
A mem-
nancies in gener-
September 19, 2003
ber of the
al, in particular
IMF Patient & Family Seminar
Paris, FRANCE
Dysproteinemia
the role of stem
Clinical Group,
cell transplanta-
September 27-28, 2003
Dr. Fonseca has
tion. He is a
IMF Patient & Family Seminar
Heidelberg, GERMANY
developed an
member of the
expertise in the
joint myeloma
October 1-5, 2003
SWOG Group Meeting
management of
subcommittee of
Seattle, WA
the plasma cell
the International
disorders. His
Bone Marrow
October 4, 2003
Ribbon of Hope - Making a World of Difference
clinical practice
Rafael Fonseca, M.D.
Transplantation
John Gibson, M.D.
Anniversary Gala
is primarily composed of patients with
Registry and Autologous Blood and
Seattle, WA
multiple myeloma, primary amyloidosis,
Marrow Transplantation Registry and
October 17-18, 2003
monoclonal gammopathy of undeter-
the representative of the Australian
IMF Patient & Family Seminar
mined significance and Waldenstrom's
Leukaemia and Lymphoma Group on
Philadelphia, PA
the International Myeloma Trialists'
macroglobulinemia.
November 1, 2003
Group. Non-myeloma interests include
In the laboratory, Dr. Fonseca
IMF Patient & Family Seminar
undergraduate and postgraduate teach-
concentrates on the genetic and cytoge-
JAPAN
ing as well as patient education, having
netic nature of the clonal cells of the
November 7-8, 2003
been a contributor to the IMF Patient &
plasma cell disorders.
IMF Patient & Family Seminar
Family Seminars held in Australia.
Dallas, TX
The RPAH Myeloma Research
John Gibson, M.D., Ph.D.
November 15-17, 2003
Group has an active interest in the mol-
ECOG Group Meeting
Royal Prince Alfred Hospital
ecular genetics of myeloma as well as
Miami, FL
Camperdown, NSW
myeloma tumor immunology and the
December 5-9, 2003
Australia
potential application of immune based
ASH Annual Meeting
therapies such as vaccination. In addi-
San Diego, CA
Dr. Gibson is deputy director of
tion, active clinical research programs
For more information, please visit
the Institute of Haematology, head of
include the investigation of new
www.myeloma.org or call (800) 452-CURE.
the blood and marrow transplantation
approaches to primary therapy,
6

---

Meet New Members of the IMF Scientific Advisory Board
ome Drs. Fonseca, Gibson, Shimizu, and Westin to its distinguished Board of Scientific Advisors.
reduced intensity allogeneic transplants,
of Medicine in 1972 and completed his
has put special focus on quality of life-
management of advanced disease and
clinical immunology fellowship at
issues and health economics and includ-
early detection of skeletal disease. It is
Memorial Sloan-Kettering Cancer
ed these aspects in all later studies
one of the co-ordinating centres for the
Center in 1977.
During the years, Dr. Westin
Australian Leukaemia and Lymphoma
held a number of clinical and manage-
Group myeloma trials.
ment positions in Gothenburg (Head of
Jan Westin, M.D., Ph.D.
The RPAH Myeloma Research
Hematology Section, Östra and
University Hospital
Group is also the proud host of the 10th
Sahlgrenska Hospitals; Medical Director
Lund, Sweden
International Myeloma Workshop,
Östra Hospital; Medical Advisor to the
which will be held in Sydney in April
Health Care Administration of the City
Dr. Westin was educated and
2005. Dr. Gibson is co-vice-president of
of Göteborg) and Lund (Head of
began his career in medicine at the
the organising committee and a member
Department of Internal Medicine;
University of Göteborg, Sweden. From
of the national planning group for the
Medical Advisor to the Region Skåne
1990, he has practiced at the University
scientific program.
