2007 IMF Calendar of Events
Aug 17­19 Nurse Leadership Board (NLB) Retreat ­ Santa Monica, CA
22 IMF Patient & Family Seminar ­ Barcelona, SPAIN
27 Concert for a Cause ­ Avalon, Hol ywood, CA
26­27 P&F Seminar ­ Heidleberg, GERMANY
Sept 14 IMF Patient & Family Seminar ­ Paris, FRANCE
Nov 2­3 IMF Patient & Family Seminar ­ Tampa/St. Petersburg, FL
15
Greater Kansas City Symposium ­ Kansas City, MO
9­11 Eastern Cooperative Oncology Group (ECOG) semi-annual meeting ­
21
IMF Patient & Family Seminar ­ Rome, ITALY
Ft. Lauderdale, FL
26
IMF Clinical Conference ­ St. Petersburg, RUSSIA
10
IMF Annual Gala ­ Peter Boyle Event ­ Wilshire Ebel Theatre, Los Angeles, CA
Oct 3­7 Southwest Oncology Group (SWOG) semi-annual meeting ­ Huntington Beach, CA
10
3rd Annual Southwest Symposium ­ Tempe, AZ
18­20 Lymphoma & Myeloma Conference ­ New York, NY
17
IMF Regional Community Workshop ­ Bergish-Gladback, GERMANY
20 IMF Clinical Conference ­ Beijing, CHINA
19
IMF Regional Community Workshop ­ Berlin, GERMANY
21­27 Multiple Myeloma Awareness Week
Dec 8­11 American Society of Hematology (ASH) annual meeting ­ Atlanta, GA
Other events/meetings wil be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or cal 800-452-CURE (2873).
IMF­Latin America, IMF­Japan and IMF­Israel events are not included above.
SAVE THE DATE!
The IMF Annual Gala
Celebrating Peter Boyle...
An Evening of Comedy & Music
with his Friends and Family
featuring:
Ray Romano,
Patricia Heaton, Doris Roberts
and Fred Willard as MC
Additional guest performers to be announced soon!
Check the IMF website for updates!
Saturday, November 10, 2007
Wilshire Ebell Theater and Club
Los Angeles, CA
Tickets: $350 per person
Benefitting the Peter Boyle Memorial Fund
at the International Myeloma Foundation
For sponsorship opportunities or more information,
please call Heather Cooper Ortner at (818) 487-7455
International Myeloma Foundation
NON-PROFIT
12650 Riverside Drive, Suite 206
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
U.S.A.
www.myeloma.org
PAID
N. Hollywood, CA
(800) 452-CURE (2873)
Foundation
PERMIT NO. 665
Change Service Requested
yelomaM
See the IMF website for more information.
International
©2007,
U.S.A.in
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Printed

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Myeloma
Today Summer2007
Volume 7 Number 3
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Scientific & Clinical News
Profiles in the News
Also in this issue...
Prof. Pieter Sonneveld discuss-
E. Michael D. Scott, who joined n Dear Reader by IMF president
es the founding, and past and
the IMF Board of Directors in
Susie Novis PAGE 3
present activities of HOVON, the
1995 talks about the activities of
n Letters to the IMF PAGE 3
Dutch-Belgian Hemato-Oncology
the IMF and its Board, and shares
n Nurse Leadership Board
Group. Upcoming projects
his thoughts about the patient
activities update PAGE 11
include continued participation
advocacy community and today's
in the Bank On A Cure® research initiative. PAGE 4
oncology marketplace. PAGE 9
n Support Group Leaders Retreat recap from
a participant PAGE 14
Dr. Brian G.M. Durie shares
Clyde Corales, a myeloma patient n The IMF Myeloma Mobile may be coming to
the myeloma-relevant news
and avid cyclist, shares the story
your area PAGE 15
from the recent 12th Congress
of how cycling helped him to fall
of the European Hematology
in love with life all over again
Association (EHA), held in early
after his diagnosis. Clyde par-
June in Austria, and the 11th
ticipates in bike rides to spread
International Myeloma Workshop (IMW), held in
myeloma awareness and education. PAGE 18
late June in Greece. PAGE 5
n Spotlight on Advocacy ­ President Bush's 2008
Carol Klein and
Dr. Asher A. Chanan-Khan
budget cuts PAGE 15
Nancy
Moses,
explains the mechanism of action
whose husbands
n International Affiliates, an update from the
of mapatumumab, a new can-
are living with
director of IMF Europe PAGE 16
cer therapy currently in devel-
myeloma, teamed
n Support Groups from Minnesota and California
opment. This novel agent has
up to give back
share their stories PAGE 17
significant potential for the treat-
to the myeloma community by spreading myeloma
n IMFers raise funds to benefit the myeloma
ment of a broad range of human malignancies,
awareness while successfully raising funds for a
community PAGE 20
including myeloma. PAGE 7
myeloma research grant. PAGE 19
n News & Notes PAGE 21
Michael S. Katz offers an overview
Supportive Care
n Calendar of events BACK COVER
of the first meeting of the newly
n Save the Date! Join us for two very special
formed U.S. Myeloma Forum, a
Deborah Doss RN, OCN, discusses
events BACK COVER
committee of the nation's leading
thromboembolic events (TE),
myeloma experts recently estab-
a potential side effect for patients
lished by the IMF. Mike attended
with hematologic malignancies,
the meeting as a patient representative. PAGE 8
especially myeloma. PAGE 12
Looking for a LocaL
Special Announcement
myeLoma
support group?
Dr. Robert A. Kyle, IMF Director Meet the IMF Hotline Coordinators who answer
and Scientific Advisory Board
your questions and emails, and help you address the
If you are interested in joining
Chair, receives the prestigious
various aspects
an existing group please access the
2007 David A. Karnofsky Memorial
of myeloma in a
website at www.myeloma.org
Award from the American Society
more informed
"Finding Support"
of Clinical Oncology (ASCO). This
way. PAGE 13
or call the IMF
award honors him as a researcher whose work has
at 800-452-CURE (2873).
changed the practice of clinical oncology. PAGE 22
This issue of Myeloma Today is supported by Celgene Corporation, Mil ennium Pharmaceuticals, and Ortho Biotech.

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International Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Benson Klein
Dr. Edith Mitchell
Susie Novis
E. Michael D. Scott
Michael B. Bell
Dr. Robert A. Kyle
Dr. Gregory R. Mundy
Matthew Robinson
R. Michael Shaw
Mark DiCicilia
Isabelle Lousada
Charles Newman
Richard H. Saletan
Igor Sill
Michael S. Katz
Allan Weinstein
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Daniel Bergsagel, CANADA
Ian Franklin, SCOTLAND
Ian MacLennan, ENGLAND
Y.C. Chen, REPUBLIC OF CHINA
Tadamitsu Kishimoto, JAPAN
James S. Malpas, ENGLAND
Scientific Advisors
Raymond Alexanian, USA
Rafael Fonseca, USA
Linda Pilarski, CANADA
Kenneth C. Anderson, USA
Gösta Gahrton, SWEDEN
Raymond Powles, ENGLAND
Michel Attal, FRANCE
Morie A. Gertz, USA
S. Vincent Rajkumar, USA
Hervé Avet-Loiseau, FRANCE
John Gibson, AUSTRALIA
Paul Richardson, USA
Dalsu Baris, USA
Hartmut Goldschmidt, GERMANY
Angelina Rodríguez Morales, VENEZUELA
Bart Barlogie, USA
Jean-Luc Harousseau, FRANCE
Donna Reece, CANADA
Régis Bataille, FRANCE
Joyce Ho, AUSTRALIA
David Roodman, USA
Meral Beksac, TURKEY
Vania Hungria, BRAZIL
Jesús San Miguel, SPAIN
William Bensinger, USA
Sundar Jagannath, USA
Orhan Sezer, GERMANY
James R. Berenson, USA
Douglas Joshua, AUSTRALIA
Kazuyuki Shimizu, JAPAN
Leif Bergsagel, USA
Michio M. Kawano, JAPAN
Chaim Shustik, CANADA
Joan Bladé, SPAIN
Henk M. Lokhorst, THE NETHERLANDS
David Siegel, USA
Mario Boccadoro, ITALY
Heinz Ludwig, AUSTRIA
Seema Singhal, USA
J. Anthony Child, ENGLAND
Jayesh Mehta, USA
Alan Solomon, USA
Raymond L. Comenzo, USA
Håkan Mellstedt, SWEDEN
Pieter Sonneveld, THE NETHERLANDS
John Crowley, USA
Giampaolo Merlini, ITALY
Andrew Spencer, AUSTRALIA
Franco Dammacco, ITALY
Gareth Morgan, ENGLAND
A. Keith Stewart, USA
Faith Davies, ENGLAND
Gregory R. Mundy, USA
Guido J. Tricot, USA
Meletios A. Dimopoulos, GREECE
Amara Nouel, VENEZUELA
Benjamin Van Camp, BELGIUM
Brian G.M. Durie, USA
Martin M. Oken, USA
Brian Van Ness, USA
Hermann Einsele, GERMANY
Antonio Palumbo, ITALY
David Vesole, USA
Dorotea Fantl, ARGENTINA
Jan Westin, SWEDEN
Headquarters
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607-3421 U.S.A.
Tel: 818-487-7455 or 800-452-CURE (2873)
Fax: 818-487-7454 E-mail: TheIMF@myeloma.org Website: www.myeloma.org
IMF Staff
Executive Director
Senior Vice President, Strategic Planning
Vice President, Development
David Smith (dsmith@myeloma.org)
Diane Moran (dmoran@myeloma.org)
Heather Cooper Ortner (hortner@myeloma.org)
Special Outreach Coordinator
Meeting & Event Services
Development Associate
Arin Assero (aassero@myeloma.org)
Spencer Howard (showard@myeloma.org)
Randi Liberman (rliberman@myeloma.org)
Development Associate
Publications Editor
Data Specialist
Suzanne Battaglia (sbattaglia@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
Colleen McGonigle (cmcgonigle@myeloma.org)
Hotline Coordinator
Executive Assistant
Publication Design
Nancy Baxter (nbaxter@myeloma.org)
Nancy Kennedy (nkennedy@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Hotline Coordinator
Development Assistant
Director, Medical Meetings & CME Programs
Debbie Birns (dbirns@myeloma.org)
Missy Klepetar (mklepetar@myeloma.org)
Lisa Paik (lpaik@myeloma.org)
Director, IMF Europe
Regional Director, Support Groups Southeast
Webmaster
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Andrew Lebkuecher (imfsupport@charter.net)
Abbie Rich (arich@myeloma.org)
Director, Support Groups Outreach
Specialty Member Services Coordinator
Comptroller
Kelly Cox (kcox@myeloma.org)
Kemo Lee (klee@myeloma.org)
Jennifer Scarne (jscarne@myeloma.org)
Hotline Coordinator
Database & Inventory Control
Regional Director, Support Groups Northeast
Paul Hewitt (phewitt@myeloma.org)
Macky Lee (mlee@myeloma.org)
Robin Tuohy (tuohy@snet.net)

