WINTER 2003/2004
VOLUME 5
NUMBER 9
MyelomaToday
A PUBLICATION OF THE INTERNATIONAL MYELOMA FOUNDATION
MESSAGE FROM IMF PRESIDENT
Dear Reader,
research advances and the latest in the
treatment and management of myeloma;
It's that emotional time of year
To all the people who participate
HIGHLIGHTS
again, when we reflect back on the past
in advocacy, writing letters, calling their
year or bygone times, sometimes with tears
legislators, going to Washington DC to
for what we've lost, and sometimes with
make their collective voices heard ­ you
Message From IMF President
smiles for what we've achieved and for the
do make a difference;
Page 1
sweet memories of peo-
To researchers
Advocacy Update
ple who have touched
around the world
Page 2
our lives. It's also a
who are working on
ASH 2003
time to look forward
breakthrough pro-
Page 3
with hope and antici-
jects both in the lab
News & Notes
pation that the New
and in the clinic,
Page 4
Year will bring joy,
bringing us new
peace and good health
therapies, ever clos-
2004 Brian D. Novis
Research Grant Awards
­ it's a clean slate and
er to a cure. To all
Page 5
anything can happen!
the doctors,
Susie Novis
IMF Calendar
This past year
researchers, statisti-
Page 6
has been the IMF's most successful year
cians, data managers, and lab technicians
ever, and we didn't do it alone. The IMF is
who have agreed to collaborate with the
IMFer Profile
Page 6
made up of people of all races, from all
IMF and work together on Bank On A
walks of life and from diverse cultures. We
Cure ­ we will unlock the DNA door to
Ask the Expert
are a kaleidoscope of humanity with a com-
a cure;
Page 7
mon bond ­ multiple myeloma ­ and a
To all the remarkable people who
Did You Know?
belief that one person can make a difference
help the IMF fund these projects, many
Page 8
and two people can make a miracle.
of whom hold fundraising events in every
The Gift of Giving
The IMF is about education, sup-
size, shape, and theme imaginable. From
Page 8
port, research, and advocacy, and we're
walk-a-thons, to golf tournaments, to let-
Dallas Patient & Family Seminar
very grateful to the thousands of people who
ter writing campaigns, to hair cutting and
Page 9
each year selflessly help the IMF help oth-
styling, to a Fiesta for a Cure, they have
ers. To these invaluable individuals we
worked so hard and have produced amaz-
Running for a Cure
Page 10
extend a very heartfelt thank you:
ing results ­ we literally couldn't do it
To the extraordinary doctors and
without you!
2003 Member Fundraisers in Review
nurses who have donated their time and
And finally to the IMF staff. I'm
Page 11
expertise as faculty at the IMF Patient &
privileged to work with such a dedicated
IMF Anniversary Gala
Family Seminars;
and talented team of people who send out
Page 12
To the outstanding support groups
over 1,000 information packages a
IMF Honor Roll
and their leaders who, like the IMF, believe
month, who answer over 400 hotline calls
Page 19
that no one should have to face this alone.
and 200 emails a month, who organize
Working selflessly, they truly make a differ-
seminars and events, who produce all of
This issue of
ence in the lives of patients, families, and
our written materials, and keep the web
caregivers ­ I can't imagine what any of us
site humming with the most updated
Myeloma Today
would do without them;
information available.
They are dedicat-
is supported by
To the writers, editors, and proof-
ed, passionate, deeply caring people who
Novartis Pharmaceuticals
readers of the IMF's many publications
never forget what it's all about and who
Millennium Pharmaceuticals
including Myeloma Today and Myeloma
we all work for ­ you.
Minute. These publications empower
Cell Therapeutics
Thank you all and here's to a
patients, giving them vital information on
Happy and Healthy New Year.

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INTERNATIONAL MYELOMA FOUNDATION
ADVOCACY UPDATE: Congress Adjourns
Dedicated to improving the quality of life
With Support for Myeloma Community
of myeloma patients while working
toward prevention and a cure.
the International Myeloma Foundation
Founder
Brian D. Novis
in this effort."
Sen. Hutchison also champi-
President
oned funding of $5 million for the CDC
Susie Novis
Ferraro education program. The funds
Board of Directors
will be used to establish nationwide edu-
Chairman Dr. Brian G.M. Durie
Michael B. Bell
cation programs for patients and doctors
Mark DiCicilia
for myeloma, leukemia, and lymphoma.
Michael S. Katz
Benson Klein
Details of the program will be made pub-
Dr. Robert A. Kyle
lic in the coming year.
Isabelle Lousada
The funding will not be finalized
Dr. Edith Mitchell
Dr. Gregory R. Mundy
until the Senate returns to vote on the
Charles Newman
bill in January 2004. The House
Susie Novis
Richard H. Saletan
approved the bill containing these pro-
John L. Salter
visions on December 8, 2003.
E. Michael D. Scott
R. Michael Shaw
Greg Brozeit with Former President George Bush and Barbara Bush
Donald R. Woodward
By Greg Brozeit
IMF Headquarters
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421 U.S.A.
Funding to help support the IMF
Tel: (800) 452-2873 or (818) 487-7455
Bank On A Cure® (BOAC) program
Fax: (818) 487-7454
E-mail: TheIMF@myeloma.org
and implement the Geraldine Ferraro
Website: www.myeloma.org
Blood Cancer Education Program at the
Kelly Cox, COO
Centers for Disease Control and
kcox@myeloma.org
Prevention (CDC) highlighted the end
Suzanne Battaglia, Special Events
of the congressional session for the
sbattaglia@myeloma.org
myeloma and cancer communities.
Thanks to the persistent work of
Nancy Baxter, Hotline Coordinator
nbaxter@myeloma.org
Sen. Kay Bailey Hutchison (R-TX), the
conferees to the Labor, Health and
Debbie Birns, Hotline Coordinator
dbirns@myeloma.org
Human Services, and Education appro-
priations bill approved $500,000 to help
Susie Novis and Sen. Kay Bailey Hutchison
Michele Cherney, Exec. Asst. to Ms. Novis
support the IMF's Bank On A Cure pro-
mcherney@myeloma.org
gram. Bank On A Cure will create a
MIXED MESSAGES ON RESEARCH
Spencer Howard, Meeting & Event Services
comprehensive DNA bank to help
AND CANCER CARE
showard@myeloma.org
researchers identify genetic markers to
Marya Kazakova, Publications Editor
assist in diagnosis, facilitate prognosis,
In addition to Hutchison-sup-
mkazakova@myeloma.org
and determine drug efficacy not just for
ported issues, congressional conferees to
Kemo Lee, Subscriptions & Merchandise
myeloma patients, but for all who are
the fiscal year 2004 Labor, Health and
klee@myeloma.org
affected by cancer.
Human Services and Education appro-
Lisa Paik, Information Officer
A recipient of the IMF Ribbon
priations bill agreed to a $1 billion
lpaik@myeloma.org
of Hope Award in 2002, Sen. Hutchison
increase for the National Institutes of
Stephen Robertson, Development
stated, "I have seen firsthand the devas-
Health (NIH). The 3.7% increase--
Coordinator
tation of multiple myeloma. We need
which will bring the total NIH funding
srobertson@myeloma.org
every tool available to advance the diag-
to slightly less than $28.3 billion--is sig-
The information presented in Myeloma
nosis and treatment of this and other
nificantly less than the 8-10% requested
Today is not intended to take the place of
cancers. This DNA bank is just one of
by the medical research advocacy com-
medical care or the advice of a physician.
Your doctor should always be consulted
many examples of the ingenuity being
munity.
regarding diagnosis and treatment.
employed in the fight against cancer,
Please see page 18
and I'm proud to stand side-by-side with
2

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ASH 2003: An Avalanche of New Information
What does it all mean, and where do we go from here?
(Dr. James Berenson); Role of Trans-
overall survival for frontline HDT
plantation (Dr. Jean-Luc Harousseau);
with transplant! There was a slight
Refractory Myeloma (Dr. Paul Richarson);
improvement in progression-free sur-
Novel Therapies (Dr. Donna Weber);
vival with high-dose therapy (25 vs. 21
and Neuropathy (Dr. Robert Kyle). The
months: p=.05). Explanations offered
"Myeloma Educational Session" covered
and discussed for the lack of improve-
Advances in Biology and Therapy of
ment in overall survival were:
Multiple Myeloma. The IMF Myeloma
Working Group addressed a number of
· 52% (89 patients in total) in the
topics, including the new International
standard treatment arm of the study
Staging System (ISS), as well as new
received transplant at the time of
criteria for Response Evaluation and
relapse. Thus the study in reality
Endpoint Definitions.
compared early transplant with late
Although every abstract adds a
transplant, for about half the patients.
new piece of information, it is helpful to
· All the standard (VBMCP) treatment
summarize the major advances, which
patients received high-dose cytoxan
Brian G.M. Durie, M.D.
Cedars-Sinai Comprehensive Cancer Center
fell into several categories:
up front for stem cell mobilization
Los Angeles, CA
and harvesting. This "anti-myeloma
· Role of high-dose chemotherapy
By Brian G.M. Durie, M.D.
intensification" may account for the
with transplantation.
better outcome with VBMCP in this
· Novel therapies, including particularly
The huge number of presentations
S9321 study versus prior protocols
bortezomib (VELCADE TM),
at the American Society of Hematology
(median overall survival of 52 months
thalidomide and analogs, arsenic
Meetings (ASH), December 4th ­ 9th
versus 37 months in prior protocols
trioxide, Doxil® (liposomal doxoru-
2003 in San Diego, capped a truly
without high-dose cytoxan for
bicin), Samarium and Holmium, and
momentous year for myeloma research
mobilization).
Atiprimod.
and new drug development. Earlier this
· The overall prognostic factors in this
· Prognostic factors and staging,
year, bortezomib (VELCADETM) was
study were better than average.
including molecular and cytogenetic
approved by the FDA for the treatment
Since transplant appears to be helpful,
studies.
of multiple myeloma patients who have
particularly for higher-risk patients
· Laboratory-based studies of biology,
received at least two prior therapies and
(e.g. MRC study), but less so for
e.g. stem cell analyses and signal
have demonstrated disease progression.
"normal" or good-risk patients, this
transduction pathways, apoptosis,
Finally, a new drug approved specifically
may account in part for the lack of
immunology and many other aspects
for myeloma! But this was just the most
transplant benefit.
of cell biology.
obvious evidence of the increased focus
· Clinical studies and diagnostic testing,
on myeloma, a disease deserving funda-
So what conclusions can be
including the role of FREELITETM,
mental research as a basis for the search
drawn from this Intergroup study?
MRI, FDG/PET scanning, and SNP
for better therapies.
Unfortunately, not as many as had been
analyses.
At ASH, several sessions focused
hoped. There is support for the notion
on myeloma and related diseases, includ-
that "upfront" and "delayed" transplant
TRANSPLANT (Abstracts #135 - #138)
ing the so-called "Super Friday" sessions
have an equivalent impact upon overall
on December 5th, Educational Sessions,
There was tremendous interest in
survival, as already shown in a French
IMF working group meetings, plus the
the long-awaited results of the SWOG/
randomized study by Fermand et al. But
formal oral and poster scientific presen-
ECOG/CALGB Intergroup randomized
there is also support for the conclusion
tations. Details of many of these ses-
trial S9321 of high-dose therapy (HDT)
that upfront "intensification" with high-
sions can be accessed electronically via
versus frontline standard therapy using
dose cytoxan and/or stem cell transplan-
the IMF website at www.myeloma.org.
VBMCP (vincristine, BCNU, melpha-
tation can improve overall outcome. It
The "Super Friday" session dealt with
lan, cytoxan, and prednisone) (Abstract
remains unclear from this study which
challenging cases, including (topic/dis-
135: presented by Dr. Bart Barlogie).
patient groups benefit from "intensifica-
cussant in parentheses): Initial Therapy
And the answer was: In this particular
tion." The authors conclude that
3
(Dr. Vincent Rajkumar); Renal Failure
study, there was no improvement in
Please see page 15