County Council, especially in R&D
of Lund, Sweden.
issues; Deputy Director Stem Cell
Dr. Westin started with scientif-
Center, Faculty of Medicine, Lund
Kazuyuki Shimizu, M.D.
ic interest mainly in myeloproliferative
University)
Nagoya City Higashi General Hospital
disorders, cytogenetics, and other clini-
Currently, Dr. Westin is Clinical
Wakamizu, Chikusa-Ku, Nagoya
cal aspects. He later switched interest to
Hematologist Assistant Professor in
Japan
plasma cell disorders and specially mul-
Internal Medicine/Hematology at
tiple myeloma. Since 1985, he has
University Hospital in Lund, Sweden.
Dr. Shimizu is a Vice President
mainly published papers in this field.
His main interests are:
at Nagoya City Higashi General
In 1987, started the Nordic
· to further strengthen the Nordic
Hospital in
Myeloma Study
Myeloma Study Group by running well-
Nagoya, Japan, a
Group (NMSG),
designed, population-based clinical tri-
visiting professor
as a network of
als with high accrual rate, giving gener-
at Nagoya
clinicians and
alizable results; to stimulate spin-off pro-
University
scientists in the
jects using the material from the main
School of
Scandinavian
studies; to elucidate the role of patient
Medicine, the
countries, with
information and patient participation in
President of the
the primary goal
clinical decisions.
Nagoya Myeloma
to carry out large
· to expand the Nordic network into
Cooperative
population-based
a European multinational Network of
Study Group,
phase III clinical
Excellence.
and is on the
trials. The scope
Kazuyuki Shimizu, M.D.
Jan Westin, M.D., Ph.D.
· to stimulate and support younger
Board of
of the group has
colleagues to get involved in the clinical
Directors for the Japan Society of
widened to include other types of stud-
and experimental research focusing on
Hematology and for the Japan Society of
ies, a multitude of spin-off projects,
plasma cell disorders, and in the clinical
Clinical Hematology, a member of
development of common Nordic
care of myeloma patients.
Myeloma Trialists' Collaborative Group
Guidelines for diagnosis and treatment
of MRC, UK, the representative of
of multiple myeloma (1995, revised edi-
Japan for the International Myeloma
tion 2002) and patient education
The IMF is fortunate to have
Working Group of the IMF, and on the
efforts. Today, 17 university clinics and
the support and cooperation of its dis-
Advisory Boards for the IMF (Japan).
95 county hospital clinics in Denmark,
tinguished Board of Scientific Advisors,
Dr. Shimizu is the President of
Norway and Sweden are associated with
comprised of 54 world recognized
the 29th annual meeting of the Japan
NMSG. The group has so far initiated
experts in the field of multiple myeloma.
Myeloma Study Group, to be held in
12 study protocols. Three randomized
The IMF Scientific Advisory Board pro-
Nagoya in 2004. Dr. Shimizu elaborated
studies are at present running (compari-
vides valuable counsel and assistance to
"Guidebook" for patients with myeloma
son of two doses of IV pamidronate,
the IMF in its service of the myeloma
in Japan and has been playing a central
melphalan-prednisone vs. melphalan-
community through education, research,
role in the establishment of "Guideline
prednisone-thalidomide to patients > 65
support, and advocacy. We look forward
for multiple myeloma in Japan."
yrs, VAD vs cyclophosphamide-dexam-
to introducing you to other IMF
Dr. Shimizu received his M.D.
ethasone as induction before high-dose
Scientific Advisors in future issues
degree from Nagoya University School
therapy of patients < 65 yrs). The group
of Myeloma Today.
7

---

ASK THE EXPERT ­ continued
with more advanced disease was 21
preventative treatment. Although never
months if they received pamidronate vs.
definitively proven in a long-term study,
14 months for those on the placebo arm
most patients with multiple myeloma
ingful events such as new fractures,
(p=0.47).
and bone disease should receive these
hypercalcemic episodes and bone pain
After this study was completed
medications indefinitely with careful
were noted between the two arms.