www.myeloma.org

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P
Internationallaceholder
Myeloma Foundation
Dear Reader,
TheInternationalMyelomaFoundation
the stage for Dr. Kyle's award pre-
was proud to present the 5th Robert
sentation and a few surprises for
A. Kyle Lifetime Achievement Award
the evening.
to Prof. Dr. Heinz Ludwig. This award
was established in 2003 and honors
Since Vienna is known for music,
the physician whose lifetime body
we were not disappointed, as we
of work best exemplifies compassion
were treated to a short concert pre-
for myeloma patients and a singular
formed by members of the Vienna
dedication to the treatment of their
Philharmonic Orchestra.
disease. Prof. Ludwig was presented
Prof. Ludwig was in for a big sur-
with this honor in recognition of his
prise as his two children, Claudia
work in medical hematology-oncology Heinz Ludwig with Susie Novis, Robert Kyle, Birgit Ludwig, and Brian Durie and Michael, presented a video they
and, in particular, multiple myeloma.
had prepared depicting milestones
in their father's life, all set to music. The video was aptly titled "Heinz H to
The event took place in Vienna, Austria, on June 7, 2007, at the historic
Z," and they had chosen the most perfect photographs showing Heinz in
and beautiful Vienna Kursalon, famous for providing an exquisite venue
various stages throughout his life ­ as a young boy, as a sportsman, during
for classical concerts, operas, and musicals. Historic Vienna is one of the
his medical career, as a family man, and mostly as a man who truly loves
most beautiful cities in the world, renowned for music, art, architecture,
his wife, his family, and life! He was completely surprised and enjoyed
and the famous Lipizzaner horses. It is also where Prof. Ludwig lives
every moment of it, as did we all.
and works. He is Director of the Department of Medicine I, Center of
Oncology and Hematology at Wilheminenspital, Vienna.
Next was the moment we'd all been waiting for, Dr. Kyle's presentation
of the award to Dr. Ludwig. Dr. Kyle took the stage and told the audi-
There was some anxiety about our desire to take advantage of the lovely
ence why Prof. Ludwig was receiving the award, recapping his numerous
park scenery and hold the event outside, because the skies would darken
accomplishments. Then the stage belonged to Prof. Ludwig who, in his
and it would pour in the evenings preceding the event. So a decision was
very elegant and eloquent manner, thanked everyone and acknowledged
made to set up inside. However, on the evening of the event, the weather-
several people in the audience.
man made his prediction ­ it would not rain. As luck would have it, he
was right. At the last minute, the tables were moved outside and, by the
Once again, music became the night, as two outstanding opera singers
time the first guests arrived, the setting was perfect.
took the stage as we sat under the stars, entranced, moved, and thor-
oughly entertained by the magic and the beauty of their voices.
The evening began with a lovely cocktail hour, sipping drinks and min-
gling under a clear sky on the fringe of the beautiful park, meeting old
The evening ended with the most fantastic dessert buffet, lest we forget
friends and making new ones. Everyone was in high spirits, thrilled that
that Vienna is also known for its pastries. So throwing caution to the wind,
Prof. Ludwig was being honored. The atmosphere lent itself to creating a
we had to sample all that was offered, and thus the evening ended on a
magical evening.
very sweet note.
As soon as everyone was seated, the program began with a very heartfelt
Warm regards,
welcome from Dr. Brian Durie, congratulating Prof. Ludwig and setting
Susie Novis
Letters to the IMF
IMF Patient & Family Seminars
programs make a difference, especially in the winter and summer months.
I have been to probably at least eight IMF Patient & Family Seminars, and
I would be surprised if most utility companies across the country don't
they have been absolutely worth it. I recommend both the Friday and
have similar programs, so please pass this information along to other
Saturday sessions. You get to learn a lot, meet other patients, and talk to
myeloma patients. Thank you for supporting all of us and for the fine job
myeloma specialist up-close. And Susie Novis and Dr. Brian Durie are very
you do.
approachable. My oncologist joined me and another myeloma patient at
Eric Vogt
one of these seminars, and he commented that he learned more than at
IMF Hotline
most medical conferences he attends.
You guys are the best! You have given me hope and confidence, and for
Charles Hill
that you should sit back and take a little credit. I sure do appreciate your
Savings for Patients
business-like approach, your dedication, and your attitude. You and the
I recently learned that both my local electricity and gas utilities companies
IMF have become valuable extensions to my own oncology team, and this
have a Medical Assistance Program. A compromised immune system is
is very reassuring. Indeed, now that I'm an "old timer" in the world of
one of the factors that receive approval for a permanent reduction in util-
myeloma, I value your activities even more. My compliments!
ity costs. Multiple myeloma folks have extraordinary expenses, and such
Robert Scott
800-45-CURE(87)