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INTERNATIONAL MYELOMA FOUNDATION
News & Notes
SCIENTIFIC ADVISORY BOARD
Chairman Robert A. Kyle, USA
PATIENT & FAMILY MEETINGS
AROUND THE WORLD
Raymond Alexanian, USA
If you missed out on the Fort
With 101 myeloma support
Kenneth C. Anderson, USA
Lauderdale Patient & Family Retreat,
groups worldwide, the IMF makes avail-
Hervé Avet-Loiseau, FRANCE
January 23-25, be sure to sign-up for our
able many of our publications in multiple
Bart Barlogie, USA
next seminar in Minneapolis, MN.
languages. Currently we publish online
Régis Bataille, FRANCE
Scheduled for March 12 and 13, the
Meral Beksac, TURKEY
or in hardcopy various materials in 13
William Bensinger, USA
retreat will provide the latest news,
languages. With the generous support of
James R. Berenson, USA
updates and individual consultation
our Corporate Sponsors, the IMF has
Daniel Bergsagel, CANADA
from the world's experts in multiple
plans to expand the number of languages
Leif Bergsagel, USA
myeloma. Dr. Brian Van Ness (Professor
and publications we make available to
Joan Bladé, SPAIN
in the Department of Genetics, Cell
the patient and family, medical and
Mario Boccadoro, ITALY
Biology, and Development at the
research communities. For more informa-
Y.C. Chen, REPUBLIC OF CHINA
University of Minnesota), one of the
tion about publications, please call us at
J. Anthony Child, ENGLAND
foremost myeloma authorities and a lead
800-452-CURE (2873), or visit our web-
Raymond L. Comenzo, USA
investigator for Bank On A CureTM, is
Franco Dammacco, ITALY
site: www.myeloma.org.
scheduled to speak. This is an excellent
Meletios A. Dimopoulos, GREECE
In news from Europe, the
opportunity to meet Dr. Van Ness and
Brian G.M. Durie, USA
International Myeloma Foundation
Dorotea Fantl, ARGENTINA
gain the latest insights into current
(IMF) UK, held its first fundraising din-
Rafael Fonseca, USA
myeloma research. For complete details
ner on Monday, November 17, 2003.
Ian Franklin, SCOTLAND
on this event and upcoming seminars in
Over 300 guests attended the dinner at
Gösta Gahrton, SWEDEN
San Jose (CA), Teaneck (NJ), Vienna
the Langham Hilton London where
Morie A. Gertz, USA
(Austria), and Ankara (Turkey), please
Alastair Campbell was the guest of honor
John Gibson, AUSTRALIA
visit www.myeloma.org and click on
and after-dinner speaker. The £156,500
Hartmut Goldschmidt, GERMANY
"Meetings and Events".
Jean-Luc Harousseau, FRANCE
($ 270,000) raised at this event will go
Vania Hungria, BRAZIL
specifically toward Bank On A CureTM
HEALTHTALK
Douglas Joshua, AUSTRALIA
(BOAC), the first comprehensive DNA
To see and hear the latest news
Tadamitsu Kishimoto, JAPAN
bank for myeloma patients. The goals of
from leading authorities in the field of
Henk M. Lokhorst, THE NETHERLANDS
BOAC are to allow doctors to target
myeloma, visit our online web-cast sec-
Heinz Ludwig, AUSTRIA
treatment for individual patients based
Ian MacLennan, ENGLAND
tion to access information about treat-
on their genetic make up, to avoid side
James S. Malpas, ENGLAND
ment and therapies. Topics include:
effects for those patients considered to be
Jayesh Mehta, USA
Relapsing and Refractory Multiple
Håkan Mellstedt, SWEDEN
at high risk, and finally to understand the
Myeloma: What's New in Research?
Angelina Rodriguez Morales, VENEZUELA
causes of myeloma. For more information
In this informative program, top multi-
Gareth Morgan, ENGLAND
about our U.K. offices and upcoming
Gregory R. Mundy, USA
ple myeloma experts discuss new clinical
events, visit www.myeloma.org.uk.
Amara Nouel, VENEZUELA
trials for relapsing/refractory multiple
Martin M. Oken, USA
myeloma, and one women shares her
THANK YOU!
Linda Pilarski, CANADA
experience participating in a clinical trial.
During the Fall of 2003, many of
Raymond Powles, ENGLAND
Clinical Trial Update for Multiple
you received our update letter and
David Roodman, USA
Myeloma
responded with generous donations to
Jesus San Miguel, SPAIN
Kazuyuki Shimizu, JAPAN
Promising clinical trials are proving very
ensure we continue meeting the needs of
Seema Singhal, USA
beneficial in the treatment and possible
patients and families dealing with myelo-
Bhawna Sirohi, ENGLAND
remission of multiple myeloma. In this
ma. The IMF is very grateful for your
Alan Solomon, USA
program, top experts discuss ongoing
ongoing support and we are honored to
Pieter Sonneveld, THE NETHERLANDS
clinical trials and how they could affect
have this opportunity to publicly thank
Guido J. Tricot, USA
treatment options.
you. Be sure to keep an eye out for new
Benjamin Van Camp, BELGIUM
information and updates in our Spring
Brian Van Ness, USA
To review all available web-casts, go to:
update letter.
Jan Westin, SWEDEN
www.myeloma.org/myeloma/webcasts.jsp
5
4

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2004 BRIAN D. NOVIS RESEARCH GRANT AWARDS
By Robert A. Kyle, M.D.
plans to examine the in vivo anti-tumor
activity of anti-TfR IgG3-Av alone or
Six of the world's most promising
combined with another cancer drug in
clinical investigators have been chosen to
SCID mice bearing human myeloma
receive the 2004 Brian D. Novis Research
cells. This represents a new approach to
Grants from the IMF in order to further
targeted therapy of myeloma.
research into better treatments, manage-
ment, prevention, and a cure for multi-
JUNIOR GRANT AWARDS
ple myeloma. The awards presentation
took place on December 6, 2003, during
Dr. Marco Ladetto, Assistant
the American Society of Hematology
Professor in Hematology at the University
(ASH) 45th Annual Meeting. This is the
of Torino, has demonstrated that COX-2
10th year that the IMF has made grants
expression is common in myeloma. His
possible through donations from private
preliminary data indicates that nearly 35%
Dr. Hideaki Ishikawa
individuals. The awards were bestowed
of myeloma patients show increased ex-
by Dr. Brian Durie, IMF Chairman of the
pression of COX-2. He plans to determine
be hypermethylated in myeloma cells. He
Board and scientific advisor to the IMF,
the presence of COX-2 expression on a
has constructed recombinant retroviruses
and Susie Novis, President of the IMF.
large number of myeloma patients at
expressing SOCS-1 and SOCS-3 proteins.
He plans to continue his investigation
SENIOR GRANT AWARD
into the mechanisms of defective SOCS
gene expression and the tumor-suppress-
Manuel Penichet, M.D., Ph.D.,
ing effects of SOCS protein. He will
Associate Researcher at UCLA, hypoth-
examine the role of hypermethylation of
esizes that antibody-avidin fusion pro-
the SOCS genes which are involved in
teins specific for the transferrin receptor
down-regulating cytokine stimulation.
(antiTfR IgG3-AV) can be used alone or
He will determine whether SOCS-3 is
in combination with other agents as a
hypermethylated in myeloma and whether
novel and effective antiproliferative
the enforced expression of SOCS proteins
drug in myeloma. He will first determine
has an effect on apoptosis and cell growth.
the effect of antiTfR IgG3-AV on cell
proliferation and apoptosis in myeloma
Dr. Mathias Oelke, Research
cells. He will then examine the syner-
Associate at Johns Hopkins University,
gistic effect of the combination of anti-
Dr. Marco Ladetto
proposes developing artificial antigen
body-avidin fusion proteins specific for
diagnosis, remission, relapse, and at pro-
presenting cells for adoptive immuno-
the transferrin receptor with other cyto-
gression. He will quantify COX-2 mRNA
therapy for myeloma. The major prob-
toxic or sensitizing agents. He then
expression and demonstrate COX-2 in the
lem is the presence of functional defects
bone marrow by immunochemistry as well
associated with autologous dendritic cells
as COX-2 expression analysis on assort-
in patients with myeloma, as well as the
ed cell populations. He will evaluate the
lack of a reproducible and economically
prognostic value of COX-2 expression in
viable method for generating antigen-
the outcome of therapy of myeloma.
specific T-cells using autologous dendrit-
ic cells. His preliminary data indicates
Dr. Chao-Lan Yu, Assistant
that HLA-Ig based artificial Antigen
Professor at Vanderbilt University, pro-
Presenting Complexes (aAPC) can pro-
poses to continue his studies on the sup-
duce antigen specific T-cells. If success-
pression of cytokine signaling through
ful, the use of HLA-Ig based aAPC's
SOCS-1 and SOCS-3 proteins. He has
would be a new approach to produce
demonstrated that both SOCS-1 and
large numbers of specific T-cells for
SOCS-3 are present in undetectable
adoptive transfer in myeloma.
levels in two myeloma cell lines. He
hypothesizes that the SOCS-3 gene may
Dr. Manuel Penichet
Please see page 14
5

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IMF CALENDAR
IMFER PROFILE: The Art of Survival
January 23-25, 2004
Don fell on black ice on his home drive-
IMF Patient & Family Retreat
way and severely fractured his left leg.
Ft. Lauderdale, FL
The Woodward chapters since this inci-
March 12-13, 2004
dent in 1995 include a 15" steel plate,
IMF Patient & Family Seminar
staph infection, and periodic severe
Minneapolis, MN
pain. Yet they survive. How?
April 4, 2004
"Running Paris" Marathon
Don's most important helpful
Celebrating Jerry's Journey
hint, which he stresses again and again,
Golden, CO
is to get access to a myeloma "guru" ­ a
April 16-17, 2004
recognized and established expert in
IMF Patient & Family Seminar
multiple myeloma ­ wherever he or she
Vienna, AUSTRIA
may be.
April 22-24, 2004
Torino Clinical Meeting
My wife, Monica, was diagnosed
Torino, ITALY
with multiple myeloma in December
April 29 - May 2, 2004
2002. The following few months proved
ONS Annual Meeting
Don Woodward
very difficult. After the initial shock,
Anaheim, CA
we looked to the standard medical com-
May 8, 2004
By William J. Lauttamus
munity to provide suitable guidance.
Robert A. Kyle Lifetime Achievement Award
Honoring Bart Barlogie, M.D., Ph.D.
Wrong. If we hadn't found Don through
His name is Don Woodward and
Little Rock, AR
the IMF, and weren't able to benefit
he is a living multiple myeloma legend.
June 5-8, 2004
from his knowledge and experience, I
ASCO Annual Meeting
In 1991, Don was visiting his in-laws on
shudder to think what would have hap-
New Orleans, LA
the West coast when severe back pain
pened.
Yet probably the majority of
June 25-27, 2004
forced him to return home, where he
newly-diagnosed myeloma patients rely
Annual IMF Support Group Leaders Retreat
was ultimately diagnosed with multiple
Durham, NC
totally on their local doctor's advice and
myeloma.
never fully consider all of the myeloma
July 2004
Don grew up in the
IMF Patient & Family Seminar
treatment options available to today's
Ankara, TURKEY
Washington, D.C. area and attended
patients. My wife is now treated by a
Washington-Lee High School in
July 26, 2004
hematologist/oncologist who is very well
Kathy McCormick Memorial Golf Tournament
Arlington, Virginia. Then on to
versed in the treatment of multiple
Hampstead, MD
Stanford University and graduate school
myeloma.
September 18, 2004
in international affairs at the George
Don's second helpful hint is to
IMF Patient & Family Seminar
Washington University. He served four
Barcelona, SPAIN
maintain a positive attitude. If you have
years on the Peace Corps staff before
a spouse, family member, or friend who
September 24, 2004
becoming a foreign service officer, which
IMF Patient & Family Seminar
takes an interest in your welfare, it
Kyoto, JAPAN
included assignments in Pakistan and
makes coping easier than going it alone.
Afghanistan.
September 25, 2004
Our family has found that this can be
IMF Patient & Family Seminar
Now a grumpy old man of 68,
reinforced through a support group. The
Paris, FRANCE
Don resides in a lovely tree surrounded
IMF maintains a listing of myeloma sup-
October 1, 2004
home in McLean, Virginia, with his gor-
port groups ­ in the U.S. and wordwide
IMF Patient & Family Seminar
geous wife Annette. How she has put
Torino, ITALY
­ which can be requested by phone or
up with his antics over the past forty
email.
October 8-9, 2004
years remains a mystery that only the
IMF Patient & Family Seminar
Now retired, Don mainains a
Teaneck, NJ
Heavens understand. Always mentally
very active life. He travels, reads adven-
alert, Don has the ability to totally deci-
November 6, 2004
ture novels avidly, frequently visits with
Ribbon of Hope Gala
mate those within hearing range who
family and friends, and participates in
Los Angeles, CA
are struggling linguistically, and the irri-
IMF activities as a member of the Board
December 3-6, 2004
tating part is that he is generally correct.
of Directors. Annette still maintains a
ASH Annual Meeting
Don and Annette really repre-
San Diego, CA
full-time position in the hotel marketing
sent John Wayne's "True Grit". After
For more information, please visit the IMF
field. As a multiple myeloma spouse, she
surviving the early days of modern mul-
online at www.myeloma.org or
Please see page 18
call us at (800) 452-CURE.
tiple myeloma therapy (1991-1995),
6