most patients with bony lesions and
monitoring of kidney function. In addi-
Clodronate is an oral agent, available in
multiple myeloma began treatment with
tion, it has never been proven that
Canada and Europe, which has shown
Aredia. Recently, a newer more potent
patients with earlier stages of multiple
some beneficial effects in multiple
agent, zoledronic acid (Zometa) has
myeloma require treatment with a bis-
myeloma. Treated patients developed
become available. This drug was noted
phosphonate. My practice, however, is
less hypercalcemia and non-vertebral
in animal models to be 100-800 times as
to treat most patients with these drugs
fractures. However, back pain and poor
potent on a mg per mg basis. This led to
since they work best as preventative
performance status were not significant-
a trial comparing Aredia to Zometa in
treatment, and because there is also lab-
ly different between the two groups
the treatment of hypercalcemia. Zometa
oratory evidence that these drugs can
except at one time point (24 months)
was approved for use because a dose of 4
kill myeloma cells in the culture dish.
and the proportion of patients requiring
or 8 mg corrected hypercalcemia ~90%
Furthermore, reducing osteoclast num-
radiotherapy was similar between the
of the time vs. only 70% of the time with
bers and activity by bisphosphonate
two arms. Similar studies suggest that
90 mg of Aredia. Subsequently, a large
administration may indirectly slow
oral clodronate has a mild to modest
randomized trial was performed compar-
myeloma cell growth since the osteo-
beneficial effect on bone pain and frac-
ing Zometa to Aredia in patients with
clast is the greatest producer of IL-6 in
ture development in multiple myeloma.
multiple myeloma and breast cancer.
the body and IL-6 is the primary growth
It should be noted that Fosamax (alen-
This was done to see if Zometa was at
factor for the myeloma cell.
dronate) and Actonel (risedronate) oral
least as effective as Aredia at preventing
Several new agents are under
bisphosphonates useful in the treatment
the bony complications that these
development, the most promising being
of osteoporosis, have not been studied in
patients develop. The final results
a synthetic homologue to the naturally
multiple myeloma. The doses of drug
demonstrated that the zoledronic acid
occurring osteoclast inhibitor (OPG).
needed to impede bone breakdown in
was at least as effective at preventing
This drug AMG-162 has been given to
multiple myeloma is significantly higher
bony complications as Aredia in multi-
patients with multiple myeloma and
than that needed for osteoporosis treat-
ple myeloma and slightly more effective
appears to be safe and inhibit bone
ment. This is demonstrated by the fact
than Aredia for patients with breast cancer.
resorption at least comparable to that
that a recent study showed a single 5mg
The bisphosphonates are rela-
achieved with pamidronate.
dose of Zometa per year may be suffi-
tively safe drugs. They can cause a flu-
Comparative phase III trials are being
cient treatment for osteoporosis.
like illness and even exacerbate bone
formulated right now and should start
The first bisphosphonate
pain the first couple of times they are
shortly.
demonstrated to reduce the bony com-
received. All bisphosphonates can cause
Finally, a new procedure has
plications in multiple myeloma patients
kidney problems (usually reversible) if
been developed which can help patients
was pamidronate (Aredia). A random-
given too quickly intravenously. In the
who have already developed fractures
ized trial was performed in which 377
above trial, Zometa was given at two dif-
within the spine causing chronic pain.
patients with Durie-Salmon Stage III
ferent doses (8 mg and 4 mg) each over
Unlike fractures elsewhere in the body,
multiple myeloma received either
5 minutes (compared to the 120 minute
once a vertebrae collapses it will never
Aredia or placebo (salt water infusion).
infusion time for Aredia). It was then
regain its normal height and shape.