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Scientific & Clinical
HoVon: tHe DutcH-BeLgian Hemato-oncoLogy group
Myeloma Today in conversation with Prof. Pieter Sonneveld
Please tell us about the origins of HOVON.
What is the current focus of your research?
HOVON, the Dutch Hemato-Oncology Group,
Primarily, my group is focusing on the use of bortezo-
was founded in 1981. Our goal at that time was to
mib and on defining prognostic subgroups for bortezo-
set up clinical studies in leukemia. Shortly there-
mib. In terms of the primary endpoints of next genera-
after, the group expanded its activities to clinical
tion HOVON clinical trials in myeloma, we will focus on
studies in lymphoma and multiple myeloma.
novel drugs added to established treatment; the evalu-
When members from Belgium began to join the
ation of pharmacogenomic, molecular, and epigenetic
cooperative, HOVON started being referred to
factors; definitions of disease-related risk profiles and
as the Dutch-Belgian Hemato-Oncology Group.
of treatment-related risk profiles; and the development
Within HOVON, there are three major working
of tailored treatment for prognostic subgroups based
groups ­ leukemia, lymphoma, and myeloma.
on the availability of novel targeted treatments.
The Myeloma Working Party consists of hema-
How is HOVON involved with the IMF's Bank On A
tologists from all the major centers in Holland
Cure® research initiative?
and Belgium. It is co-chaired by me and Dr. Henk
Lokhorst, who also chairs the HOVON group
The first analysis of thrombosis (blood clots) in patients
overall.
who use thalidomide was performed by Dr. Gareth
Morgan (Royal Marsden Hospital, London, UK) on data
What have been some of the historically
from HOVON and from the US. In December of 2006,
significant HOVON trials in myeloma?
Pieter Sonneveld, MD, PhD
a presentation was made at the annual meeting of the
University Hospital Rotterdam - Dijkzlgt
In the early 1990s, there was a Phase II HOVON
American Society of Hematology (ASH) identifying
Rotterdam, the Nederlands
clinical study on the use of high-dose melphalan
genetic pathways that may explain why some patients
therapy in myeloma. From this, we developed the Phase III trial known
suffer from blood clots when undergoing treatment with thalidomide
as HOVON 24, which compared single and double intensive treatments
for myeloma. This may shed new light on individual differences in the
[autologous stem cell transplantation] in previously untreated patients
response to cancer and its treatment, and may lead to the development
with myeloma. The first analysis was performed in 2002, and the study
of screening techniques and tailored interventions to prevent these side
was published in Blood in 2003. Final analysis was performed in 2006,
effects. Genes involved with drug metabolism, DNA repair, and inflamma-
with the update set to be published in 2007 in Haematologica, the offi-
tion have been identified as predictors of which patients are more likely
cial journal of the European Hematology Association (EHA). We have also
to experience venous thromboembolism (VTE).
conducted studies in allogeneic transplantation and, in 2003, the Journal
HOVON's next Bank On A Cure project is a comparison of patients
of Clinical Oncology published the results from a prospective comparison
responding to bortezomib. This study will be performed at our center
of patients treated in the Phase III HOVON 24 study.
in the second half of 2007, in cooperation with Dr. Morgan and the
What can you share with our readers about recent and current
Heidelberg, Germany myeloma group, using data from the HOVON 65
HOVON activities?
trial. In HOVON 65, we are collecting and purifying stem cells, and using
The Myeloma Working Party recently finished the HOVON 50 prospective
the Bank On A Cure custom single nucleotide polymorphism (SNP) chip
trial to determine the effect of thalidomide prior to, and as maintenance
for analysis of gene expression signatures identifying response to bortezo-
following, high-dose therapy with autologous transplant for newly
mib, thalidomide, and high-dose melphalan. The goals of additional bio-
diagnosed myeloma patients. We compared induction regimens of VAD
logical studies include analysis of the role of genetic polymorphisms (on
(vincristine, doxorubicin, and dexamethasone) with TAD (thalidomide,
metabolism, bone disease, thrombosis, polyneuropathy, and myeloma).
doxorubicin, and dexamethasone), followed by peripheral blood stem
Are you presenting at the International Myeloma Workshop in Greece?
cell (PBSC) collection and transplantation. This Phase III multi-center
Yes. We will be making several presentations, including the results of the
study was conducted in cooperation with the German-speaking Myeloma
HOVON 50 study, data on the risk of thrombosis and neutropenia associ-
Multi-center Group (GMMG) and involved 1150 myeloma patients. It is
ated with the use of lenalidomide, recent achievements of the European
too early to analyze survival rates, but we have already analyzed response.
Myeloma Network, as well as preclinical data from our group on the purifi-
Engraftment after transplantation showed no difference between TAD and
cation steps that can be used prior to the single nucleotide polymorphism
VAD groups, and we concluded that thalidomide as part of induction is
(SNP) analysis. We will also present a paper on gene expression profiling.
associated with better response rates. TAD is far more effective in achiev-
ing complete remission (CR) or very good partial response (VGPR).
What is your overall outlook for the myeloma community?
We recently finished HOVON 49, a prospective Phase III clinical trial in
It is very favorable. At our institution, we are conducting multiple early
elderly patients comparing frontline therapy of melphalan plus predni-
phase trials of promising agents, like next generation proteasome inhibi-
sone (MP) with MP plus thalidomide (MPT). The results of that study
tors and kinase inhibitors, that should soon find clinical use. As for thera-
are being analyzed at this time. Currently, HOVON has a number of
pies currently available to patients, there are several novel agents that are
ongoing clinical trials, including one with bortezomib (VELCADE®) for
producing lots of good responses and, in my opinion, should be part of all
induction prior to high-dose melphalan in myeloma patients over age
induction therapies. And, at relapse, it is now possible to use a combina-
65, plus another trial (HOVON 65) that compares bortezomib versus tha-
tion of novel and conventional agents to achieve good results. There are
lidomide as maintenance. HOVON 85 will compare MPT to lenalidomide
many positive developments in the field that should give patients hope
(REVLIMID®) added to standard MP (RMP) in the elderly patient.
when facing this disease mt
4
www.myeloma.org

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Scientific & ClinicaL
upDates from recent scientific & cLinicaL conferences
Myeloma Today in conversation with Dr. Brian G.M. Durie
What can you tell us about presentations made
agent. All of the study patients had very advanced
at the recent EHA meeting?
disease. The study dosage was well-tolerated, with
There were several important presentations at
no neuropathy side effects.
the 12th Congress of the European Hematology
Joan Bladé (Hospital Clinic, Barcelona, Spain) pre-
Association (EHA), which was held in early June in
sented data from the PETHEMA study of high-dose
Vienna, Austria. The Italian study about mini-al o-
therapy (HDT), including tandem stem cell trans-
geneic transplants, which has already been pub-
plant, in primary refractory myeloma. Dr. Bladé
lished in The New England Journal of Medicine,
showed that, provided the patient does not have
was presented at the meeting by Mario Boccadoro
progressive disease, the outcome with different
(University of Medicine, Torino, Italy). This very
levels of response is the same. Several researchers
interesting but controversial study showed that
have evaluated if there is a difference in the outcome
double autologous transplantation was not as effec-
for patients with CR (complete response) compared
tive as one autologous transplant plus one mini-
with patients who achieved VGPR (very good partial
allogeneic transplant. These findings are currently
response) or other response levels. In the Spanish
being actively discussed. (NEJM June 21, 2007: 356;
study, there was no difference.
2646-2648). The main issues are: Is the mini-al o
treatment really better than double auto transplant?
How are the responses being evaluated?
Brian G.M. Durie, MD
Is the graft versus host disease a major deterrent?
Currently, there is a strong trend to use the pub-
Aptium Oncology
Will the introduction of novel therapies provide Cedars-Sinai Comprehensive Cancer Center lished New International Uniform Response Criteria
greater benefit than mini-allo with lesser toxicities?
Los Angeles, California
for Myeloma. However, in assessing the above men-
tioned study, Dr. Bladé used the European Blood
Antonio Palumbo (University of Torino, Italy) presented the updates
and Bone Marrow Transplantation (EBMT) criteria as modified by the new
on MPT (melphalan, prednisone, thalidomide) and MPR (melphalan,
response criteria. In the EBMT criteria, response is documented with two
prednisone, REVLIMID®) for the non-transplant myeloma patient. The
readings six weeks apart, or the response must be listed as "unconfirmed."
results with MPR were very good, and it appears that the MPR regimen
This means that in the older studies which used the EBMT criteria, approx-
might replace MPT in the same way that REVLIMID plus dexamethasone
imately 10% of patients could not be evaluated because their protein level
has replaced thalidomide plus dexamethasone. Dr. Palumbo also showed
could not be re-checked six weeks later. Removing data for 10% of the trial
that MPR overcomes the negative impact of abnormal chromosomes.
patients from the study can have a major impact on the results. The new
With MPR, the outcome for patients with chromosome 13 deletion and
criteria simply requires two reading to make sure that a mistake has not
translocation 4; 14 was the same as for patients without such abnormali-
been made, but one does not need to wait six weeks to re-check protein
ties. These excellent MPR results conflict with the "risk-adapted strategy"
levels. This enhances the ability to assess response.
technique published by the Mayo Clinic team, whereby patients should be
treated based on chromosome results. The MPR works well for both good
Thank you. What about the presentations made at the International
risk and bad risk patients.
Myeloma Workshop?
Other controversial presentations at EHA were those made by Pieter
There were several interesting presentations made at this bi-annual meet-
Sonneveld (University Hospital Rotterdam, Dijkzlgt, the Nederlands) and
ing, which took place is Kos, Greece, June 25­30. In the pathophysiology
by Jean-Luc Harousseau (Institute of Biology, Nantes, France). Their work
section, there was an interesting discussion of possible new agents for
has shown that VELCADE® plus DOXIL® results in a three-month longer
treating myeloma bone disease. In the genetics section, there was an
response duration than VELCADE alone. A similar US study was sufficient
overview of the molecular classification of myeloma presented by John
to obtain FDA approval for the combination treatment. However, there is
Shaughnessy (Myeloma Institute for Research and Therapy, Little Rock,
remaining controversy as to the relative clinical value of this modest sur-
AR), prognostic implications of FISH karyotyping was presented by Hervé
vival benefit with VELCADE plus DOXIL. Dr. Sonneveld performed a subset
Avet-Loiseau (Institute of Biology, Nantes, France), and single nucleotide
analysis looking at whether or not the patients who had previously received
polymorphism (SNP) models in myeloma from the Bank On A Cure®
thalidomide, and he showed that prior thalidomide does not detract from
addresses by project co-director Brian Van Ness (University of Minnesota,
the outcome, while the survival remains the same. Using the same data, Dr.
Minneapolis, MN).
Harousseau showed that, with longer follow-up, there is a significant but
What progress has been made of late with Bank On A Cure?
modest survival benefit overall with the combination therapy.
There are a couple of interesting updates to report. Both Pieter Sonneveld
Keith Stewart (Mayo Clinic, Scottsdale, AZ) presented results of the
and Hervé Avet-Loiseau now have the equipment in their labs sufficient
Phase I/II study of the new proteasome inhibitor carfilzomib (PR-171)
to do the testing for the Bank On A Cure research project. The IMF is
in myeloma and Waldenström's macroglobulinemia. In his early testing,
providing the customized chips necessary for them to do their studies.
Dr. Stewart showed that four out of 20 patients responded to the new
Continues on Page 6
800-45-CURE(87)
5