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ASK THE EXPERT: What's New With the Use of VELCADETM in MM?
were considered non-responsive to
frequency of severe neuropathy (grades 3
Doxil® or other agents of similar class,
or 4) was only 10%; about 50% of the
significant responses were seen. A phase
patients did develop some neuropathy
II/III trial evaluating this combination
(grade 1 or 2). Overall the regimen was
with fixed doses of both the Doxil®
quite well tolerated, and is currently
(40mg/m2 on day 4) and bortezomib
being studied in a larger group of
(1.3mg/m2 on days 1,4,8, and 11) trial is
patients, but should be done with careful
planned.
attention to the issue of neuropathy.
Dr. Yang and colleagues from
In response to the overwhelm-
Cedars-Sinai reported on their trial
ingly positive data with either single
combining oral melphalan with borte-
agent or combinations of agents with
zomib at very low doses. This trial is
bortezomib, Dr. Jagannath and his col-
based upon in vitro data from Dr.
leagues from the Salick network report-
Bersenson's and Dr. Anderson's groups
ed on the first 16 patients enrolled to
showing that there was significant syner-
receive bortezomib as first-line therapy
Sagar Lonial, M.D.
gy when these agents were given togeth-
for symptomatic myeloma. In this trial
Assistant Professor, Hematology Oncology
er, and that very low doses of both
patients received standard bortezomib at
Director of Translational Research, B-cell Malignancy Program
Winship Cancer Institute
agents could be used. Dr. Yang started
a dose of 1.3mg/m2 on the day 1, 4, 8, 11
Emory University School of Medicine
Atlanta, Georgia
with doses of bortezomib of 0.7mg/m2
schedule every 21 days. Patients did not
(half the usual dose) given on days 1,4,8,
receive dexamethasone unless the response
By Dr. Sagar Lonial
and 11, with doses of melphalan as low
after 2 cycles was less than a PR, or the
as 1/10 the usual starting dose, and
response after 4 cycles was less than a
The past 12-18 months have
increasing up to higher doses of melpha-
CR. Among the first 12 evaluable
seen the introduction of multiple new
lan. In this dose escalation trial, 12
patients, 75% achieved either a PR or
therapeutic options for patients with
patients achieved a response with 10 PRs,
near CR, and stem cell collection and
newly diagnosed or relapsed multiple
and 4 patients who achieved minor
subsequent transplant have been
myeloma. The annual American
response or stable disease. The only
uneventful thus far. While the authors
Society of Hematology (ASH) 2003
major toxicity was the expected suppres-
are cautious about making predictions
meeting was filled with reports of new
sion of blood counts seen with melphalan.
based upon this small cohort of patients,
agents and updates on recently novel
Further study of this combination is also
this preliminary analysis is promising
combinations of existing agents for the
planned, and really highlights the bene-
not only from the standpoint of respons-
treatment of multiple myeloma. This
fit of well-designed clinical trials mod-
es to initial therapy, but also because of
report contains a brief summary of some
eled after well-designed laboratory work.
the stem cell collection and transplant
of the exciting data presented during the
Dr. Zangari and colleagues from
data that are planned as part of this trial.
meeting utilizing the newly approved
Arkansas also presented data on the
To date there is no reason to suspect
agent bortezomib (VELCADETM).
combination of bortezomib/thalidomide/
that the collection of stem cells for a
Dr. Orlowski and colleagues
dexamethasone. Nearly all of the patients
subsequent transplant is an issue for
from the University of North Carolina
in this trial had received prior transplant,
patients receiving bortezomib, but other
reported on a phase I trial combining
81% had received prior thalidomide,
studies will also address this issue.
bortezomib with the liposomal agent
and 75% of the patients in the trial had
Three abstracts were presented
Doxil®. The trial was open for any
abnormal cytogenetics. Because of con-
to further describe toxicities of borte-
relapsed hematologic malignancy and 24
cerns regarding neuropathy among
zomib or its use in patients with renal
patients with myeloma enrolled in the
recipients of both bortezomib and
insufficiency. The first was an abstract
trial. Among the 22 evaluable multiple
thalidomide, the thalidomide was started
presented by Dr. Richardson from the
myeloma patients, 5 patients achieved a
at a dose of 50mg/day and increased to a
Dana-Farber Cancer Center on behalf of
complete remission (CR), 2 patients
maximum dose of 200mg/day. Despite
the Summit and Crest studies looking at
achieved a near CR, 8 patients achieved
starting with a low dose of thalidomide
the problem of peripheral neuropathy.
a partial remission (PR, > 50% reduction
in combination with the bortezomib, 22%
Among the patients entered into those
in serum protein), and 6 patients achieved
of patients achieved a CR or near CR, and
two trials, 81% had neuropathy at the
either a minor response or stable disease.
50% of patients achieved a PR. Along
time of study entry, and 35% developed
The toxicities from this trial were mod-
with the impressive response data, the
est, and among a subset of patients who
Please see page 18
7

---

DID YOU KNOW?
THE GIFT OF GIVING
EARN AMERICAN EXPRESS® POINTS
By R. Michael Shaw, CPA, JD
car's Blue Book value. For vehicle dona-
tions, you must document the both the
Now is the time to think about
The American Express® card
car donation and its fair market value.
2004 tax planning for charitable contri-
makes giving easier. You can now donate
butions. We at the IMF hope that you
· You might also want to consider a
online through a secure website at
will help us continue our important
contribution through some type of trust
www.guidestar.org/partners/amex/index.jsp
work on behalf of the multiple myeloma
that would enable you to keep current
and earn Membership Rewards® points
community. Your support enables us to
income from the property but donate
when you charge your contribution to
provide the many services we offer,
the balance to the IMF after your pass-
an eligible, enrolled American Express
including valuable programs designed to
ing. In most cases, you would get a cur-
Card. You will receive an email confir-
assist patients and caregivers. Here are a
rent deduction for the present value of
mation minutes after making your con-
few tips to help make sure your contri-
the property being donated.
tribution. Best of all, donating online
butions pay off on your tax return:
helps us reduce administrative costs.
· For a contribution of $250 or more,
· To be deductible, contributions must
you can claim a deduction only if you
And that means we're able to put your
be made to qualified exempt organiza-
obtain a written acknowledgment from
generous support directly into research
tions, such as the IMF.
the qualified organization. A person
for a cure, patient and family initiatives,
donating property valued at more than
and educational conferences, work-
· Only contributions actually made
$5,000 must obtain a qualified written
shops, and seminars. The IMF is proud
during the tax year are deductible.
appraisal with the exception of publicly
to be listed on the American Express
Credit card charges and payments by
traded securities.
Donation site.
check are deducted in the year they are
given to the charity, even though you
For more information, please
MATCHING GIFTS
may not pay the credit card bill or have
visit the IMF website at www.myeloma.org
your bank account debited until the
for a link to Smith Barney's booklet
Some employers will match
next year.
Giving Back: Techniques for Charitable
Giving. If you have questions about the
employee's gifts to the IMF. To obtain a
· If your contributions entitle you to
deductibility of charitable contributions,
matching gift form, please contact your
merchandise, goods, or services, includ-
you can download Publication 526:
employer's personnel or employee rela-
ing admission to, for example, a charity
Charitable Contributions, and Publication
tions office. Send the form, accompa-
ball, banquet, theatrical performance, or
561: Determining the Value of Donated
nied by your donation, to the IMF and
sporting event, you can deduct only the
Property, from the Internal Revenue
we will do the rest.
amount that exceeds the fair market
Service's website at www.irs.gov. We
value of the benefit received. For an
also recommend that you discuss all sub-
REAL ESTATE
item purchased at a charity auction, only
stantial charitable contributions with
the price paid in excess of the value of
your tax advisor as everyone's situation
Real property, either in entirety
the item purchased is deductible.
is different. 5
or in part, can be deeded to the IMF.
It
· Donations of stock or other property
Note: R. Michael Shaw is a member of
is possible to arrange a sizable tax deduc-
are usually valued at the fair market
the IMF Board of Directors. For more
tion by deeding a home to the IMF
value of the property. For stocks and
information about making a donation to
while continuing to occupy the property
bonds with an active market, the fair
the IMF, please contact Suzanne
for life.
market value is the average price
Battaglia at 800-452-CURE (2873) or
between highest and lowest selling price
SBattaglia@myeloma.org.
GIFTS WITH LIFELONG INCOME
on the valuation date. This can be very
beneficial if the stock or bond is worth
Donors can transfer money,
considerably more than what you paid
securities, or real estate in trust to the
for it.
IMF and receive income for themselves
or others for life. Donors may receive
· Those who donate their cars may also
claim only the fair market value of the
immediate tax benefots. And, ulti-
car. The fair market value takes into
mately, the IMF will receive the trust
account many factors, including the
property. 5
vehicle's condition. The fair market
value may differ substantially from the
8

---

DALLAS PATIENT & FAMILY SEMINAR: An Open Letter To The IMF
came to Baylor University Medical
Center in downtown Dallas to give us
their treatment, their care. They taught
us, they listened to us, they ate meals
with us, they helped us, and they cared
for and about us. And then, they
thanked US, not the other way around!
By their tradition, the IMF
always has Dr. Durie attend the Friday
afternoon meeting of the local support
group. Our North Texas Myeloma
Support Group was eagerly looking for-
Peter and Lucy Tischler
William and Marcia Sawyer with Lynn Schroff
By Peter Tischler
IMF staffers Spencer Howard,
Lisa Paik, and Debbie Birns smoothed
Medical care has two aspects:
out bumps as they appeared throughout
medicine and care. Because of technol-
the weekend. If there were a phrase to
ogy, the medicine has taken great strides
characterize their work, it would be
forward in recent decades; but care seems
"they cared for us." Greg Brozeit arrived
to keep falling further and further behind.
on Saturday and, with his characteristic
Insurance companies rule and we're
passion, implored us to write and call
often lucky to get fifteen minutes of a
our congress-people about funding con-
doctor's time -- sometimes we're shunt-
Dr. Vesole
Dr. Stone
ward to having him all to ourselves for a
couple of hours. At the eleventh hour,
however, Susie and Brian had to make
an important stop in Boston and would
arrive in Dallas too late for our meeting.
Susie came up with a wonderful
solution. She found an excellent sub-
stitute doctor for our group meeting and
also arranged for Brian to be available at
Bob and Benetta Tindall with Susie Novis
Yelak Biru, Teresa and Phillip Westine, and Loul Haugs
ed off to a Physician's Assistant or nurse.
cerns. Greg also stopped by our support
As myeloma is not, for the most
group table and complimented the group.
part, a young person's disease, most of us
And so, we in north Texas had a
remember and long for the days when
house call where we were given every-
doctors would make house calls and
thing we needed to feel better. We were
knew you by name without having to
honored, praised, exhorted, educated,
consult a chart. However, maybe those
touched, hugged, laughed with, cried
days are not gone entirely, because on
with, and loved. We received CARE.
November 7-8, the IMF made a house
And we are very, very grateful.
call to Texas. Susie Novis, Dr. Brian
Thank you, Susie; thank you,
Durie, Mike Katz, IMF faculty and staff
Brian; thank you, Mike; thank you to all
Maria and Lee Hansen with Susie Novis
the Saturday afternoon breakout session.
Most of our support group attended that
session to get their questions answered.
In addition, our members were able to
network with Brian and the IMF Faculty
throughout the weekend.
Susie threw us a party (she's
really good at that!) on Friday night at
the Fairmont Hotel, with a cocktail
reception and dinner. She honored
some of the attendees, including many
from our group, for our support of the IMF.
9
Patricia and Bob Larzelere
Dorothy and Hollis Tinsler with Susie Novis