The proportion of myeloma patients
discovered that at this rapid infusion
Many times, this is not a major problem.
having a skeletal complication (fracture,
time, some patients receiving Zometa
Patients will lose some height and may
need for radiation, hypercalcemia, spinal
developed kidney damage particularly
lean forward (due to kyphosis of the
cord compression) was 41% in patients
when the higher dose was used. Because
spine) but eventually, the pain will
receiving placebo but only 24% in
of this, all patients randomized to
resolve. Unfortunately, some patients
pamidronate-treated patients (p<0.001).
receive Zometa, received the lower 4mg
will develop chronic pain due to the
In addition, the number of skeletal
dose and over a longer period of time
non-healing vertebral fracture. If the
events/yr was cut approximately in half
(15 minutes). After this modification,
offending vertebrae can be identified
in those patients treated with
the incidence of kidney problems with
and the collapse is not too severe, a bal-
pamidronate (p<0.001). The patients
Zometa matched that seen for patients
loon can be inflated into the vertebrae
randomized to receive pamidronate also
receiving Aredia. At the present time,
and filled with cement. This procedure
had significant decreases in bone pain,
either of these drugs (Aredia or Zometa)
is called a kyphoplasty and is being
and, in contrast to patients receiving the
can be used to prevent bone problems.
done by more and more orthopaedists.
placebo, showed no deterioration in per-
Zometa is more convenient since it
Although not always successful, the
formance status and quality of life at the
takes only 15 minutes to give versus 120
procedure itself is relatively safe requir-
end of nine months. These benefits con-
minutes for Aredia. Since it is likely that
ing only an overnight stay in the hospi-
tinued for the remaining twelve months
these drugs prevent bone disease from
tal and can often achieve instant pain
of the study. In fact, although overall
getting worse (by impeding osteoclasts),
relief in suffering patients with vertebral
survival was not significantly different
but do not necessarily reverse damage
compression fractures of the lower
between the two treatment groups, the
already done, these drugs work best as a
spine.
median survival time for the patients
S
8

---

IMFER PROFILE: Terry Herman Shares Her Story
biopsy. I said, "I am going to humor you.
crying. My in-law children are crying!"
I'll give you some blood and all the urine
That's when we all laughed.
you want. You can even take x-rays. But
A cancer diagnosis is very hard
as far as doing a biopsy, that's out of the
to come to terms with. You really don't
question." When the hematologist called
know where to turn. It would be very
me with the test results, I happened to
difficult to have myeloma and to have to
have been playing around on my comput-
deal with it on your own. We all need
er. He said, "You definitely have to come
help to get through this.
in for the bone marrow biopsy." I said,
"What are you looking for?" He said, "I
MT: How do you cope?
am not looking for anything. You have
TH: I have a great support system. I
myeloma." So of course I type in the
have a husband who's been just unbe-
word "myeloma" into the computer and
lievable. His mother was sick for many
the search comes back "cancer of the
years and I should have known then, as I
plasma cell." I told the doctor that he
watched him take care of her, that I was
Terry and Howie Herman
had the wrong person. This couldn't be!
going to be so lucky some day, that he
Yes, I was anemic and I had a benign pro-
was going to be there to take care of me.
Myeloma Today: Please tell us a little
tein in my blood, but how can that be
And he does. He makes sure I go to the
about your life before myeloma.
malignant? He tried to explain it to me
doctor, and he comes with me. He's
Terry Herman: I had an average life. I
but at that moment I was so stunned that
never missed an appointment. My
am married. I have a son who is going
there was no way I could deal with this
daughter has also gone for doctor visits
to be 33 and a daughter who is going to
kind of information. This is why, in my
with me. I can email my hematologist
be 31. Both of my children have chil-
opinion, you always need to bring some-
with questions and get an answer from
dren of their own. I have a business ­ I
one with you when you go see a doctor.
him within hours! We discuss my blood
own a travel agency with a partner. I've
It's important to have someone else
levels every month. He is trying very
always thought I was extremely healthy.
there to listen to the information. A
hard to keep me stable. And my family
I exercised, took all the right vitamins
patient really can't process it all.
doctor still calls me all the time just to
and antioxidants, and ate all the right
see how I am feeling. I have two won-
foods. I used to laugh because my hus-
MT: What did you do?
derful doctors who work hand-in-hand.
band Howie was always running to the
TH: I called my husband. I kept saying,
A couple of months ago, I
doctor, always thinking that something
"I don't understand. The doctor is telling
attended to my first support group meet-
was wrong with him. I used to say, "All
me that I have cancer. He must have
ing. I don't think that I could have
you have to do is take care of yourself!"
thought he was talking to somebody else.
gone earlier because I just wasn't ready.