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Scientific & Clinical
BRIAN G.M. DURIE -- continued from page 5
This means that the Bank On A Cure research being done has expanded
for Research and Therapy, Little Rock, Arkansas) and Jean-Paul Fermand
from two labs to four labs. Work will now proceed in the US, the UK, the
(Hospital Saint-Louis, Paris, France) on whether autologous transplant
Netherlands, and France.
should be part of the primary treatment in myeloma, with Dr. Barlogie
speaking for the affirmative and Dr. Ferman for the negative. Previosly,
That's great news. Now let's go back to the Kos presentations.
Dr. Fermand had presented results of his large, randomized trial compar-
In the novel treatments section of the International Myeloma Workshop,
ing upfront transplants to delayed transplants at relapse, with the survival
Paul Richardson (Dana-Farber Cancer Institute, Boston, MA) discussed the
benefit being the same for both scenarios.
impact of VELCADE-based combination treatments on relapsed and refrac-
tory myeloma, Donna Weber (M.D. Anderson Cancer Center, Houston,
Did you present at the International Myeloma Workshop?
TX) talked about REVLIMID-based combination treatments for relapsed or
Yes. I presented the Bank On A Cure bone SNP data. Also, in the clos-
refractory disease, Dharminder Chauhan (Dana-Farber Cancer Institute)
ing symposium, which focused on current and future perspectives in
covered the next generation of proteasome inhibitors as therapy in myelo-
myeloma, I presented on the importance of the new and evolving uniform
ma, and Constantine Mitsiades (Dana-Farber Cancer Institute) presented
response criteria response criteria and how this is changing the way we
on the anti-myeloma activity of heat shock protein-90 inhibition.
are structuring all of our protocols for myeloma. As part of the same
session, Jesus San Miguel (University Clinic Hospital, Salamanca, Spain)
In the area of frontline treatment of myeloma, there are a number of
discussed how novel agents are individualizing the treatment of myeloma,
questions that still need to be answered. Which of the different frontline
Pieter Sonneveld shared plans for European myeloma studies, and Ken
therapies are best for the approximately 20% of myeloma patients who
Anderson (Dana-Farber Cancer Institute) concluded the symposium with
are planning to proceed to stem cell transplantation? And what is the pre-
his predictions for the future.
ferred frontline therapy for the approximately 80% of myeloma patients
who do not proceed to transplant? At present, one of the leading candi-
What does the future look like?
dates in the first category is the combination of REVLIMID plus low-dose
This is a very exciting time in the field of myeloma. Never before has so
dexamethasone. In the second category, we are looking at a number of
much progress been made in this disease within a relatively short time.
VELCADE-based regimens, as well as MPT and MPR.
There is much work ahead, and there are many clinicians and researchers
applying themselves toward a greater understanding of myeloma. In the
Is there still a place for high-dose therapy?
meantime, the outlook for patients is continuing to improve. I hope that
The medical community is currently re-assessing stem cell transplants.
this brief overview will give readers of Myeloma Today the sense of just
There were a number of presentations made at the International Myeloma
how much is currently going on in the effort to improve the length and
Workshop that focused on optimizing stem cell transplantation, single
quality of life of myeloma patients. Some of the studies I have mentioned
vs. double autologous transplants, allogeneic transplants, analysis of
warrant follow-up in the future issues of this newsletter, and we will be
prognostic factor, and post-transplant strategies after allografting. Also
bringing more comprehensive discussions of those topics to our readers.
on the program was a debate between Bart Barlogie (Myeloma Institute
Please stay tuned. mt
We speak
your language
The IMF publishes a comprehensive
library of informative myeloma
resources. Used by patients, caregivers,
healthcare professionals, and anyone
needing a reliable source
of up-to-date information
regarding the disease,
these publications
are critical to a better
understanding of
myeloma.

www.myeloma.org

---

Scientific & Clinical
mapatumumaB: a new cancer tHerapy in DeVeLopment
Myeloma Today in conversation with Dr. Asher A. Chanan-Khan
What is your background in myeloma?
intravenously every 21 days at doses up to 10 mg/
I have worked in the field of multiple myeloma for
kg, and was capable of producing clinical respons-
the past seven years. Currently, I lead the clinical
es when administered as monotherapy in patients
and translational research efforts in myeloma at the
with advanced non-Hodgkin's lymphoma.
Roswell Park Cancer Institute. My research inter-
What about the study of mapatumumab in
ests include the development of novel therapies
myeloma?
to treat this disease. I was involved in the develop-
The results of preclinical studies demonstrate
ment of bortezomib (VELCADE®) and lenalidomide
that mapatumumab enhances the tumor-killing
(Revlimid®) and have worked on numerous myeloma
activity of bortezomib. Bortezomib, which has
clinical trials.
already been FDA-approved for use in myeloma,
Please tell us about mapatumumab.
has been shown to kill the cancer cells by blocking
Mapatumumab (also known as HGW-ETR1; TRM-1;
protein metabolism inside the cell. The combina-
and HGS1012) is a new cancer therapy being devel-
tion of mapatumumab and bortezomib attacks the
oped by Human Genome Sciences (HGS). Using
myeloma cell from the inside and from the outside.
genomic techniques, HGS originally identified the
The science, the hypothesis, and the methodology
TRAIL (tumor necrosis factor apoptosis-inducing
behind combining these two drugs are solid. We
ligand) receptor-1 protein as a member of the tumor
now need to assess how well this idea works in
necrosis factor receptor super-family of proteins. HGS
the clinical setting.
Asher A. Chanan-Khan, MD
studies, as well as those conducted by others, show
Roswell Park Cancer Institute
HGS has initiated a Phase II trial that is a random-
that TRAIL receptor-1 plays a key role in directly trig-
School of Medicine & Biomedical Sciences
ized, multi-center, open-label study to evaluate the
gering apoptosis in cancer cells.
University at Buffalo
efficacy and safety of mapatumumab in combina-
Buffalo, NY
Would you explain TRAIL and apoptosis?
tion with bortezomib in patients with relapsed or
refractory myeloma. Approximately 100 patients
Apoptosis is programmed cell death. It is a complex processes that
will be enrolled in the United States and Canada and randomized into
employs many proteins. All cells in general, and cancer cells in particular,
two treatment groups. The primary objective of this study is to evaluate
require certain proteins to survive. Caspases, a family of cysteine proteases
disease response, with one treatment group receiving the combination of
that control and mediate the apoptotic response, are the key enzymes in
mapatumumab and bortezomib, and the other treatment group receiving
apoptosis. There are different mechanisms to induce apoptosis in a can-
bortezomib alone. Secondary objectives are to evaluate safety and toler-
cer cell. The "extrinsic" pathway to apoptosis begins outside a cell, when
ability, and to determine plasma concentrations of mapatumumab for use
caspases are activated to cut other proteins, and a signal is sent to the cell
in a population pharmacokinetic analysis.
that it is time for it to die. The "intrinsic" pathway begins within the cell.
With the TRAIL mechanism, when the receptor on the surface of a cell is
The patients we have treated at our center have tolerated the mapatu-
touched by a drug, it causes a signal to be sent into the cell, prompting it
mumab very well. And, based on our experience, it does not seem that the
to die. Think of a cancer cell as a house with several doors. If you don't
addition of mapatumamab is causing more side effects than bortezomib
have the key to the front door, you might still be able to enter through the
alone. The eligibility criteria for this study, along with a list of institutions
back door or the patio door.
currently enrolling patients in the US and Canada, can be found at www.
clinicaltrials.gov, or via the IMF hotline at 800-452-CURE (2873).
How does mapatumumab work?
In closing, what is your opinion about developments in the field of
The results of preclinical and clinical studies to date demonstrate that
myeloma in the near future?
mapatumumab directly triggers cell death through apoptosis, inhibits
tumor growth in a variety of cancer types, and reduces the size of tumors
The new drug and the clinical trial we have just discussed are examples
in certain cancers. Mapatumumab triggers apoptosis by mimicking the
of our approach to myeloma research. We are looking at attacking this
activity of the natural protein, TRAIL. It attaches itself to the surface of
disease in new ways, as well as from multiple angles. We are investigating
the cell and sends a signal into the cell from the outside, triggering cell
non-chemotherapy drugs, alone and in combination. We are looking at
death. This is a potentially useful new door into the cancer cell that has
targeting the microenvironment, as well as targeting the myeloma cell and
not been investigated before. It is very attractive idea, which may provide
the various processes inside and outside the cell. It is not overly optimistic
novel therapeutic options to patients with a wide variety of malignancies.
to state that we are on the way to developing a very effective strategy to
Mapatumumab has significant potential in therapeutic settings either as a
attack myeloma from every single angle. mt
single agent or in combination with chemotherapy for the treatment of a
Editor's Note: Dr. Chanan-Khan is a graduate of Allama Iqbal Medical
broad range of human malignancies.
College, Punjab University, Pakistan. He completed residency training
What did the completed Phase II studies demonstrate?
in Internal Medicine at the College of Physicians & Surgeons, Columbia
University, Harlem Hospital Center (1997), and fellowships in Clinical
HGS has completed three Phase II clinical trials of mapatumumab as
Hematology (1998) and Clinical Oncology (1999) at the New York
monotherapy in patients with non-Hodgkin's lymphoma, advanced
University School of Medicine. Dr. Chanan-Khan serves on the multiple
colorectal cancer, and non-small cell lung cancer. The results of the
myeloma national guidelines panel of the National Comprehensive Cancer
Phase II clinical trial in non-Hodgkin's lymphoma demonstrated
Network (NCCN). He has authored or co-authored several journal publica-
that mapatumumab was well tolerated, could safely be administered
tions and abstracts.
800-45-CURE(87)
7