---

RUNNING FOR A CURE
secutively. So I entered the race and
the course. We continued a light regi-
began training with a group of friends
men of training and familiarized our-
from Milton, Ontario, where I now live.
selves with swimming in the ocean (a
We were fortunate to have a
new experience for many), windy bike
wonderful and experienced coach who
courses, and routes for the bike and run.
planned all of our workouts for us and
Race Day dawned on November
motivated us to finish our long bike rides
8 with perfect conditions ­ sunny, with
and three-hour runs in all types of weather.
flat water, not much wind, and a temper-
In winter, we would train on bike train-
ature of about 80 degrees. We plunged
ers in our basements, swim with a local
into the Gulf of Mexico at 7:00 am and
Masters swim team, and run outdoors.
our Ironman journey had begun! I had a
When the spring came, we started to bike
fantastic time! I kept thinking to myself,
outdoors, extending the rides to four and
"How lucky I am to be able to do this!"
five hours at a stretch. In May, we began
I seriously felt like I had been training my
swimming in Lake Kelso with our wetsuits
whole life to do this type of event. And
on to keep us warm. All of us entered
everything went like clockwork. I had no
shorter triathlons to practice tranisitions
real problems to speak of, nothing went
and test our fuel (food and sports drinks)
wrong with my equipment, my fuel did
for Ironman Florida. We had a lot of fun
the job, my body didn't hurt too much.
By Sue Trerise
as we got fitter, even though the training
I had one low period when I came to the
took up to 15-18 hours a week. I have
second loop of the run where I thought,
I decided to register for Ironman
been doing triathlons for 10 years but I
"Oh no. I have to go out and run anoth-
Florida in November, 2002, because I
was still daunted by the thought of doing
er 13 miles in the dark!" But the group
wanted to do something to honour
an Ironman. Fortunately, I was training
from Milton was cheering me on and,
Werner Mark, a friend of the family
with athletes who had Ironman experi-
after I had a couple of handfuls of M&Ms
from our days in the small town of
ence. Their advice and assistance was
and changed my socks, I was ready to finish
Orangeville in Ontario, Canada. Our
invaluable to me as I got closer to race day.
what I had started. And whenever I start-
children grew up together, attended
In September and October
ed feeling sorry for myself, I remembered
each other's birthday parties, learned to
2003, I started my mental preparation
what Werner had suffered with in fight-
ski, and went to school together. We
for the race and kicked off my fundrais-
ing his cancer and got on with the job...
spent a lot of time socializing with the
ing efforts for multiple myeloma. I was
Finally, I reached the last mile of
Marks, playing bridge, having dinner
very excited by the response that I
the marathon run and was overcome with
parties, and having fun outdoors.
received through Active Giving.com,
emotion. I had this picture of Werner
Werner died from multiple
the fundraising website associated with
running in the dark, back in Orangeville,
myeloma in June, 2002, while still in
Ironman Florida. I sent emails to friends
looping through my brain all the way to
his early fifties, just as his three children
and they forwarded them on to their
the finish line. The roar of the crowd as
were blossoming into young adults.
friends and that really helped get the
I came closer was unbelievable! I ran
Werner's wife Nora explained to me
word out. I heard from many people that
with everything I had left in me and
how much he suffered during his last
I hadn't been in touch with for years
crossed the finish line in 13 hours, 26
months, with his fragile bones breaking
because of the fundraising for Werner, and
minutes, and 36 seconds ­ about an hour
from simple movements that those of us
that was extremely gratifying. I know
and a half earlier than I had expected. I
who are healthy take for granted. This
that Nora and her children, Christina,
was thrilled, amazed, and totally exhila-
seemed so ironic to me, as I had always
Andrew, and Darren were also quite
rated! What an experience!
admired Werner's athleticism.
touched by the generosity of so many
I am very grateful to my friends,
I remember him running in the
friends and associates from years past.
family members, and colleagues who
dark through the streets of Orangeville in
On November 1, my husband
made a donation to my fundraising
winter after putting in a long day at work
and I travelled to Panama City Beach
efforts and helped me reach for my
as an engineer for Husky. He was very
where Ironman Florida was held. We
dream. I know that all the donors would
dedicated to health and fitness. I felt
stayed with nine other participants from
join me in hoping and praying that the
very blessed to be healthy enough to
my training group in Milton and had a
funds raised will someday soon help to
take on the challenge of an Ironman
wonderful group of cheering spouses and
find a cure for multiple myeloma
which entails a 2.4 mile swim, 112 mile
partners to inspire us while we were on
and other related cancers.
bike ride, and a 26.2 mile run done con-
5
10

---

2003 MEMBER FUNDRAISERS IN REVIEW
a wonderful gesture! The annual
WAMP Swim-A-Thon was a huge suc-
cess once more this year and we thank
Liz Stafford and her family for continu-
ing this wonderful event.
In the music and entertainment
genre, Robert Cait at the Laugh Factory
was a hilarious night of comedy at the
famous stand-up comedy club in
Hollywood.
IMF member Domenic
Guastaferro performed several wonderful
Susie Novis and Dr. Brian Durie with
classical concerts, including Mozart to
Ashley Barit with Fashions 4 A Cure model
Francoise and Jerry Pransky
Musicals and Handel. The 2nd Annual
By Suzanne Battaglia
donations went to the IMF. What a
Musicians Against Myeloma concert,
wonderful way to help so many people!
organized by IMFer Naomi Margolin in
This has been a banner fundrais-
The Fusco Family 5th Annual
ing year for the IMF, thanks in large part
Yard Sale for MM was its usual success,
to our members' untiring dedication and
as was the Arizona Chiliheads Cookoff.
ingenuity in developing and executing
And to end the year, Kit and Cindy
compelling fundraising events. The IMF
Crawford, who participated in their
has been able to meet its 2003 goals well
community's Christmas At the Faire
in advance of our projected target and
event, donated the proceeds from the
new and long-time members are already
preview and raffle to the IMF in honor
contacting us to get on the 2004 IMF
of the event's founder, myeloma survivor
calendar of events! Here are some of
Carol King.
the highlights of the 2003 IMF events:
These events demonstrate the
WAMP Swim-A-Thon
Our more sports-minded mem-
committment, resourcefulness, and inge-
honor of Lee Grayson, brought together
bers held various tournaments, walks,
nuity of our membership. We thank you
dozens of musicians for an afternoon of
runs, swims, and other athletic events.
and look forward to your participation in
music and laughter.
The Malone Family's 1st Annual IMF
2004!
Jerry Pransky orchestrated the
5
Multiple Myeloma Golf Outing featured
first Fiesta for a Cure benefit at the
a hole in one and a donated Harley
Mountain Gate Country Club in Los
Davidson, the Corporate Challenge
Angeles. The event, replete with high-
Charity Golf Tournament was a smash
end raffle and auction items, was an out-
hit, and the 2nd Annual Ralph Ferrizzi
standing success, and will be duplicated
Memorial Golf Tournament, the Gary
in other cities throughout the country.
C. Heuer Golf Tournament, and the
Other IMFers spearheaded
J.C. Invitational Golf Tournament
fundraisers based on their own innova-
exceded all expectations! Other creative
tive ideas, such as Hair Cares, Kerri
events included Lisa Doyle's Mile High
Marioni's day of beauty in which a local
March for Myeloma, held in honor of
salon donated all their proceeds from
her dad, Ed Davenport, the Haaz Family
the day to the IMF. Also in the fashion
Mile High March for Myeloma
"I Walked for Bob" Walk and
and beauty mode was Fashion For A
Note: If you have a fundraising idea,
Breakfast, held in honor of Bob Haaz,
Cure, once again organized by the
Suzanne Battaglia is waiting for your call
the New York Bike Tour's Biking for
remarkable Ashley Barit in honor of her
at 800-452-CURE (2873) or email at
Bernstein, held in honor of Elliot
mom, Jerra. Gabriela Seidler and
SBattaglia@myeloma.org. She will pro-
Bernstein, and March Madness, a bas-
Rebecca Soffer grew their hair for a year
vide IMF materials and advice on how
ketball game organized by Julie Iodice, a
in honor of Gabriela's mother, then held
to make your event successful and fun.
student and staunch IMF supporter for
a hair-cutting event. The hair went to
Whether it's a bake sale or sports event,
years. A Race for Richie was organized
Locks of Love, an organization that
or something that's never been done
by young Jared Bornstein for his Bar
makes wigs for kids with cancer, while
until you do it, the IMF is here to
Mitzvah and in honor of his Dad ­ what
money raised from the party, raffles, and
support and help you make it a suc-
11

---

SEATTLE'S FINEST HONORED AT THE
on a tidal flat. Not surprisingly, those
homes were destroyed by flooding and
the city was plagued by persistent prob-
lems with unsavory sewage backups and
outrageous political corruption leading
to fiscal ruin and construction fiascos.
Ultimately, these issues were resolved by
covering up the old city and rebuilding
on higher ground. Below the streets of
Seattle, there is an abandoned city, com-
plete with sidewalks and storefronts.
Guest of Honor Dr. Richard Klausner with Bank On A Cure co-chairs Dr. Gareth Morgan and Dr. Brian Van Ness,
and Dr. Brian Durie, and Susie Novis
By the Unknown Patient
and Naomi Margolin, along with staffers
Suzanne Battaglia, Spencer Howard, and
The Unknown Patient was real-
Kelly Cox to check out arrangements for
ly excited to get on the plane for Seattle.
the gala. The gala site was the Experience
He had been to Seattle on business
Music Project (EMP) museum, located
many times before, at one point doing a
near Seattle's famous "Space Needle."
Dr. Fred Appelbaum accepts the Quality of Life Award on behalf of
weekly cross-country commute to work
It's a cool building, inside and out. And
the Fred Hutchinson Cancer Research Center from IMF's Mike Katz
with a local "dot com" during the
it looked even cooler that day because
Much of Saturday was spent
Internet gold rush. This trip, though,
with more IMF board discussions and
wasn't about work.
It was about honor-
final preparations for the gala. It passed
ing some very special people, seeing old
in a flash and the Unknown Patient
friends, raising money for the IMF, and
soon found himself in a large tent out-
playing tourist. What could be better?
side the museum, getting an early peek
Arriving at his hotel on Friday,
at the silent auction items. Besides
your Unknown traveler was just in time
hotel and spa packages, jewelry, artwork,
for an IMF board Meeting discussing some
and gift certificates, there were some
pretty exciting projects, most notably
wonderful handicrafts donated by local
Bank On a Cure (see http://boac.org) and
patients and caregivers. The Unknown
the International Prognostic Index (see
Patient also spied IMFers Robin and
http://ipi.myeloma.org). After the board
Michael Touhy gawking at a very cool
meeting, he joined IMFers Mike Katz
Dinner co-chair Karen Chandler
IMFer Mike Katz was previewing a mul-
timedia presentation about the IMF on
the JumboTron outside the museum and
on HDTVs inside the museum.
After this business was done, the
Unknown Patient talked Mike and Naomi
into playing tourist, making their way to
one of Seattle's weirdest attractions, the
Underground Tour, a hysterical tongue-
in-cheek recounting of the history of the
city, focusing on its chronic problems
with water. For some Unknown reason,
Tom and Mary Blakney accept the Ribbon of Hope Award
Michael Tuohy sets the mood
Seattle's founding fathers built the city
on behalf of the MM FIGHTERS!