Or maybe he mixed up the charts..." I
But now I find it very informative.
MT: When were you diagnosed?
couldn't get it through my head. My
And I have found out that my
TH: In April, 2002, I had a stint in the
husband told me to call our family doc-
friends are true friends, not just acquain-
emergency room because of some pain in
tor. I received the diagnosis on Friday,
tances. They are there for me and that
my side. It turned out to be irritable
October 15, 2002. Our family doctor was
is so important. They call me to before
bowel syndrome and acid reflux. But the
on vacation but called me back and
my treatments, they call after. They
blood tests revealed a high protein level.
spent at least 45 minutes trying to calm
offer to take me to my doctor appoint-
Of course, at the time I didn't understand
me down. I spent the whole weekend
ments, to sit with me during treatments.
what that meant. I had an endoscopy
crying. I though I was a healthy human
They browse the Internet doing research
and a colonoscopy. Then I got pneumo-
being. This was a very rude awakening.
­ when VELCADETM received its FDA
nia, followed by bronchitis. My family
I gathered my family. I said,
approval, I received so many calls from
doctor had been monitoring me very
"Listen, I just want to tell you all that I
friends making sure that I had all the
closely ever since the elevated blood pro-
am going to be here for a while and I am
information. It's just unbelievable. I
tein level was discovered and he told me
going to take very good care of myself. I
feel so loved and protected by everybody.
that as soon as I got better, I needed to go
don't want you to treat me special. I
see a hematologist. He was hoping I had
want to be who I've always been. I want
MT: How did you learn about the IMF?
MGUS and had discussed it with me but
to be your mother. I want to be there for
TH: I found the IMF on the web. I
I just wasn't paying attention. I didn't
you. I don't want you to think that you
ordered the free InfoPack and signed up
even bother to look up MGUS on the
can't talk to me because I'm going to die
for this newsletter. Your educational
Web so I never realized that this could be
next week. That's not going to happen.
materials have been most informative.
something serious. After all, I felt healthy!
My disease is in the early stages and
They help me to ask the right questions
But my family doctor just wouldn't let
every day the doctors are coming out
and communicate better with my doctor
the matter drop. When I got over the
with something new." And I am looking
and that's very important. I think that
bronchitis at the end of August, he
at my kids and they are sitting there stone-
people need help learning how to com-
insisted that I see a hematologist.
faced, and my son-in-law and daughter-
municate. They need guidance. These
The hematologist wanted to do
in-law are crying. I said, "What's wrong
are things I never needed before
some blood work, a 24-hour urine col-
with this picture? My children aren't
9
lection, a bone scan, and a bone marrow
Please see page 11

---

will be the legislative metaphor of moving
CANCER PUBLIC POLICY ­ continued
have the freedom to make decisions to
around the deck chairs on the Titanic...But
lessen the need for winners and losers.
have disastrous consequences for all can-
instead of "guns or butter" the mantra for advo-
We have to work the appropria-
cates may be "tax cuts or cancer research" or
cer patients, oncologists, and
tions process with messages like those of
"tax cuts or education funding."
researchers.
On the other side of the discussion,
the One Voice Against Cancer coalition
All this is happening at the time
there would be no guarantee that research fund-
to increase funding for NIH, NCI, and
of greatest scientific opportunity to make
ing would automatically go up if tax cuts were
the Centers for Disease Control and
cancer a manageable, treatable, chronic
defeated and the federal funding stream
Prevention cancer programs. And we
condition that would eliminate suffering
remained uninterrupted. Those decisions would
must do so in concerted voices with all
again be left up to the various appropriations
and death due to the disease. Where is
the members of the cancer advocacy
subcommittees and there are no guarantees that
George Orwell when you need him?
link tax income with funding for programs...
community.