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Scientific & Clinical
u.s. myeLoma forum
Myeloma Today in conversation with Michael S. Katz
What is the U.S. Myeloma Forum?
by Drs. Rajkumar, Durie, and Palumbo. Transplant-
EstablishedbytheInternationalMyelomaFoundation,
related issues were broached by Drs. Giralt, William
the U.S. Myeloma Forum is a committee of the
Bensinger, and Mohamad Hussein. New myelo-
nation's leading multiple myeloma experts. The
ma drugs and the issue of disease relapse were
Forum's goal is two-fold: to form a coalition that will
addressed by Drs. Ken Anderson, Sagar Lonial,
work collaboratively on myeloma-related projects,
Ruben Niesvizky, and Shaji Kumar. Along with Drs.
and to avoid duplication of efforts and dilution of
Robert Mundy and Robert Vescio, and IMF presi-
valuable resources by various cooperative groups
dent Susie Novis, I was a member of the breakout
working on myeloma trials in the United States.
group that discussed patient issues and supportive
Multiple clinical trials are required to assess the best
care. The breakout sessions were followed by pre-
impact of new myeloma therapies. These trials need
sentations from all subgroups. Next, issues related
to be organized in a cohesive way to ensure that the
to transplantation, maintenance therapy, refractory
final results provide clear comparative data.
disease, treatments for newly diagnosed myeloma,
and how to achieve the best results for a patients
How will this work?
in various circumstances were debated by the par-
Like coalitions in Europe, the U.S. Myeloma Forum
ticipants.
will work in an effort to achieve consensus in order
Did these debates produce concrete outcomes?
to accelerate clinical trial development, approval,
Michael S. Katz
activation, and accrual. Historically, while there has
The presentations and debates among participants
been some level of cooperation between the various
of the U.S. Myeloma Forum resulted in the for-
groups in the US in inter-group clinical trials, these groups have not worked
mulation of action items and concepts for new clinical trials. And, as the
in as open a fashion as their European counterparts. The framework of the
discussion progressed, a consensus began to emerge. Finally, a plan for a
U.S. Myeloma Forum will facilitate input from all the major stakeholders
joint SWOG-ECOG clinical trial was presented and reviewed by members
in the most productive way. This will include both critical input for phar-
of the Forum, and the participants signed off on the plan. This was truly
maceutical trial design and facilitation of the National Cancer Institute's
an exciting moment.
Cancer Therapy Evaluation Program (CTEP) within the cooperative
What happens next?
group setting.
The next step for the U.S. Myeloma Forum was to submit the plan for a
You were in attendance at the Forum's first meeting. What can you
joint SWOG-ECOG clinical trial for review by SWOG and by ECOG. As of
tell us about it?
this printing, I am happy to report that the plan has been approved by each
I attended the first meeting of the U.S. Myeloma Forum as a patient
cooperative group. I look forward to being able to report on further prog-
representative. The gathering took place on April 17-18 in Santa Monica,
ress in the next issue
CA. The participants were welcomed by Drs. Brian Durie and S. Vincent
of Myeloma Today.
US Myeloma Forum
Rajkumar with introductory remarks. In discussing myeloma clinical trials
Please stay tuned.
Inaugural Meeting Participants
in the United States, Dr. Rajukumar represented the Eastern Cooperative
Ken Anderson
Seema Singhal
In conclusion, I'd
Oncology Group (ECOG) as its co-chair, Dr. Durie represented the
William Bensinger
Howard Streicher
like to add that I
Southwest Oncology Group (SWOG) as its co-chair, and Dr. Sergio Giralt
Ivan Borrello
Robert Vescio
think the founding
represented the Clinical Trials Network (CTN). Within these groups,
John Crowley
Jerome Zeldis (Celgene)
of the U.S. Myeloma
hundreds of institutions across America take part in large-scale random-
Brian Durie
Tom Cavanaugh (Celgene)
Forum by the IMF,
ized phase III clinical trials. The European cooperative groups were
Sergio Giralt
Todd Hyde (Celgene)
and the outcome of
represented by Dr. Antonio Palumbo of Italy, who is a delegate for the
Mohamad Hussein
Dixie Esseltine
its inaugural gather-
European Hematology Association (EHA). Statistical issues in trial design
Shaji Kumar
(Millennium)
ing, are very posi-
were addressed by Dr. John Crowley of Cancer Research And Biostatistics
Robert Kyle
Jackie Hilgers
tive developments
(CRAB). The CTEP perspective was presented by Dr. Howard Streicher.
Sagar Lonial
(Millennium, SWOG)
for all members of
Next on the agenda was the establishment of priorities for the U.S.
Ruben Niesvizky
Michael Myers
the myeloma com-
(J & J, Millennium)
Myeloma Forum.
Antonio Palumbo
munity. With this
Craig Tendler
Vincent Rajkumar
How was this accomplished?
committee acting as
(Ortho Biotech)
The participants separated into smaller breakout groups that focused
an umbrella for the
on specific issues. Trial design and statistical issues were tackled by
existing myeloma cooperative groups, we patients are more likely to
Drs. Crowley and Streicher along with IMF Scientific Advisory Board
benefit from the accelerated path to more effective treatments for our
Chairman, Dr. Robert A. Kyle. Frontline therapy was the issue addressed
disease. mt
8
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Board of Directors Profile
myeLoma toDay in conVersation witH e. micHaeL D. scott
Please tell us a little about your background.
How and when did you become a member of the
I was born in England but my parents moved to
IMF's Board of Directors?
work in West Africa when I was a child, so I also
At the initial recommendation of Schering Oncology,
spent time in Nigeria and the Cameroons. Initially
CoMed Communications was hired by the relatively
I went to a small private boarding school in
newly formed IMF to coordinate the very first clinical
Epsom, in southeastern England. Then I attended
meeting organized by the IMF. A friend had driven IMF
Westminster School in London, an institution
founder Brian Novis from Los Angeles to Santa Barbara
originally founded in 1179 and reorganized by
to meet me at the Four Seasons, where I was organizing a
Queen Elizabeth I in 1560. In 1969, I graduated
meeting of about 200 urologists. We had a great chat, and
from the University of Sussex with an honors
Brian sat in at the back of the meeting for a little while. I
degree in biochemistry. I have been involved
can only assume that he approved of what he saw because
in scientific and medical communications for
the IMF hired us to run their very first meeting just a few
nearly 40 years. I worked in scientific and medical
days later. By that time my parents had retired to south-
publishing until 1976, when I formed my own
ern Ireland, and so, since Brian Durie was going to be
communications services company, providing edi-
the chairman of that original IMF meeting, I stopped
torial, communication, and consulting services in
off to meet with him at the Royal Postgraduate Medical
the UK. I moved to the US in 1985 and joined a
School in London and we were able to talk through the
pharmaceutical advertising agency. I have worked
projected structure of the meeting.
for the same company ever since, but in a range
E. Michael D. Scott
That original IMF meeting took place in August 1992
of different roles. In communications and health
at the Arizona Biltmore in Phoenix, AZ. We were able
care, my most specific interests include cancer, pharmaceuticals, bio-
to get really cheap room rates because of the time of year. (I think the
technology, managed care, marketing and educational communications,
temperature was about 105°F in the shade.) Brian Novis was unfortunately
publishing, and new information delivery systems.
too sick to attend the meeting, and I had to help talk a very nervous Susie
How did you become interested and involved in the field of cancer?
into doing the opening address to about 90 physicians and maybe a dozen
In 1985, I lost a long-time friend to acute myelogenous leukemia. She was
patients. After Brian's death, we went on helping the IMF in a variety of
just 32 years old. She had had multiple rounds of chemotherapy and one
ways, and Susie would call me occasionally for suggestions and advice.
of the earliest bone marrow transplants for that disorder, carried out by
At that time the Board was primarily made up of long-time friends and
Ray Powles at the Royal Marsden Hospital in England. This led to a con-
acquaintances of Brian Novis and Susie, along with Brian Durie and other
tinuous interest in patient-related issues in the diagnosis and management
leading myeloma specialists. I was elected to the IMF Board in 1995.
of various cancers. From 1989 to 1995, CoMed Communications, the com-
Please describe some of your Board activities.
pany I was then managing, developed and executed a wide range of infor-
It's probably fair to say that I am someone who has, over time, most
mational, educational, and sales training initiatives for Schering Oncology,
strongly pushed for global expansion of the IMF, with greater and lesser
working on Eulexin® (flutamide), a hormone therapy used to treat
degrees of success. I was involved in the initial development of the IMF's
prostate cancer, and INTRON® A, an interferon used to treat hematologic
office in the UK, and have always felt strongly that the IMF would best
malignancies and solid tumors ­ including myeloma. From 1992 to 2000,
serve the patient community by operating as internationally as possible. In
I was also president and executive director of the Center for Bioclinical
the early days that was often difficult because of the limits on our funding.
Information, which supported health-care biotechnology educational pro-
However, together with Mike Katz, I persuaded Susie to start a website
grams for physicians and other health-care workers. From 1994 to 1997,
for the IMF in early 1995. That initial website revolutionized the ability of
I was involved in building and maintaining The Prostate Cancer InfoLink,
patients and family members around the world to get information about
and in 1996, I helped to found the National Prostate Cancer Coalition.
myeloma. Since 2003, I have served as the IMF's representative on the
Between 1995 and 1997, my colleagues and I developed and executed
Cancer Leadership Council (CLC), one of the premier Washington, DC-
multiple strategic education, market defining, and informational initiatives
based cancer patient advocacy organizations. The CLC is now comprised
for what was then Zeneca Pharmaceuticals (now AstraZeneca). We coordi-
of more than 40 cancer patient organizations, professional societies,
nated and executed various cancer-related educational and informational
and research organizations, including the American Cancer Society, the
initiatives, as well as speaker bureaus and CME programming. Also in
Leukemia & Lymphoma Foundation, the Lance Armstrong Foundation,
1992 we established the Institute for Continuing Healthcare Education
and the Susan G. Komen Foundation. The agenda of the CLC is set by
and achieved national accreditation as a provider of continuing education
the participating organizations, and CLC positions represent the patient-
for physicians and pharmacists. In 1997, along with other colleagues,
centered consensus of the groups on a wide range of issues related to
I founded Vox Medica Inc., one of the largest independent health-care
ensuring patient access to high-quality care. It was through CLC's support
communications groups in the USA. CoMed Communications became an
that we were, for example, able to ensure that thalidomide was included
independent subsidiary of Vox Medica, and I became an executive vice
on the original oral cancer drug demonstration project, even though it
president of Vox Medica. I now serve primarily as a senior consultant for
was not approved for treatment of myeloma at that time.
Strategic Solutions, an operating division of Vox Medica. Since last year,
I have been helping to develop and execute a range of projects for one
In your opinion, what have been the IMF's most significant
of the world's leading biotechnology companies. One of those projects is
accomplishments?
designed to help expand access to the biopharmaceuticals made and sold
The IMF was and remains the first and only global myeloma advocacy
by that company in America.
initiative. Our mission today is the same as it has always been ­ to support
Continues on Page 10
800-45-CURE(87)