---

HE XIIITH ANNIVERSARY IMF GALA
The Schwartz Family accepts the Courage Award
on behalf of John Schwartz
electric guitar (Robin later bid on and
won the guitar, surprising her lucky and
talented hubby). Bidding was brisk at
the auction, but the Unknown Patient
The JumboTron welcomes IMF supporters to the Experience Music Project
managed to pick up an autographed
Unknown Patient, who, like Michael,
Excitement followed as auda-
"Everybody Loves Raymond" script and
isn't planning on leaving anytime soon.
ciously aggressive auctioneer April Brown
some handicrafts. He was happy to lose
Next up was Mike Katz, who
whipped the crowd into a philanthropic
a number of items because some persons
presented the IMF Courage Award to
shopping frenzy as they bid for a prodi-
even more stubborn than your Unknown
the family of John Schwartz, who lost
gious parade of wonderful items. April's
bidder refused to say "Uncle" and drove
his valiant struggle with myeloma last
humor and enthusiasm was infectious.
the price way into the stratosphere.
year. John set an example for all of us,
working tirelessly and giving generously
to help fellow myeloma patients. Mike
then talked about how important educa-
tion is in our personal battles with
myeloma. "Knowledge is power," said
Mike. "And, in the war against myelo-
ma, support groups are our weapons of
mass instruction." After ducking for
cover while the crowd reacted to that
horrible pun, Mike presented the IMF
Ribbon of Hope Award to Seattle's sup-
April Brown whips the crowd into a philanthropic shopping frenzy
port group, the Northwest Multiple
She even led an impromptu auction
Dr. Robert A. Kyle and Dr. Richard Klausner
Myeloma Fighters. Mary and Tom
appeal to make donations to help jump
More money for a good cause ­ the IMF!
Blakney and other gregarious group
start Bank On A Cure. Bravo April and
At the auction, even when the
members accepted the award.
bravo to all of our generous bidders!
Unknown Patient loses, we all win!
Next, the IMF Quality of Life
The crowd then moved into the
award was presented to the world-
museum for the dinner. Emcee Michael
renowned Fred Hutchison Cancer
Brown asked the boisterous guests to
Research Center, which has played a key
simmer down and then introduced IMF
role in many important discoveries
President Susie Novis and Chairman
about myeloma and other cancers. In
Brian Durie.
Susie and Brian welcomed
2002, the IMF held its first Interactive
everyone and then introduced Michael
Seminar at the Hutch, hosted by Dr. Bill
Touhy, a myeloma surivior, who sang his
Bensinger and IMFers John Schwartz
original composition, "I'm Not Leavin',"
and Rich Dennison. Dr. Fred Applebaum
accompanying himself on his guitar.
accepted on behalf of the Hutch.
Michael's song strikes a chord with the
13
Dinner co-chair Teresa Perez celebrates an auction victory
Please see next page

---

WHO IS THE UNKNOWN PATIENT?
GALA - continued
the concourse to board his 6am flight
back to the East Coast. 5
Recently, a number of IMFers have
contacted the Foundation wondering just who
Note: To take part in next year's IMF
this Unknown Patient is and why he chooses to
Gala, please contact Stephen Robertson
hide his identity. Well, the good news is that it's
a long story. The Unknown Patient was diag-
at 800-452-CURE (2873) or via srobert-
nosed thirteen years ago--so don't believe
son@myeloma.org for more information.
everything you read about survival times.
Although very active in the myeloma
community and in cancer advocacy, he chooses
RESEARCH GRANTS - continued
to keep a low profile about his disease outside
Dr. Francesco Piazza, Research
those circles.
Why is that? Does he have some
Assistant at the University of Padova,
Unknown psychological disorder? Is he in denial?
The answer is none of the above. He has always
More money for a good cause!
will study the roles of CK2 and GSK-3
been a stubborn person. When he was diag-
serine-threonine kinases in the regula-
Next, Mike Katz presented guest
nosed, he read the statistics about myeloma and
tion of proliferative and survival path-
of honor Dr. Richard Klausner with his
spent some time cursing the Unknown chain of
ways in myeloma. CK2 phosphorylates
events that put him in this predicament, grieving
award. Mike found it appropriate that we
IkB in the C-terminal PEST domain,
his fate. He realized he had hit bottom when he
were in a venue more suited to rock stars
altering its stability. This PEST domain
found himself sitting at his piano, playing "O
than scientists, because, "Dr. Klausner is
Terra Addio" ("O Earth, Farewell") from
is also a substrate for calpain-mediated
truly a rock star in cancer research."
Verdi's Aïda. It was at that point that he decid-
degradation of IkB phosphorylation by
Rick revamped the clinical trials system,
ed to focus on living now and leave the dying
CK2. CK2 may facilitate its calpain-
instituted bold new programs in genet-
part for later. He also decided that he did not
dependent degradation in B-lymphocytes.
want to tell his mother about his illness, which
ics, molecular biology, and targeted ther-
He plans to assess the importance of CK2
meant that he did not want her tripping over his
apies. A brilliant scientist and a pas-
directed IkB phosphorylation in myeloma.
name in print talking about myeloma.
sionate and articulate advocate for can-
He began writing for Myeloma Today
NF-B drives transcription of c-myc which
cer research, Dr. Klausner was the first
ten years ago, authoring the first edition of the IMF
is crucial for proliferation in myeloma.
NCI Director to speak at an IMF Patient
Patient Handbook. He asked Susie Novis not to
He also plans to test whether the NF-B
& Family Seminar, giving of his scarce
use his name. Together they came up with the
and CK2 may collaborate in the c-myc
pen name "Unknown Patient," drawing their
personal time to bring a message of hope
pathway and influence myeloma cell
inspiration from "The Unknown Comic," a
to hundreds of patients and caregivers.
proliferation and apoptosis. These find-
performer who did a standup routine with a
He currently heads the Gates
paper bag over his head.
ings suggest that CK2 counteracts apop-
Foundation's Global Health Program,
In the ensuing years, the Unknown
tosis. GSK3 can also modulate NF-B
whose goal is to improve the quality and
Patient has "bar mitzvah'd" three sons, cele-
function. GSK3 has been shown to be
equity of health care worldwide.
brated his 25th wedding anniversary, attended all
essential for the onset of an NF-B derived
three sons' high school graduations, two sons'
The rest of the evening was
antiapoptotic transcriptional program
college graduations, joined the IMF's Executive
filled with good food and good friends,
downstream of T1Fk. He aims to study
Board, served a term on the Board of Directors
as well as a tour of the museum which
of a billion dollar corporation, made senior part-
how GSK3 affects NF-B downstream.
contains many treasures from the world
ner at his day job, served two years as President
of music. The Unknown Patient barely
of his Synagogue, chaired patient advocate com-
Dr. Hideaki Ishikawa of
made it into bed before his 4am wakeup
mittees at the National Cancer Institute and the
Yamaguchi University will undertake
Eastern Cooperative Oncology Group, served
call, signaling the end of a great week-
the investigation of the molecules con-
as a patient consultant for the Food and Drug
end as he cautiously careened through
trolling myeloma cell growth and appli-
Administration, started two in-person support
groups as well as an internet listserv for myelo-
cation for therapy. This research grant
ma and amyloid patients, and on and on. His
is made possible through IMF Japan in
mother never found out about his disease, pass-
memory of Aki Horinouchi. Mr.
ing away peacefully earlier this year at the age of
Horinouchi was the founder of IMF
eighty-seven. So, your Unknown scribe hopes
Japan.
you will forgive him his eccentricity as long as
his luck holds out and progress in research keeps
out ahead of the beast we call myeloma.
The IMF appreciates the evalua-
Many of you know or have guessed his
tion and preparation of critiques of the
generally Unknown identity. If any of you are
research grant proposals by Professor
really desperate to know who he is or would like
Håkan Mellstedt and other IMF
to contact him, feel free to send him an email at
Scientific Advisors serving on his
unknownpatient@myeloma.org or send him a
Mary and Kelly Cox with Jean T. Brewer and Dr. Brian Durie
committee of reviewers.
letter at the IMF. 5
5
14

---

prior French (IFM) and UK (MRC) data
ASH 2003 - continued
24 months of follow-up) combining sin-
indicate that transplant is particularly
gle autotransplantation with mini allo-
although the overall results with treat-
helpful for some poorer-risk patients
geneic transplant were presented. The
ment in S9321 were better than in prior
(e.g. high pretreatment serum 2
"single auto/mini allo" combination was
standard-dose protocols, the low CR
microglobulin, such as > 8 or > 10
not superior to double autologous trans-
(complete response) rate of 17% may
mg/dl) and/or patients failing to have
plant and carried a substantial added risk
explain the lack of added benefit with
complete remission prior to the proce-
of complications. It seems the IFM will
the upfront high-dose therapy.
dure. But it is also true that good-risk
prefer the double auto approach for
The next Abstract, #136, also
patients achieving CR can do unusually
future studies. It is worth noting that
presented by Dr. Barlogie, emphasized
well with autotransplant. It seems rea-
double transplant, which produces com-
the importance of achieving complete
sonable to attempt to achieve complete
plete remission in patients who were not
remission as an essential step toward
remission, whether that be with a single
in complete remission with a single
achieving benefit from transplant,
and/or a tandem (double) autologous
autotransplant, confers added benefit.
including extended survival. For the
transplant procedure. However, this
Three posters dealt with auto-
Total Therapy I and II patients treated
shifts the focus of attention to achiev-
transplantation (Abstracts #1630, #1651,
in Little Rock, the achievement of com-
ing complete remission as an endpoint
#3656). Dr. Bhawna Sirohi (#1630)
plete remission is what translates into
presented the results from
longer overall survival.
the Royal Marsden in the
This presentation
UK, evaluating long-term
was followed by another
survivors, including 13
that also failed to show
patients in first complete
improved overall survival
remission for over 10 years.
with stem cell transplant
Predictors for long survival
versus standard-dose
were: complete remission
chemotherapy (in this case,
with pre-transplant induc-
standard therapy with alter-
tion, which is pertinent to
nating VBMCP and VBAD
the above discussions;
[vincristine, BCNU,
younger age (< 55 years);
Adriamycin, and dexa-
and a trend for lower serum
methasone]). The long-
ß2 microglobulin (median
term results from the
2.6 mg/dl) and normal
Spanish study group
serum Albumin (i.e. ISS
(Abstract # 137: Dr. Joan
Stage I patients).
Bladé) were presented and
Developing new partnerships at the IMF booth at ASH 2003
The Boston results with
included details of a higher
(l-r) Susie Novis, Dr. Brian Durie, Dr. Robert Kyle, and guests
high-dose melphalan for
CR rate in the transplanted group (30%
in the effort to achieve longer survival.
amyloidosis (Abstract # 1651) were pre-
versus 11%: p=0.0002). However, there
As discussed below, several exciting new
sented. Durable remissions and
was no improvement in disease-free or
drug combinations can produce com-
improvement in quality of life were
overall survival with the high-dose ther-
plete remissions (e.g. thalidomide plus
reported for 312/700 (56%) of amyloid
apy. In this case, the results were influ-
melphalan/prednisone; several VEL-
patients treated between 1994 and 2002.
enced by the fact that randomization to
CADETM combinations). The relative
A novel approach to transplant
receive high-dose therapy did not occur
efficacy of autotransplant will now have
was reported from the Mayo Clinic
until after the initial induction
to be assessed either combined with, or
(Abstract # 3656: Dr. Angela Dispenzieri)
chemotherapy was administered and
compared to, these novel therapy com-
utilizing high-dose 153-Samarium EDTMP
response was observed. Randomization
binations. The new question is there-
[QuadrametTM], a bone-targeting radio-
was therefore not on what is called an
fore: Does complete remission
pharmaceutical combined with high-
"intent to treat basis." This excluded
achieved by single or double autotrans-
dose melphalan. Note that this is differ-
poorer-risk patients, which impacts the
plant, thalidomide/dexamethasone com-
ent than Holmium. The addition of the
outcome of the study.
binations, or VELCADETM combina-
high-dose Samarium in a study of 46
So where does all this leave us
tions translate into an equivalent
patients showed promising results. The
right now? Clearly, the decisive role for
remission and/or survival benefit?
radiopharmaceutical was safe and well
transplant as a part of frontline therapy
In Abstract #138 (IFM 9903
tolerated, and very good responses were
is coming into question. Implications
and 9904: Dr. Philippe Moreau) the dis-
from Dr. Barlogie's presentations and
Please see next page
15
appointing interim results (based upon