But we should expect winners and
I urge you to watch for the
THE UGLY TRUTH
losers in the appropriations process. Although
action alerts in the Myeloma Minute and
Cancer is the number one killer
the NIH part of the equation looks promising for
to contact me if you have questions or
cancer research advocates this year, the other
of Americans between the ages of 25
advice. I urge you to engage your friends
parts do not look as promising. The outlook for
and 64, i.e., the most productive years of
next few years is even more nebulous, especially
and family members around the country.
our lives. Every day 1,500 Americans
for NIH.
We must make Congress and
die of cancer and more than 3,000 are
And remember to connect the dots.
the administration to understand that
diagnosed.
At least then it is easier to explain the final
1.3 million Americans will be diagnosed
Despite these facts, Congress and
results. And remember that it is more likely to
with some form of cancer this year. We
be on the losing side of the appropriations
the president have decided to treat can-
must make them understand that more
process when the income of the federal govern-
cer as a deflated political football. What
ment is constricted by tax cuts.
than 570,000 Americans will die of
we are witnessing are the consequences
Another reason is the fragment-
some form of cancer this year.
of the perception that medical research
ed and quiet nature of the cancer con-
These are not numbers that can
was the big winner over the past five
stituency. We still tend to focus too
be relegated to a political game of win-
years and now it is some other constituen-
much on "our cancer" rather than cham-
ners and losers. The stakes are too high
cy's turn. Why do we have to have a
pion the big picture of NIH and NCI
and the science is too promising.
funding world of winners and losers?
research. And we expect that the sheer
In discussing the context of the
I would argue that there are two
logic of the cancer arguments will prevail.
2015 initiative, NCI Director von
primary reasons. First, winners and
The reality, however, is differ-
Eschenbach has brilliantly put the
losers in the appropriations process is a
ent. In one discussion I had with a
nature of the challenge facing us into
direct consequence of the tax cuts signed
senior congressional staffer this year, she
historical context. At the turn of the
into law over the past two years. When
candidly admitted that she had heard
20th century, the fundamental question of
you take $1 billion out of the govern-
much more from education advocates
science was the nature of matter. At the
ment's resources, you have to begin to
than from cancer advocates. And when
turn of the 21st century, the fundamental
expect serious priority adjustments as
she did hear from cancer advocates, it
question of science is the nature of life.
Congress decides how to allocate money.
was usually in support of issues and fund-
Looking back, it took science 50
As I wrote in the August 2002
ing related to "their" cancer. Since
years to move our understanding of mat-
issue of Myeloma Today:
Congress does not appropriate by specif-
ter from the horse-less carriage to the
What was needed...was an under-
ic disease category, this segmenting of
advent of supersonic flight. Moving for-
standing and appreciation of how the political
cancer types further undermined the
ward, the development of molecularly
and appropriations processes were dependent on
overall message. It should be no sur-
targeted drugs that will eliminate suffer-
each other. How, for example, could the appro-
priations committees begin to fulfill the wishes of
prise, then, that education funding will
ing and death due to cancer is in, if you
the competing funding constituencies if tax cuts
be a big winner in this year's appropria-
will, the horse-less carriage phase. We
diminished federal resources by $600 billion?
tions cycle.
cannot wait 50 years to realize its
Under these conditions, no constituen-
In order to reverse this trend, all
promise. There are too many lives at
cy should expect to fulfill their wish lists, or, in a
cancer advocates must become more
stake, especially with the aging of the
more likely scenario, the future of appropria-
sophisticated and consistently vocal.
baby boomer generation.
tions would translate into a process of perceived
winners one year becoming losers in the next...
Beginning now, we should all make our
We can only realize the 2015
That might translate into education
concerns about cancer research funding
initiative if our policy makers under-
programs not being funded at the levels promised
and potential Medicare cutbacks known.
stand its implications. It is up to you
in previous years. It also may translate in
We have to begin the process for
and all of us to make sure they get the
reductions or stagnant funding levels for other
next year's appropriations cycle now.
message. S
health programs...