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Board of Directors Profile
E. MICHAEL D. SCOTT ­ BOD -- continued from page 9
patients and their families while seeking a cure for a disease that is no
Would you share with us your insights into today's oncolog y
longer just a disorder observed in those of 60 years and older.
marketplace?
There are three things which I believe would never have happened with-
The US and the global oncology marketplaces are coming under increas-
out the initial and continuing efforts of the IMF. In the first place, we have
ing pressure for a wide variety of reasons. These include, but are not
been highly instrumental in helping patients to find the very best physi-
limited to, the rapidly increasing number of products available to the clini-
cians with real expertise in the treatment of myeloma. As every patient will
cal oncologist, the costs associated with targeted therapy, the improved
know, this is not an easy form of cancer to treat, and when one wants the
survival of large numbers of oncology patients, and the projected decline
best possible outcome one should seek out, if at all possible, a physician
in the number of trained cancer specialists. Currently, there are about
for whom managing myeloma patients is a major part of his or her daily
2,000 cancer therapeutics in the biopharmaceutical pipeline, of which
focus. Second, we were the initial driver behind the increase in funding
about 100 are either awaiting regulatory decisions or in Phase III clinical
available for myeloma research. We did not achieve this on our own, but
trials. Some community oncologists are so inundated with so much new
by helping to build global consensus on research priorities and by help-
information and so many new drugs that it is difficult for them to come to
ing patients to understand how best to participate in important clinical
a clear understanding of which patients are good candidates for treatment
trials, we have truly been a major player in the vast improvements that
with a specific agent, how to dose it alone or in combination with other
have taken place in the management of myeloma over the past 15 years.
agents, and how to manage side effects of treatment.
Thirdly, and most importantly, we have been there for everyone who had
Now myeloma is not a disorder that the majority of oncologists expect to
a question, from the sickest of patients to the child whose father, mother,
have a lot of experience treating. As I said earlier, the IMF has been a driv-
or grandparent has just been diagnosed and wanted to understand what
ing force in helping patients to get referred to physicians and centers for
this meant. The staff who man the IMF Hotlines on a day-to-day basis are
which myeloma is a major priority. The IMF also helps community physi-
at the very heart of what we do.
cians to understand the evolving diagnostic and treatment issues, teaches
What are your thoughts about the patient advocacy community in
them how to help patients find appropriate clinical trials, and spreads
general and the myeloma community in particular?
information about the latest advances in care. Often we are able to tell
Healthcare is changing ­ a lot ­ on an almost daily basis. My mother was
people about the latest advances long before the pharmaceutical industry
a nurse in England during the Second World War. She left me in no doubt
or the medical device industry is allowed to talk about use of specific
that if people wanted to get the best out of any healthcare system, they
products in myeloma. The use of thalidomide was a perfect example. As
needed to become involved in how that system worked. Historically, the
the number of new products to treat myeloma continues to expand, it will
average patient had little influence over these systems. Today, that has
become increasingly important for the IMF to foster the broadest possible
changed, not just in America, but around the world.
understanding of appropriate uses of these agents in the right combina-
tions and in the right patients. As we have seen just this year, Revlimid
Of course myeloma is only one of hundreds of diseases that we can't cure
actually appears to work better with low doses of dexamethasone than
and that we still can't treat as well as we would like. Any healthcare advo-
with the higher doses used in the past. The IMF has been publicizing this
cacy organization that thinks solely about its own priorities and interests
information to try and make sure that patients can be treated in this way.
will become a voice crying in the wilderness, so it is important for the IMF
to collaborate with others who have similar interests. So, we belong to
What are your goals for the future?
various organizations ­ like the CLC ­ that advocate for the highest pos-
My professional goals include continuing management and leadership
sible levels of cancer research funding. After all, more effective treatments
responsibilities in communications and healthcare. In the cancer com-
for myeloma aren't necessarily going to come from myeloma-specific
munity, I'd like to see us take the greatest possible advantage of the vast
research, and we need to optimize the possibility that new myeloma treat-
expansion in knowledge about the human genome. I am an advocate for
ments can come from research into any form of cancer.
embryonic and other forms of stem cell research ­ but I do understand
The costs of healthcare are escalating, rapidly. Deep down, we all know
and appreciate the ethical problems that others have with some aspects of
that such cost increases aren't sustainable. In America, managed care
such research. And I sincerely hope that within the next 10 years we will
companies seek to control the costs of treating the insured, but we have
find a more rational way to finance and organize healthcare in America.
46 million uninsured. In Europe and Canada, most people have some
My goals for the IMF are to go on growing our international presence
form of nationalized healthcare coverage, but access to that healthcare is
and availability, to continue to increase the funding that is available
limited in various ways. In Africa and South America, India and China, and
for research, and to help to discover one or more simple tests that will
other developing countries around the world, only the most affluent have
allow us to better define patients' risks for progressive disease at the
even the hope for treatment with a drug like lenalidomide (Revlimid®) or
earliest possible stage. The development of our presence in Europe, in
a bone marrow transplant if they need one.
South America, and in Israel in the past two years have been particularly
Advocacy and involvement is essential to ensuring that the most appropri-
important to me. This growth has started to support our activities in other
ate healthcare is available to the largest possible number of people. We
countries such as Japan and Australia where the IMF has had long-term
will never find a cure for myeloma without the essential research into the
partnerships in place. mt
underlying triggers of the disease and its progression. And if the cost of
Editor's Note: Mike Scott is a member of the American Society of Clinical
healthcare continues to rise at its present rate, we simply will not be able
Oncology (ASCO), the American Society of Hematology (ASH), the
to afford to provide the highest quality of care for more than a tiny minor-
American Urological Association (AUA), the Drug Information Association
ity of the world's population. People need to find time to support selected
(DIA), and the Healthcare Marketing and Communications Council (HMC).
advocacy initiatives and make that phone call to their congressman, their
He was the founding co-chairman of the PILOT Committee, and is a past
member of parliament, even their president or prime minister. If you don't
chairman of the Philadelphia Committee for the Pharmaceutical Advertising
Council. Since 2000, Mike Scott has taught courses on health-care commu-
speak out, you won't be heard!
nications at the College of Graduate Studies, Thomas Jefferson University.
10
www.myeloma.org