---

ASH 2003 - continued
Study Group (Abstract #510: Dr.
The numerous presentations of
Meletios Dimopoulos) evaluating pulsed
drugs at the preclinical stage were, as
observed (29% complete remission; 18%
thalidomide therapy combined with
always, hard to evaluate, but the number
very good partial remission; 49% partial
cytoxan and dexamethasone. This study
was impressive and very encouraging. It
remission). Further studies are planned.
of 43 patients showed significant anti-
is important to note that results in the
myeloma activity in previously treated
laboratory with myeloma cell cultures do
NOVEL THERAPIES
myeloma and was associated with less
not necessarily translate into patient
frequent occurrence of peripheral neu-
results, but may do so.
It is hard to encompass all the
ropathy and deep venous thrombosis
One interesting follow-up was a
nuances of the numerous novel therapy
complications than with continuous
prospective, sequential, randomized trial
presentations. The bortezomib (VEL-
thalidomide therapy protocols. Again
(Abstract #832: Dr. Ruben Niesvizky)
CADETM) presentations are summarized
this regimen deserves further evaluation.
from Weill Medical College evaluating
as part of a separate ASH 2003 review.
On a separate topic (Abstract
the role of BiaxinTM combined with low-
The local group in Los Angeles was par-
#508: Dr. Morie Gertz), the results with
dose thalidomide and dexamethasone.
ticularly pleased with the excellent early
rituximab as treatment for Waldenstrom's
This study is showing clear evidence in a
results using VELCADETM as a frontline
Macroglobulinemia were presented.
randomized study that BiaxinTM can aug-
therapy (Abstract # 1650).
This was an ECOG phase II pilot study.
ment the response with dexamethasone
The primary oral session on
Rituximab demonstrated significant
alone and/or with thalidomide.
novel therapies covered Abstracts #507-
activity, producing 52.2% objective plus
#510. The longer- term follow-up results
minor responses in both previously
PROGNOSTIC FACTORS AND STAGING
were presented from IFM study 95-01
untreated and relapsing Waldenstrom's.
involving 489 patients treated with mel-
Other abstracts dealing with
Abstracts #662, #664, #1634,
phalan/prednisone-based or dexametha-
novel therapies which were of particular
#1638, #3491 and #3492 dealt with
sone-based regimens. Interestingly, the
interest included Abstracts #252, #825-
prognostic factors and staging. The new
best outcome, including quality of life,
#832, #1639, #1650, #1653, #1654, #2544,
International Staging System (ISS) for
was simply with melphalan/prednisone,
#3456, and #3492. Just to highlight a few
myeloma was presented (Abstract #664:
which remained the "gold standard" for
aspects, there were follow-up data relat-
Dr. Philip Greipp for the IMF Myeloma
the IFM group in this setting of newly
ed to the several thalidomide analogs:
Working Group).
diagnosed patients 65-75 years of age.
Revimid (#825), Actimid (#829 and
This staging system is the result
However, the greatest attention focused
#3456), and ENMD-0995 [Entremed]
of detailed statistical analysis of over
on Abstract #509, presented by Dr.
(#1654). These new analogs are moving
11,000 myeloma patients from around
Antonio Palumbo for the Torino-based
through clinical trial development with
the world treated with standard or high-
myeloma group. In this study, 56
promising results. The pivotal trials
dose therapy. The system is very simple
patients with newly diagnosed myeloma
with the "lead compound," Revimid, are
to use and worked well for all patient
were treated with melphalan/prednisone
ongoing and will undoubtedly produce
subgroups. It is proposed for widespread
combined with thalidomide 100 mg per
results for submission to the FDA.
use, particularly in the clinical trial set-
day. This protocol was generally well
As discussed elsewhere, there
ting. The Greek Myeloma Study Group
tolerated and produced results substan-
were numerous presentations related to
(Abstract #3492) presented data indi-
tially better than usually observed with
bortezomib (VELCADETM). Perhaps
cating that the new staging system works
melphalan/ prednisone alone. At the
most interesting were the continued
well for their dataset. The MD Anderson
time of presentation, the overall
very promising results with the three-
group (Abstract #3491) also presented
response rate was an amazing 94%,
drug combination of VELCADETM,
supportive data analysis, although for
including 47% having very good partial
thalidomide, plus dexamethasone,
some reason in their analyses, the use of
remission or better.
which is very active in patients with
serum Albumin for their patients identi-
At this point the numbers in
refractory myeloma (Abstract #830). A
fied only a small subset of patients, ver-
this Italian study are small and the follow-
small point was the observation that
sus 31% in the original I.S.S. data set.
up very short. Since time to first pro-
bone alkaline phosphatase (from
They also emphasized the added dis-
gression is a critical endpoint in assess-
osteoblasts) increased in the serum with
crimination of levels of serum ß2
ing therapeutic benefit, some further
successful VELCADETM therapy
microglobulin greater than 5.5 mg/dl
time is required to truly assess these
(Abstract #2544), indicating possible
(i.e. >8, >10, or higher). This trend is
exciting results. The myeloma commu-
reactivation of osteoblasts. There were
also seen in the I.S.S. dataset, but iden-
nity will be "staying tuned" to hear the
several presentations involving arsenic
tifies relatively small high-risk groups.
assessment in 2004. Likewise for an
trioxide (e.g. Abstract #827) and Doxil®
Overall, it is very exciting to have
innovative study from the Greek Myeloma
(e.g. Abstracts #831 and #1653).
available a new, simple, widely
16

---

applicable staging system. The full
London, the interesting point is made
Two studies dealt with Zometa®
implementation of this system will take
that osteoclast activity is increased in
as treatment for myeloma bone disease
time and is discussed elsewhere.
MGUS patients, but is compensated for
(Abstracts #1630 and #2545). In
In Abstract #662, Dr. John
by increased osteoblast activity and
Abtract #1630, by Dr. Iuliano and col-
Shaughnessy and colleagues provided
renewed bone formation. Conversely, in
leagues from Cantazaro, Italy, the radio-
insights into the future of myeloma
active myeloma, osteoblast function is
pharmaceutical Samarium-153 EDTMP
prognostic factor classification and stag-
inhibited by various mechanisms,
was combined with Zometa® as treat-
ing. Using the sophisticated myeloma
including directly (Abstract #1609), via
ment of elderly myeloma patients with
cell gene expression profiling techniques
RANKL, IL-6, and IL-11 (Abstract
progressive, painful bone disease. The
developed at the Arkansas center, a
#1612), and via IL-3 (Abstract #1613).
combination proved to be remarkably
model for prognostic classification using
Abstract #3461 emphasizes the role of
effective with reduction in myeloma M-
three genes was presented. The patterns
bone morphologic protein-2 (BMP-2)
component in some cases. This very
of gene expression were highly predic-
and Wnt antagonists upon osteoblast
interesting observation in eight sympto-
tive. Since this technology is not cur-
inhibition. The osteoblast is a new target
matic refractory patients will undoubt-
rently broadly applicable, this is not pro-
for planned therapeutic interventions.
edly form the basis for further studies. In
posed as a practical staging system. The
Abstract #2511 from ECOG
the other abstract, #2545 from the
information is rather used in reverse
evaluates the impact of polymorphisms
Cleveland Clinic (Dr. Tahir Latif), it
fashion to indicate the bio-
was reassuring to see that
logic importance of these
INTERNATIONAL STAGING SYSTEM (I.S.S.) FOR MULTIPLE MYELOMA
with careful monitoring,
genes in myeloma patho-
there was no increased fre-
genesis and behavior.
STAGE 1
ß2M < 3.5
quency of renal toxicity
Abstract #1634
ALB > 3.5
with Zometa® versus
was an analysis of UK
Aredia® (pamidronate).
(Medical Research Council
STAGE 2
ß2M < 3.5
However, caution was
[MRC]) data from 2,745
ALB < 3.5
clearly indicated with ele-
patients with respect to the
or
vated baseline serum crea-
prognostic significance of
ß2M 3.5 ­ 5.5
tinine levels. Other renal
different types of myeloma.
risk factors also need to be
The major conclusion was
STAGE 3
ß2M > 5.5
proactively assessed.
that Bence-Jones or light
Three abstracts dealt
chain only myeloma
Footnote:
ß2M = serum ß2 microglobulin in mg/dl
with the role of imaging.
patients fared less well with
ALB = serum albumin in g/dl
Abstract #2546 highlight-
long-term follow-up versus
ed the importance of MRI
the IgG and IgA types. Likewise for IgD
of cytokine genes upon overall patient
of the spine in identifying asymptomatic
myeloma, summarized in Abstract
outcome in phase III trial E9486. Of
patients at high risk for disease progres-
#1638. Patients with IgD myeloma and
particular interest, patients with high-
sion. Abstract #3493 from France con-
Bence-Jones myeloma have very similar
producer TNF-alpha phenotype have
firmed the utility of whole body FDG/PET
disease patterns.
the poorest survival. This analysis is
imaging, especially to rule out (or in)
part of a pilot project for the ongoing
any additional myeloma lesions in
LABORATORY-BASED STUDIES OF BIOLOGY
IMF genetic project called Bank On A
patients presenting with apparently
CureTM, discussed in detail elsewhere.
localized disease (e.g. solitary plasmacy-
There were numerous presenta-
The final abstract in this section
toma). Since FDG/PET detects both
tions on this topic, but some of special
(#3467) is the basis for a separate article,
bone and extramedullary disease,
interest were #1609, #1612 - #1614,
entitled "In Search of the Myeloma
Abstract #1656, which identified frequent
#2511, #3461 and #3467.
Stem Cell." (Also in "Myeloma Minute"
extramedullary disease as a pattern of
There was a particular focus on
and "Myeloma Today.")
progression following thalidomide-based
the impact of myeloma upon bone cell
therapies, was of particular relevance.
functions. Several abstracts addressed
CLINICAL STUDIES AND
Monitoring with FDG/PET is therefore
the impact upon osteoblast functions,
DIAGNOSTIC TESTING
particularly important in this setting.
which are inhibited as disease transitions
Abstracts #2547 and #3481
from MGUS (Abstract #1614) to more
Again, there were numerous pre-
dealt with the important role of the
active myeloma (Abstract #1609, #1612,
sentations, but several of note were
serum FREELITETM test for disease mon-
#1613 and #3461). In Abstract #1614
Abstracts #1630, #1656, #2545, #2546,
Please see next page
from the Hammersmith Hospital in
#2547, #3481, #3489, and #3493.
17

---

Additionally, the baseline platelet count
ASH 2003 - continued
centage will likely translate into a
at the initiation of each cycle of therapy
decrease in overall research activity.
itoring. Changes in FREELITETM are
increased over the course of 8 cycles of
Medicare reform may also hold
very helpful for evaluating efficacy of
therapy. The response of blood throm-
some unforeseen surprises for myeloma
high-dose therapy (Abstract #2547:
bopoietin levels associated with the
and cancer patients. The legislation
Arthur Bradwell, Birmingham, UK) and
reduction in platelet counts seen in
President Bush signed into law on
the potential transition from MGUS to
patients on bortezomib was as expected,
December 8, 2003 will limit Medicare
active myeloma (Abstract #3481: Dr.
and was not thought to be related to the
reimbursement for drugs prescribed by
Rajkumar, Mayo Clinic). In the latter
etiology of the thrombocytopenia. This
oncologists by as much as $1 billion per
study, the presence of monoclonal serum
observation in concert with the pro-
year beginning on January 1, 2004.
free light chains by FREELITETM pre-
posed mechanism of action, support the
The leadership of the American
dicted risk of progression from MGUS to
use of bortezomib with appropriate
Society of Clinical Oncology (ASCO),
active myeloma. A final interesting
platelet support even in the context of
commenting on the proposed change
study related to MGUS was Abstract
thrombocytopenia during therapy.
that will take as much as $16 billon out
#3489, indicating a higher than expect-
Finally, Dr. Jagannath evaluated
of the oncology drug reimbursement sys-
ed incidence of secondary cancers
the use of bortezomib among patients
tem over the next ten years, wrote, "The
among patients with MGUS.
with renal insufficiency on the Summit
effect of these very substantial changes
From this rapid review of ASH
and Crest trials. His review demonstrat-
in payment will be significant for cancer
2003, the avalanche of data is clear.
ed that the response rates and toxicities
care in communities across the country.
This overview of the meeting's high-
were similar when compared against
Among other things, we are anxious
lights reveals the amazing progress
patients with normal renal function, and
that these changes will have significant
being made in myeloma research and the
that therapy could be continued without
unintended consequences for cancer
great hopes we all share for new and
dose adjustment or reduction based sole-
clinical trials upon which we all depend
better therapies in the near future. 5
ly upon the renal function. The fre-
for progress against disease for future
quency of missed doses or dose reduction
generations."
A
was similar to the larger population with
Another big issue for the cancer
SK THE EXPERT - continued
normal renal function.
community--coverage for oral cancer
neuropathy during the trials. Patients
There were other studies pre-
drugs--will be included in the prescrip-
who developed more severe neuropathy
sented utilizing in vitro models of
tion drug benefit beginning in January
on study were the ones who entered
myeloma growth and development that
1, 2006. Until then, some patients will
with a greater degree of neuropathy at
addressed the combination of borte-
be allowed to participate in a small, lim-
the onset of therapy. The dose of borte-
zomib with other novel agents. From
ited access pilot program through
zomib was reduced or held in the study
this perspective, it appears that borte-
December 31, 2005. It is currently
for 19% of the patients, and 5% required
zomib works well with other chemother-
unclear how and if off-label drugs such
discontinuation of the drug because of
apies as well as with other targeted mol-
as thalidomide will be covered after
neuropathy. Among the patients with
ecular agents that are in development or
January 1, 2006. 5
neuropathy that developed on study,
currently available. It is now incumbent
74% of the neuropathy resolved back to
upon physicians caring for patients with
baseline over a median of 99 days.
myeloma, as well as myeloma patients
DON WOODWARD - continued
Dr. Lonial and colleagues from
themselves, to enter trials designed to
tries to spend part of her day focusing on
the Winship Cancer Institute and the
evaluate these novel combinations, and
normal things that help her relax and
Summit and Crest investigators, pre-
to help all of us improve the level of
cope with multiple myeloma. 5
sented an analysis of the thrombocy-
care and cure for patients with multiple
topenia seen in the phase II trials of
myeloma. 5
Note: Don Woodward has served on
bortezomib in multiple myeloma. They
the IMF Board of Directors since 1993.
also evaluated the impact of bortezomib
He has graciously made available his
on a platelet growth factor normally
ADVOCACY - continued
telephone number (703-356-4231) to
found in the blood known as throm-
Funding for the National
the readers of this newsletter. He has
bopoietin. Across all patients for which
Cancer Institute (NCI) was set at $4.77
provided hope to countless newly
there was data, there was an average of a
billion, an increase of $170 million or
diagnosed multiple myeloma patients.
60% reduction in the platelet counts
3.5% over last year's funding level.
during the course of therapy which
Currently, NCI funds approximately
rapidly recovered back to baseline dur-
28% of its approved grants. That per-
ing the 10 day rest period of each cycle.
18