And in boom-and-bust funding cycle
We have to become engaged in the bud-
scenarios, it may mean that next year's medical
get debate that follows the president's
Note: To contact Greg Brozeit, please
research funding figure will barely rise while
State-of-the-Union address to ensure
email him at greg.brozeit@sbcglobal.net
other programs, the perceived losers of the cur-
that Congress allocates enough money
or call (330) 865-0046.
rent cycle, will experience greater increases. It
for the appropriations subcommittees to
10

---

TERRY HERMAN ­ continued
years ­ have donated to this foundation.
took out my address book and went
Also, for years I have supported the
through it from one end of the book to
because I had never been sick before the
American Cancer Society ­ my mother
the other and sent letters to everyone I
myeloma. By the time a social worker
had breast cancer, as have several close
knew. And every night I would come
came up to me in the hospital to ask if
friends. And my husband and I donate
home and find messages on my answer-
there was something I needed, I had
to several charities that my neighbors
ing machine from people saying that
already had a lot of help and informa-
are involved with. So when I learned
they wanted to participate. I even heard
tion both from my doctor and the IMF.
about the MFTC campaign, I thought
from people who did not receive my let-
I had gone through every single page of
that if I can donate to other causes, why
ters but had heard about them from oth-
the literature I received from the IMF. I
shouldn't the people I know donate to a
ers. Everyone was offering to contribute.
felt that I knew what was going on and
cause that's so important to me?
A company I worked for 16 years ago
had a better view of where I stood. Even
sent in a check for $500! I was over-
now, once every couple of months I still
MT: How did you proceed?
whelmed that they should think enough
take out my health folder and re-read all
TH: I sent in my order form to the IMF.
of me to contribute to the IMF. The
the books because at each stage I absorb
The following week, I received a packet
response has been unbelievable. I am
different information, even from reading
in the mail that contained hints on how
overwhelmed with phone calls and the
the same text. As I've progressed since
to write a letter. So I wrote a letter and
love and the concern and the offers of
the diagnosis, I have been able to absorb
brought it home to my husband. He
help. I know that these people will be
more and more information.
thought the letter was very good but I
there for me forever.
was concerned that I was asking for too
Gradually, I am finding it easier
MT: Why did you decide to participate
much. I don't like to put people on the
to cope with my diagnosis. I've come to
in the IMF Mail For The Cure (MFTC)
spot. He pointed out that the IMF does
understand that my health is in my hands,
campaign?
not disclose the amount of an individual
that I need to take it seriously, and be
TH: For years, I have been involved
donation so contributors can choose to
prepared for whatever comes at me down
with a number of different causes. I lost
give any amount they wish. Even if they
the line. I feel so lucky that everyone is
a very dear friend on 9/11. His wife
send in just $5... that's $5 more than
there for me. I don't know where I'd be
started a foundation for him and my
the IMF would have had otherwise. I
without my family and friends. S
husband and I have been very involved
started to figure out whom to send the
with it. And everyone has been
letters to. First, I was just going to send
Note: To date, Terry Herman has helped
extremely generous. Even my neighbors
them to my close friends, knowing that
the IMF raise over $5,400 through the
­ and I've been living here for only 2
they would rally around me. But then I
Mail For The Cure campaign.
quantity:
(UK)
One Year Subscription to Myeloma Today (US)
$_____ (donation)
________
IMF
Kingdom
or
One Year Subscription to Myeloma Today (Int'l) $_____ (donation + $15.00) _______
_________
Back Issues of Myeloma Today (each)
$ 3.00 £ 5.50
________
IMF
Foundation
United
to
Floor
Myeloma Today Anthology I:
______________
nd
3NT
2
Transplantation for Multiple Myeloma
$ 3.00
________
payable
Expiration:
Myeloma
EH1
0800-980-3332
0131-557-3332
0131-556-9720
Myeloma Today Anthology II:
TheIMF@myeloma.org.uk
checks
Place,
(44)
(44)
(44)
Articles of Continuing Interest
$ 3.00
________
elephone:
Office
make
T
to:
York
Comprehensive Guide to Banff
$_____ (donation)
________
UK International
31
Edinburgh
Tel:
Fax:
E-mail:
form
Going for the Cure
Please
FORM
order
by Dr. Francesca M. Thompson
$11.50 £ 7.00
________
FORM
Audio Tapes 2003 Los Angeles Patient Seminar
$35.00
________
Audio Tapes 2002 Seattle Patient Seminar
$35.00
________
___________________
completed
ORDER Audio Tapes 2002 Chicago Patient Seminar
$35.00
________
USA
ORDER
__________________
Forward
Audio Tapes 2002 Dallas Patient Seminar
$35.00
________
AmEx/VISA/MasterCard.