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Nurse Leadership Board
nLB actiVities upDate
Page Bertolotti, RN, OCN
By Joseph D. Tariman, RN, MN, ARNP-BC, OCN
Cedars-Sinai Medical Center
Samuel Oschin Comprehensive Cancer Institute
Los Angeles, CA
Elizabeth Billoti, ANCP, ONP, AOCN
The 32nd Annual Congress
ment of the most common
of the Oncology Nursing
side effects associated with
Society (ONS) took place April
novel therapies for myeloma,
St. Vincent's Hospital
New York, NY
24-27 in Las Vegas, NV. On April
including peripheral neuropa-
Kathleen Colson, RN, BSN, BS
26, the IMF's Nurse Leadership
thy, myelosuppression, deep
Dana-Farber Cancer Institute
Board (NLB) sponsored a
vein thrombosis, and gastro-
Boston, MA
two-hour satellite breakfast
intestinal side effects.
Kathleen Curran, RN, BSN, BS
symposium, which was sup-
University of Pittsburgh
The discussions proved to
Pittsburgh, PA
ported by educational grants
offer excellent reinforcement
Deborah Doss, RN, OCN
from Celgene Corporation,
of multiple myeloma diagno-
Dana-Farber Cancer Institute
Millennium Pharmaceuticals,
Boston, MA
sis procedures and side effect
and the IMF.
Beth Faiman, RN, MSN CNP, AOCN
management and treatment.
Cleveland Clinic
The NLB's purpose and vision
After the lectures, we dissemi-
Taussig Cancer Center
is to foster a partnership with
nated printed information,
Cleveland, OH
multiple myeloma nurses by
including the neuro-toxic-
Maria Gavino, RN, BSN
M. D. Anderson Cancer Center
identifying and addressing
ity assessment tool and slides
Houston, TX
their unmet needs, as well as
hand-out. Later, the electronic
Joseph D. Tariman, RN, MN,
Teresa Jahns Miceli, RN, BSN
those of their patients. The
ARNP-BC, OCN
versions of the faculty pre-
Mayo Clinic
ONS symposium, Management
Achievement Rewards for
sentation slides were emailed
Rochester, MN
of Novel Therapeutics' Side
College Scientists (ARCS) and
to the attendees to enable
Bonnie Jenkins, RN, OCN
Biobehavioral Nursing and
Effects: A Nurse Centric Model,
them to share the informa-
University of Arkansas for Medical Sciences
Health Systems Fellow
Little Rock, AR
was a natural extension of
School of Nursing
tion with nursing colleagues
Kathy Lilleby, RN
the Board's mission and our
University of Washington
at their hospitals.
Fred Hutchinson Cancer Research Center
opportunity to present NLB's
Seattle, WA
Seattle, WA
Next on NLB's agenda is a
preliminary consensus state-
Ginger Love, RN
meeting of its members in August in Santa Monica,
ment to the oncology nursing community. The
University Hematology Oncology Care
CA. At that time, the entire membership will review
Cincinnati, OH
program addressed nursing issues along the con-
the consensus statements on the management of
Patricia A. Mangan, MSN, AOCN, CRNP
tinuum of side effects management from preven-
the most common side effects submitted by each
Hospital of the University of Pennsylvania
tion to palliation. The topic was of great interest to
Philadelphia, PA
sub-group of the Board. Besides finalizing informa-
ONS attendees, resulting in the largest symposium
Emily McCullagh, RN, NPC, AOCN
tion that will be disseminated to healthcare provid-
pre-registration ever experienced at the congress.
Memorial Sloan-Kettering Cancer Center
ers, a patient-friendly version of our consensus
New York, NY
The event was chaired by NLB member Patricia
statement will be prepared for presentation at
Kena Miller, MSN, FNP
Mangan (Hospital of the University of Pennsylvania,
future IMF Patient & Family Seminars. mt
Roswell Park Cancer Institute
Lewiston, NY
Philadelphia, PA). I served on the faculty along
Katy Rogers, RN
with fellow NLB members Teresa Miceli (Mayo
Editor's Note: For four years, Joseph Tariman
was part of the multiple myeloma program at
Sidney Kimmel Comprehensive Cancer Center
Clinic, Rochester, MN) and Sandra Rome (Cedars-
Northwestern University in Chicago, IL. There,
Johns Hopkins University
Sinai Medical Center, Los Angeles, CA). Patricia
he worked on the phase II and phase III trials
Baltimore, MD
Mangan presented an overview of the NLB and
of VELCADE® and REVLIMID®. He is currently
Sandra Rome, RN, MN, AOCN
its activities to the audience, and then proceeded
completing the second year of a PhD program
Cedars-Sinai Medical Center
at the University of Washington in Seattle, WA.
Samuel Oschin Comprehensive Cancer Institute
with an introduction to multiple myeloma. The
Mr. Tariman chairs the peripheral neuropathy group
Los Angeles, CA
faculty presentations focused on the manage-
of the NLB.
Stacey Sandifer, RN
Cancer Centers of the Carolinas
Greenville, SC
Lisa Smith, MSN, NP, AOCN
Cancer Centers of the Carolinas
Greenville, SC
Joseph Tariman, CRNP, RN, APN, MN, APRN, BC, OCN
Northwestern University
Seattle, WA
Jeanne Westphal, RN
Meeker County Memorial Hospital
Litchfield, MN
Patricia Mangan, Teresa Miceli, Joseph D. Tariman, and Sandra Rome
800-45-CURE(87)
11