---

INTERNATIONA MYELOMA FOUNDATION HONOR ROLL
The IMF thanks all individuals, organizations and corporations who have contributed to IMF programs and
projects. With their generosity and encouragement, we look forward to continuing our commitment to
the myeloma community. This Honor Roll reflects monetary gifts of $250 and above made
between November 1, 2002 and November 30, 2003. We also thank everyone who
has donated time, knowledge, expertise, and products to the IMF.
$10,001 and above
Biking for Bernstein
Carol & Ed Kaplan
Glennie Smith
David J. Brown
The Binding Site
Ernest-Ludwig Kipp
Timothy & Catherine Stepanek
Celgene Corporation
Ron Berenson, M.D.
Stuart Klitsner
Eric Sundt
Chartwell Partnership Group
Marcy Bernstein
Chuck & Pat Koval
Bob & Benetta Tindall
Cytogen Corporation
& Dale Rosen & Family
Robert A. Kyle, MD
Robin & Michael Tuohy
Denver Foundation
Kay Blaney
Brian & Sandra Labadie Trust
Richard & Delores VanWyck
Egan Properties, Inc.
Regina Blanz
William Lauttamus
Victor Family Foundation
Tim & Donna Egan
Rachel J. Bloomfield
Bernard Lichtman
Walk for Bob
Fashions 4 A Cure
Charitable Trust
Kathy Lorenz
James Walsh
George Hoag Family Foundation
Camilla Borisch
Los Angeles Lakers
Ward & Klein, Chartered
Benson & Carol Klein
Joanne Boyle
Bart H. Lowrey
Allan M. & Phyllis Weinstein
J.C. Invitational Golf Tournament
W. Chester Brewer
William & Marilyn Lubel Fund
Suzanne West
Millennium Pharmaceuticals Inc.
Bristol-Myers Squibb Foundation
Helen Luts
Carolyn Wickwire
Musicians Against Myeloma
Martin Browning
Joann K. Malta
John & Joan Williams
NeoRx Corporation
Caledon Real Estate
John Marble
World Reach, Inc.
Novartis Pharmaceuticals
Canon
Julie & William Marler
Jason & Terry Zucker
Ortho Biotech
The Capital Group Companies
Angelo Martinelli
Glen & Teresa Perez
Christmas at the Faire
Richard D. Mase
$501 - $1,000
Jerome & Francoise Pransky
Currie Hair, Skin, & Nails
Charles & Wilma McCarn Estates
107 West Apartments Corp.
Procter & Gamble
Robert Cantor
Laurene McCarthy
Herman & Esther Adler
Walter Benjamin Reinhold
Karen & Steve Chandler
Sheila McIvor
Jules Allen
Estate of Marjorie M. Rutherford
Mr. & Mrs. Barry Chasen
Medtronic
Alpha Kappa Alpha Beta Delta
Bonita Saunders
Louise Chut
John Charles Miller
American Cancer Society
Gary Takata
Marler Clark, LLP PS
Mini Stor
Kenneth Anderson, MD
Vintage Inn
Richard Cloud Letter Campaign
Ms. Leigh Morris
Atlanta Area MM Support Group
Read Warriner
Marcia J. Collins
R. Bruce Mosbacher
Howard Baker
The Winskowski Family
The Community Foundation of
Norfolk Southern
Bruce & Jerra Barit
South Alabama
Thomas O'Kane
Elizabeth & Edward Barrett
$5,001 - $10,000
Complete Post
Morris Orden
Benchmark Management Corp.
Henry & Mary Jane Belber
Laura J. D'Amore
Osteoscreen Ltd.
Mr. & Mrs. Norman Bergeron
Tom & Mary Blakney
Mark & Cat DiCicilia
Jeffrey Pancottine
Melvin Bernhaut
Booz, Allen & Hamilton, Inc.
Gerry & Kristi Difford
Goldman Philanthropic
Joan Biddison
Cell Therapeutics, Inc.
Gordon & Shirley Doble
Partnerships
Mr. & Mrs. Joseph Bolcar
Shirley A. Egan
Dawn Duquaine
Jeff & Linda Peotter
Louis Borick Foundation
Bob & Cindy Feltzin
Bob Ellis
Jodi & Gary Perez
Cindy Bornstein & Family
Geraldine Fineman
Steven Epstein, Esq.
Pinnacle Investments
Philip Bosco, MD
Genta Incorporated
Ralph Ferrizzi Memorial Fund
Preferred Services Group
Boston Acoustics
Janet Johnson & Family
Mabel Burchard Fischer
Races for Richie
Wendy Breslow
Michael Katz
Grant Foundation
Rafael Convalescent Hospital
Charles & Jan Briscoe
LWM Foundation
The Five G's Family Foundation
Cynthia Reich
Ted & Robin Brodie
LWM Golf Tournament
Fleet Matching Gifts Program
Leon H. Rittenberg
Greg & Romi Brozeit
Chuck & Sharon Newman
John & Charlotte Fryling
Donna Haggarty Robbins
Ward & Mari Bukofsky
Ronald Paul
Debbie & Frank Fusco
& David Robbins
Canyon Ranch
Sea Cliff Restaurant
Gap Foundation
Eleanor Rothberg
Carey CPA Disbursements
Richard & Suzanne Saletan
Charles Goldwater
Karen Rothberg
Denise Carmody
Al & Diane Sunshine
The Samuel Goldwin Foundation
Mark Rothman
Jack Carter
Varco Systems
Clifford & LaVonne Graese
"Runing Paris" Marathon
Irma Catlett
Rose & Sherle Wagner
Domenic Guastaferro
San Diego MM Support Group
Beatrice Chaney
Hair Cares
SAP Matching Gift Program
Ronald J. Chappelone
$1,001 - $5,000
A. L. Hanford
Howard F. Ruby Trust
Chinook Northwest, Inc.
Richard & Ronnie Abrams
Mr. & Mrs. Donald W. Harrington
Marc S. Schultz
Karen Chopra
Advanced Storage Technology
Judith Hartig-Osanka
Stacey Schwartz
Hubert Chow, M.D.
Carol & Douglas Bailey
Lynda L. Hermansen
E. Michael D. Scott
Claypool Letter Campaign
Steve & Maggie Bass
Dr. Herbert & Judith Hyman
Seccombe Letter Campaign
Judy Colbert
Susan & Ronald Bean
Heuer Memorial Golf Tournament
R. Michael Shaw
Jane Cole Godin
Beers & Cutler
Harold Itkin
Robert & Coco Siewert
H.J. Cornyn
Bennett Bigelow & Leedom, P.S.
Richard C. Johnson
Keith & Lori Small
Sandra Crane
19

---

Jan Crowl & Family
Suzanne Lussier
Scott & Julie Upham
Paul & Mary Campbell
Laura J. D'Amore
Nancy Maas
WAMP Swim
Alba Canale
& Richard Johnson
John G. Macdonald, Jr.
Steve Weiss
Brett & Michele Canon
Daughters of Penelope -
Carmen MacDougall
Wells Fargo
Cardiogenesis Corp.
Agave Chapter #224
John R. Madden
Bob & Calista Wiebusch
Montauk Rug Carpet
Edwin & Barbara Davenport
Richard Manz
Peter Woll
Walter & Janis Carr
Larry Davis
Al & Denise Martinez
Cynthia Zelnik
Cars For Causes
Gerrianne Delaney
Virginia & Leonard Marx
Michael Cassidy
Edward DellaVecchia
Maxine & Orville McCord
$250 - $500
Thomas Cassidy
Mr. & Mrs. Alvin Dischler
Susan McMillan
Abbott Laboratories
Edmea Cettina
Sharon Dittelman
Duane & Jill Meltzer
Adams Magnetic Products Co.
Kenneth & Merryl Chaitman
Donzplan, LLC
Joseph & Lorraine Merluzzi
Larry & Anna Adams
Linnie Chamberlin
Lisa Doyle
Della & Gerald Meyer, Sr.
Robert & Judy Adeline
Bonny Champagne
Dr. & Mrs. Brian Durie
W. G. Mitchell
Advanced Physical Therapy
Sharath & Shobha Chandra
Leonard & Jill Eliason
Paul & Maureen Monahan
Center, Inc.
Robert & Patricia Chersky
David Entin
Gregory R. Mundy, MD
Shannon Aguiar
Chiliheads of Arizona, Inc.
Charlotte & Harold Feder
Harold Murtha
Pamela Ahlen
Christian A. Johnson
Harold Feld
Paul & Eden Nesse
Nelleke & Jack Aiello
Endeavor Foundation
Steve Fellows
Joseph Nigro
Michael & Randee Albert
Church of St. Philip & James
The L & R Donner Foundation
Donald Olsen Modularm Corp.
Ann Aldrich
Joan Ciampa
Michael & Jean Freed
David & Laura Pair
Margheritta Allardice
Graeme Clark
Robbin Gardiner
Algrid Pakeltis
Irwin & Joan Allen
Janet Clinton
Morie & Marcia Gertz
Patient Accounting Service Center
Catherine Anderson
Jack Cloud
The Glendon Association
Alfred Penhaskashi, D.D.S.
John & Deborah Anderson
Nancy & Howard Cohen
Sue Goldberg
Teresa Lynn Perez
Sheila Bacon
Wendell Cohen
Carol & Steve Goldschein
Robert C. Pew
Sandy Baird
Carol Coller
Mark & Lisa Dobson Gould
Brian Piantedosi
Baker/Merine Family Foundation
Sally & William Collins
Mary Granger
Pilchuck Farms, Inc.
Gena Balsamo
The Comedy and Magic Club of
Roberta Budoff Greenberg
PipeVine Inc.
Nancy Balter
Hermosa Beach
Arnold Greenberg
Ron & Allyson Presta
Stuart Kuritsky & Amy Bard
Peter Connolly
Jennifer & Bud Gruenberg
Rainmaker Group LLC
Bonnie Barit
Troy Dunlap & Sara Conrad
The Guthart Family Foundation
Patricia Redford & Family
Jessica Barrett, MFCC
Mike & Regina Conti
Hackensack U. Medical Center
Betty Ann Rich
Bart Barlogie, MD
Linkshare Corporation
Lee D. Hansen
Larry & Agnes Roberts
Fred Bates
Glenda Cook
Kenneth Harris
Matthew & Sylvana Robinson
Lainie Baxt
Susan & Peter Craig
Lisa Harris
Nancy H. Roggeveen
Joan Beardsley
Beverly & Bill Crawford
James Hayman
Ross University School of
Bruce & Judith Beardwood
Jon & Beverly Cross
Nancy Heuer
Medicine Employees
Henry Becker
Trammell Crow Co.
Norbert & Maxine Hilsberg
Rudd Winery
Russell & Nancy Belinsky
Melvin & Margaret Cruger
Paul & Elaine Hoffman
The San Diego Foundation
Michael B. Bell, CLU
Nick & PK Cucinella
Li Hock Hung
San Gabriel Valley Medical Center
Aaron Belokamen
Jack & Juanita Cunningham
Beth & John Ingham
Jerry & Marcia Sawyer
William Bensinger, M.D.
Jon Gordon Cunningham
Tony & Connie Jacob
Michael, Janine, Lily,
Richard Berkowitz
John Curry
Nancy Jacobs
& Amelia Schueppert
Dave Bernauer
Ellen & Frank Cutney
Sundar & Manjula Jagannath
Schwartz Brothers Restaurants
Brian Berryman, MD
Cost Cutter
Johnson & Johnso Companies
Seymour & Harriet Shapiro
Frederick Bentel & Family
CSE, Inc.
Ashok Kalro
Patricia Sheehan
Beverly Hills Hotel
Kelly & Troy Daniels
Edward H. Kaplan
Dennis Sherwin
Lou & Keith Bilter
Daryl Daugherty,M.D
Leo & Julie Karl
Mel & Sarah Small
L.G. Blanchard
Daughters of Penelope
John & Barbara Kavanagh
Bradley Smith
David B. Bloom, Esq.
Daughters of Penelope ­
Roy V. Keenan
Sonjia Smith
Sam & Barbara Bobrow
Capitol District 3
Nancy Kelsey
Sound Shore Foundation
Arnold & Doris Bodmer
Daughters of Penelope ­
Terry Kelsey
Claire & George Speen
Stacia Bodo
Antiklea
Raymond Ketcham
Constance D. Stankrauff
Frances Boisture
Craig D'Entremont
Richard Kilstrom
Bill & Mary Ellen Stokes
Richard Boverie
Robert De Baun
Ray & Bobbie Klein
Helen Stusser
Maria & Nicolas Bransier
William Deardorff
James Klima
Orrick, Herrington, & Sutcliffe
Ronald Bratti
Johanna & Lucas Dekker
Donna Koebel & Family
Richard & Linda Tarrant
Sandra Brentlinger
Judith A. Delaney
Stuart Kuritsky
Suzanne Taubel & Family
Stephen Briggs
Dorothea Delany & Family
LandAmerica
Louielee Thompson
Robert & Naomi Brofman
Daniel & Mary Delisle
Vitina Lauricella
Roberta Thompson
Barry A. Brooks
Delta Property
Andy & Cathy Lebkuecher
Three Sisters Enterprises, LLC
Helen Brown & Family
Administration Trust II
Mrs. C. S. Ledley
Hollis & Dorothy Tinsler
Douglas & Marjorie Bruce
Brigitte Demes
Shirley Lee
Toronto & District MM
Carl Budding & Co.
David DeRose
Mr. & Mrs. Steve Lerman
Support Group
Regina & William Butler
Digestive Associates of Houston
Joseph & Linda Lerner
Joseph Trudeau
Mike Byrnes
Colleen & Edmund Disanto
Harold & Carol Levine
Robert S. Ukrop
Alice Caldwell, MD
Donald & Jane Dise
Locks of Love
Univ. of Arkansas Foundation Inc.
Gary & Paula Campbell
Helen & Bruce Dixon