206
WAM 2000 Syllabus Books
$40.00 (while supplies last)
________
and
card:
IMF Logo T-Shirt
$12.00 £10.00
________
on
Foundation
Suite
91607-3421
orders,
IMF Baseball Cap
$15.00
________
VISA/MasterCard:
CA
Drive,
money
452-CURE
487-7455
487-7454
Shipping & handling (International orders only)$ 3.85 £2.50
________
appears
Myeloma
Donation to the IMF
$_____ £_____
________
it
IMF@myeloma.org
checks,
(800)
(818)
(818)
as
The
Total: $_____ £_____
________
Headquarters
Riverside
Hollywood,
accept
* All payments to the IMF originating outside the U.S. must be charged to a credit card.
We
AmEx/Discover/
Name
IMF International
12650
North
Tel:
Fax:
E-mail:

---

News & Notes
2003 IMF ANNIVERSARY GALA
NEW TOLL-FREE NUMBER FOR CLRC
and fabulous auction items. The fea-
tured item was a diamond and solitaire
Plans for this year's Ribbon of
Since 1997, the Cancer Legal
ring generously donated by Los Angeles
Hope Gala are coming along well, thanks
Resource Center (CLRC) has provided
jewelers Adler and Co., long-time sup-
to the hard work of our busy Dinner Co-
information and education to people
porters of the IMF and myeloma research.
Chairs, Teresa and Glen Perez. The
with all types of cancer about their legal
As always, guests and models
evening promises to be a blast for all who
rights and the legal issues they face
enjoyed the afternoon to its fullest. This
attend. The IMF will present awards to
while battling their disease. The CLRC
year "Fashions 4 A Cure" raised over
former NCI Director Dr. Richard
also has access to a panel of volunteer
$23,000 to support myeloma research,
Klausner, the Seattle-based support group
attorneys and other professionals willing
bringing the total raised to over $68,000!
The MM Fighters!, Mrs. John Schwartz,
to assist people with cancer. The CLRC
Our heartfelt thanks to the Barit family
and the Fred Hutchinson Cancer Center.
can be reached through its new toll-free
and to all who supported this event.
Our guests will enjoy touring EMP, a
number (866) THE-CLRC (843-2572).
fantastic interactive museum of music
history, as well as dancing, dining on
FASHIONS 4 A CURE
great food, and dressing up in garb from
their favorite decade of music. Many
The fifth annual "Fashions 4 A
items have been donated to our Live and
Cure" fundraiser was held on April 6th at
Silent Auctions, but we can always use
the Fox Valley Country Club in
more. If you have something you'd like
Lancaster, New York. Once again, the
to donate, or would like more informa-
event was organized by Ashley Barit in
tion about the event, tickets, or sponsor-
honor of her mother Jerra, who was diag-
ships, please call Suzanne Battaglia at
nosed with multiple myeloma in 1998.
(800) 452-2873 or email her at
This year's event featured a chil-
sbattaglia@myeloma.org.
dren's fashion show, a bridal fashions show,
Ashley Barit with model Elena Pezzino
International Myeloma Foundation
12650 Riverside Drive, Suite 206
NON-PROFIT
North Hollywood, CA 91607-3421 U.S.A.
ORGANIZATION
www.myeloma.org
U.S. POSTAGE
(800) 452-CURE (2873)
PAID
PERMIT NO. 665
Address Service Requested
Foundation
Myeloma
International
©2002,
U.S.A.
in
Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
Printed

---