---

DMS Production Services, Inc.
Hugh & Della Gray
Russ & Ginny Krodell
National Council for
A.J. Doherty
Paul Grayson
Mark Krueger & Associates, Inc.
Prescription Drug Programs
Jim Donnelly
Mr. & Mrs. Arnold Greenberg
Ladlow's Home Furnishings, Inc.
Jean & Lou Neeb
Elijah Dornstreich
Philip R. Greipp, MD
Carroll & Donna Lam
Newhall Coffee Roasting Co.
Josephine Drennen
Bob & Margaret Gremore
Paul Largay
Steve Newman
Jane Drexler
David Gresens
Mrs. Jamie Larsen
NexCura Inc.
Tom & Esther Droege
Grossberg, Yochelson,
Diana Lassen
Arnold H. Newman
Geoffrey & Catherine Durst
Fox, & Beyda
Charles & Holly Lawe
Richard & Anne Nicholls
Robert & Debra Ekman
Randi Grossman
Lawry's Restaurants
Helen E. Nielsen
Richard Elijah
Maurice Guiney
Robert Laymon
Randy Noble
Emporio State
Jonathan Gustaferro
Ann Lebed
Norseland Incorporated
Federal Credit Union
Guthy - Renker
Howard Lefkowitz
Joan O'Callaghan
Ennis, Knupp & Associates
H. Lee Moffitt Cancer Center
Sabin & Minita Levenson
Maria & Brendan O'Donoghue
Kim Eshaia
& Research Institute
Alan Levine
Gabe Ofiesh
William & Stephanie Esposito
Susan Haaz
Esther Lewinger
Ronald Onkin, MD
Debbie Exner
Alan & Sharron Haber
Drs. Ralph & Melissa Liebling
Ophthalmic Assoc. of Johnstown
Exxon Mobil Foundation
Norm & Ruth Halford
Donna Lipman
Shelley Orr & Todd Swanson
Chuck Farha, Liz Mannix,
Kerry Hamilton
Jan & Gordon Locken
Lyman Ostlund
Jerry McMahon, Jimmy
David S. Hanson, MD
Los Charros Camp
Ellen Overton
Asip, Susan Thalken,
Mark Harrington
Eric Low
Alfredo Paolone
Brian Link, Steve
Thomas Harris
Helena Lozano
Leon C. Parker
Moshier & Trish McKay
Mary & Tom Hartigan
Ramsey G. Ludington
Vernon & Cathy Parkin
Kim Farnsworth
Taleah R. Hartman
Lindsay Luke
Paul, Hastings, Janofsky, & Walker
Ronald Farrell
Jill Hayes
Su & David Lundberg
Sheryl & Jim Paulson
Jeannette Faurot
Jim Hayes
William Lunney Jr., CLU
Karen & Frederick Peiffer
Skip Fein
Richard Head
Reid V. MacDonald
Jutta & Sergio Pensotti
Donald & Jacqueline Feinstein
Sharon Lee Heart
Doris Mack
Petro Extrusion Technologies, Inc.
Huan Feng
Judy & Bob Helbling
Diane Macri
Philadelphia Multiple Myeloma
The Family of Pearl Ferraro
Nira Herrmann
Molly C. Mahoney
Networking Group
Leroy & Doris Ferrell
Michael G. Heuer
John D. Maier
John & Ruth Picard
Ruth & Van Fidino
Hobby Family Foundation
Raich Ende Malter
Bruce Pichoff
Jeffrey Fisch
Judi & Paul Hoggatt
Mammoth Lakes Board of
The "Pig" Barbeque
George & Susan Fischmann
Mrs. Victoria Holdren
Realtors, Inc.
Pink's
Jon & Mary Fisher
Homebuyers Financial Corp.
Richard Manns
Laurence Pitts
Ms. Fisher
Howard Honigfeld
March Madness
Denise Polin
Paula Fisher
Thomas W. Hook
Anthony F. Marioni
Peggy Poling
Don & Carolyn Flatt
Robert & Mary Howey
Mike & Helen Martin
Barbara Pollak
Rafael Fonseca, MD
Mohamad A. Hussein, M.D.
Marx Realty & Improvement
Harold Portnoy, M.D.
Sue & Peter Font
Dominick Huster, M.D.
Donald A. Maslin
Furney Powell
Richard & Donna Font
Ikon Office Solutions
Jeff Mausolf
Positive Promotions
Stan Forman
Ironman Florida Marathon
Ed & Marian Mayo
Lee, Kelly, Austin,
Fox Television
J. Gilbert Footwear
Jack & Sue McAfee
& Ashlynn Powell
Jane Fox
Richard Jacob
Jim McCullough
Samuel Pritz, MD
Dennis Frank
Jamak Fabrication, Inc.
Sarah McEvoy
Philip J. Purcell
Doug Fregolle Promotions
Scott Janisse
Mary-Jane Foster & Jack McGregor
Putnam Investments
Richard A. Friend
Jewish Communal Fund
Danya McIntyre & Family
Eileen Quackenbush
Mike Frische
Ann Marie & Eric Johnson
Raymond McRory, Esq.
Norman S. Radin, Ph.D.
Mr. & Mrs. Joel Fromer
Janet & Dan Johnson
Medifax EDI Pharmacy Services
Glen Radovich
Stephen Fruchter
David & Roberta Johnson
Kathleen Meek-Senyohl
Julie & Jim Raeburn
Gregory Gallagher
Robert Wood Johnson Foundation
Melrose Credit Union
Paul Rehorst
Emilie Gamradt
Ginny Johnston
Martin Mendelsohn D.D.S.
Rudy & Laurie Reich
Mrs. Katherine Garay
Marc & Jackie Kalkoske
Belinda Menendez
R.I.M.S., LLC
John & Judy Gardner
Pat Freed Kandel, Inc.
Richard Merrick
David Richardson
Andree Couteele
Margaret Kane
Merrill Lynch & Co. Foundation
Chris & Holly Rio
& Francoise Gerard
Katz Family Foundation, Inc
Robert Meyer
Sally Rippey
Gregory Giacone
Richard Katz
Jim & Mary Meylor
Robco International Corp.
William B. Gifford
John Kelly, Jr.
Lance C. Migliaccio
Merrill E. Roberts
Hoyl Gill
Edward H. King
Judith Miller
Paul Robertson
Giorgos Kirpizidis Medical Center
Mike & Ginny King
Janet Moore
The Robison Group
David F. Girard-DiCarlo
Gail King
James & Tracy Morgan
Michele Rodriguez
Bradley & Leanne Glassman
Robert Kleber & Friends
Annette Mount
Mae Rondinella
GlaxoSmithKline Foundation
Roberta Klein
Daryl & Marianne Mull
Dr. & Mrs. Nicholas Rose
Lawrence & Andrea Goetz
Alan & Eleanor Kleinberg
Julia Mulligan
Jeffry & Barbara Rosen
Hy Goldberg
Michele Koff
Bernice Murphy
Mr. & Mrs. Rosenblit
Marcie Ann Goldstein
Robert Kopf
David & Anette Musich
Donald Rosenthal
James A Goodrich
Charles Kraft
Jim Mutch
Charles Rotgin, Jr.
M. Keith Goodrich
Gregory & Eileen Kramer
Ted & Linda Myers
Jeff & Carrie Rowell
Robert Granahan
Spencer Krane
Anna Nasello
Robert Ruff

---

Joel & Martha Ruffman
Tara Lucille Skeen
Fred & Carole Taylor
Warner Bros. Int'l Television
Guillermo J. Ruiz-Arguelles, MD
Doug & Eileen Small
TD Options LLC
Warner Bros. Studios
Calvin & Trilby Rumbaugh
Becky Smith
Mike Tegge
Felicia & Perry Weitz
Horry Rumph
Bradley D. Smith
Martha Teichner
Irving L. Wharton
Goerdis Jackson & Sandra Rolston
Hazel Smith
Jess Thacker
Jo Anna White
Rutter, Hobbs & Davidoff
Marie Smith
Daly Thompson
Richard S. Will
Romano Salvatori
Paul Smith
Mary Tigh
Wagner Works
Timothy Sandee
Dorothy Smith-Tinsler
Lawrence Timon
JoAnn & Michael Youngman
Samuel C. Santangelo
Marc Smith
Peter & Anna-Louise Tischler
Marianne Viviano
Martha Sauter & Family
Lorraine & Stephen Snipper
Nina Todd, M.D.
Dr. & Mrs. Robert Vogel
Phillip Savenick
Norma Snyder
Stanimira Todorova
Lee Wade
Tom & Diana Schauer
Bob & Gail Solomon
Philip & Mary Anne Toms
Walden University, Inc.
Patricia C. Schemm
Cathy Cyphers Soref
Desilu Too, L.L.C
Pam & Peter Walker
Sharon High School
Nancy Sorrenti
Carl Toriello & Corporate
Sharon Walker
Paul & Hope Schroy
Cheryl Spiese
Lending Group, NY
Fred & Sarajane Wallace
Yuriko & Holger Schubert
David Spitulnik
Kim Turner State Comp Ins Fund
Harry Ward, M.D.
Joseph Schwarz
Anne Stafford
Tynan Family
James A. Waters
Mr. & Mrs. Truman Sechrist
Regina & David Stasiak
UFCW Union Local #324
Peter & Marcia Webber
Mitchell Semel
Robert Steeneck
Alan & Jeannie Ufland
Mr. & Mrs. Alan Weiskopf
Fran & Phil Shannon
Joe & Gladys Steinberg
Mark Unatin Raffle
Charles & Lynne Weiss
David & Rosemary Shea
The Stern Family Foundation
Universal Studios
Fred & Sheila Wilson
William & Betty Shelton
Steve Sternberg
Rachel Unkefer
Edward Wishner
Pat Shure
Evelyn M. Stock
Robin Vail
The WMY Fund
Charles & Rowena Simberg
Enid Stone
Peter Valko
Caroline H. Wolf
Robert & Elaine Sims
Marvin J. Stone, M.D.
Kathy & Jerry Valenta
Robert D. Working
William & Nancy Silver
Brad Stone
Happy Vasil
Lane Wyman
Jayesh Mehta, MD & Seema
Stony Creek Elementary
Jeff Lewis & Elizabeth Vendely
Alfred & Frances Ybarra
Singhal, MD
Eric Strand & Jennifer Smith
Verizon Logistics Management
Richard Zien
Dr. Martin & Cecelia Singer
Frank & Judith Sunberg
Arie & Wilhelmina Verhagen
Judy Zoghby
Dan & Carolyn Sissom
Leslie Swackhamer
Vivendi Universal US Holding Co.
Lucille & Meyer Zonis
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