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Supportive Care
tHromBoemBoLic eVents
Myeloma Today in conversation with Deborah Doss RN, OCN
What are thromboembolic events?
area, and sudden distension of veins. Signs of PE
Thromboembolic events (TE) include deep vein
may include anxiety, sudden shortness of breath or
thrombosis (DVT), pulmonary embolism (PE), tran-
wheezing, chest pain or discomfort on inhalation,
sient ischemic attack (TIA), and stroke. DVT is the
and an increased heartbeat. Commonly, signs of
formation of a blood clot (thrombus) in a deep
TIA are the same as those of stroke, including sud-
vein, most commonly in the legs or the arms. PE is
den numbness or weakness of the face, arm, or leg
medical emergency where a clot travels to the lungs
on one side of the body, sudden trouble speaking
from another site. TIA is a "warning stroke" or "mini-
or understanding, sudden trouble seeing in one or
stroke" that occurs when a blood clot temporarily
both eyes, sudden trouble walking, dizziness, loss
clogs an artery, and part of the brain doesn't get
of balance or coordination, sudden severe head-
the blood it needs, thereby producing stroke-like
ache with no known cause. The short duration of
symptoms but no lasting damage. Recognizing and
these symptoms and lack of permanent brain injury
treating TIAs can reduce the risk of a major stroke,
is the main difference between TIA and stroke.
although most strokes aren't preceded by TIAs.
What diagnostic testing may be used to
Who is most at risk of TE?
evaluate a patient?
In general, patients with hematologic malignan-
If a patient comes in with a swollen extremity
cies have increased risk of TE or bleeding. Patients
and DVT is suspected, the doctor will most likely
Deborah Doss RN, OCN
with multiple myeloma may incur an even higher
Dana-Farber Cancer Institute
order an ultrasound of that extremity. A variety
incidence of TE as a result of protein in the blood,
Boston, MA
of laboratory tests may be performed as well.
which thickens the blood and increases the chance of
If PE is suspected, a V/Q scan of the lungs will
coagulation. Other risk factors may include but are not limited to morbid
be performed.
obesity, strong family history, previous occurrences of DVT, immobility,
What prophylactic options might be available to patients?
presence of a central venous catheter, recent surgical procedures, and
Some myeloma therapies require prophylaxis to safeguard against TE.
erythropoietin and high-dose dexamethasone, taken either singly or dur-
The most commonly used regimen prescribed by doctors is therapeu-
ing the same period of time. Some myeloma therapies, such as thalido-
tic warfarin (Coumadin®). Low molecular weight heparin (LMWH) is
mide plus dexamethasone or Revlimid® plus dexamethasone, may also
another medication commonly used to thin the blood. Due to the cost
increase a patient's risk of TE.
associated with LMWH, some doctors are continuing to use injections
What are some of the dangers of TE?
of heparin. Aspirin may also be
TE can affect the lives of both patients and their families by producing
recommended by the patient's
life-altering complications, including those affecting breathing, cognition,
healthcare providers. Mechanical
and overall function. Patient education about identifying symptoms of TE
prophylaxis prescribed by doctors
and reporting these to healthcare providers in a timely manner is key to
might include machines (sequen-
averting these possible dangers. Prompt recognition and diagnostic work-
tial compression devices) or
up can help increase positive outcomes.
antiembolism stockings (support
hose). An exercise regimen might
What signs and symptoms should patients and caregivers look for?
be prescribed by a physical therapist but, due to skeletal issues related
Signs of DVT may include swollen, red, or warm extremities, a fast heart-
to myeloma, a doctor must be consulted prior to embarking on any
beat, toes or fingers turning blue, a dull ache or tight feeling over the
exercise program.
How do myeloma regimen choices impact the risk of TE?
A decreased incidence of TE has been reported with less aggressive dosing
schedules and lower doses of thalidomide and steroids (alone or in com-
bination). Judicious dose reduction by the physician may increase qual-
ity of life and adherence to the therapeutic regimen. For example, dose
reduction regimens may apply to patients taking thalidomide (50­100 mg
daily) and/or dexamethasone (20­40 mg once/week, or 20 mg on days
1­4 of a monthly cycle). It is important to note that prophylaxis must be
tailored by the physician in accordance with each individual patient's risk
profile. Many of today's myeloma patients are quite educated about their
disease and I hope that this information will help provide them with talk-
ing points to discuss with members of their healthcare team. mt
1
www.myeloma.org

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Supportive Care
meet tHe imf HotLine coorDinators
The IMF Hotline 800-452-CURE (2873) is staffed by Debbie Birns, Paul Hewitt, and Nancy Baxter.
The phone lines are open Monday through Friday, 8am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
How did you become an IMF Hotline
broad range of novel therapies that have
Coordinator?
improved patients' survival and quality of
Nancy Baxter: After practicing law for five
life. I have seen first-hand how informed
years, I became a mother and no longer
patients are able to make more educated
wanted to work full-time. So I trained as
decisions about their treatment options
a psycho-social cancer counselor at UCLA
and how the patients' feedback about vari-
(University of California Los Angeles), and
ous therapies and side effects has impacted
went to work part-time at UCLA's Jonsson
doctors' approaches to dosing and clinical
Comprehensive Cancer Center (JCCC). Two
trial design. The IMF Hotline is a unique
years later, UCLA became one of the National
asset in the dynamic relationship between
Cancer Institute (NCI) Cancer Information
the patient and medical communities.
Service centers, and I was asked to supervise
Debbie: Working for the IMF has brought
a staff of 15 phone counselors. That's when
together and called upon everything I have
Hotline staff: Debbie Birns, Paul Hewitt, and Nancy Baxter
I recruited Debbie Birns to join our team.
ever studied or done professionally, or
All of us received advanced training from the NCI. In 1999, when the
experienced in my personal life. It is the most fulfilling work I have ever
NCI consolidated its California call centers and closed the UCLA office, I
done. I treasure the interaction with patients and caregivers, as well as the
became a patient services manager at the Leukemia & Lymphoma Society
intellectual stimulation of having the most accomplished clinicians and
(LLS). In 2001, I met IMF president Susie Novis at an outreach event. She
researchers as my teachers and mentors.
was interviewing candidates for the IMF hotline, and I recommended
Each of you has a sub-specialty. What is it?
Debbie for the position.
Debbie: Because of my research background, I track myeloma clinical
Debbie Birns: I was an undergraduate major in humanities and English
trials for the Myeloma Matrix. I also work with IMF Board member Mike
literature. I spent most of my sophomore year in Florence, which is where
Katz in conducting video interviews with myeloma specialists at the
I learned Italian. I completed two and a half years of a PhD program in
annual meetings of the American Society of Hematology (ASH) for posting
comparative literature when I had my first child and became a stay-at-
on our website, and I edit the IMF's educational materials.
home mom. When the youngest of my three children was a toddler, I
went back to UCLA to study professional writing and editing, and became
Nancy: In between taking Hotline calls and answering emails, I am
a manuscript editor for the UC Press. During the 1980s, several members
involved in outreach. I make sure that information about the IMF and
of my immediate family were diagnosed with cancer, including my mother-
myeloma gets out not only to the major cancer centers across the United
in-law, who had myeloma. Near the end of her illness in 1992, Nancy
Stated but also to smaller, community-based doctors.
recruited me for the NCI Cancer Information Service at UCLA. After the
Paul: My sub-specialty is to coordinate the participant registration aspects
program closed, I went to work at UCLA's Clinical Research Unit under Dr.
of the IMF Patient & Family Seminar program.
Dennis Slamon, whose prior work led to the development of the breast
What should prospective callers know about the IMF Hotline?
cancer drug Herceptin®. I learned a great deal about cancer clinical trials
there, but the job entailed only limited aspects of my training and experi-
Debbie: Perhaps one of the most surprising and useful aspects of the IMF
ence. Then Nancy called to tell me about the IMF.
Hotline is that none of the coordinators are medical professionals. We are
not doctors or nurses. We are people who have been trained to translate
Nancy Baxter: Once Debbie shared with me the impressions of her new
the most sophisticated science into terms that are accessible to our callers,
job at the IMF, I realized how much I missed working directly with patients
and to make information about a very complicated cancer and its treat-
and family members. Two months later, I joined the IMF Hotline.
ments readily available. Patients and their advocates must have the facts
Paul Hewitt: My background is as an actor. After a long run in a Broadway
in order to communicate well with the healthcare team. Our take-home
show in New York, I returned to Los Angeles, where Susie Novis and I live
message to patients and their loved ones is "KNOWLEDGE IS POWER."
on the same street. We would meet while walking our dogs, and we'd chat
Paul: We learn the latest developments in the field of myeloma from the
and catch up. That's how I originally came to work for the IMF. A couple
specialists who are actively working on putting an end to this disease, and
of years later, when the IMF was ready to add a third coordinator to its
this enables us to better serve our callers. And, if a patient or family mem-
Hotline, Nancy and Debbie approached me about joining the department.
ber is outside the United States and cannot get in touch with us by phone,
After six months of intensive training, I was ready to field calls.
I want them to know that we welcome their letters and emails.
What is it like to work on the IMF Hotline?
Nancy: We understand the issues that myeloma patients and caregivers
Paul: Our callers are thirsty for knowledge. Helping them address the var-
tackle. We are here to help answer their questions, and to help frame the
ious aspects of myeloma in a more informed way is incredibly fulfilling..
questions that they need to pose to their healthcare providers in order
Nancy: This is the best job I've ever had. I've received incredible training
to have a more productive dialogue. I look forward to going to work in
from the most extraordinary doctors. I work with wonderful people. I've
the morning so that I may serve the members of the myeloma community
gotten to know many amazing patients and caregivers. I have witnessed
who face each day of their lives with humor, courage, strength, dignity,
myeloma treatments evolve from being primarily transplant-based to a
and hope. mt
800-45-CURE(87)
1

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Education & Awareness
8tH annuaL imf support group LeaDers retreat
By Jack Aiello
WhenIwasfirstinvitedtoattendthe8thannual
the markers being used to track your myeloma, and
IMF Support Group Leaders Retreat, I was a bit
which tests calculate those markers, might give a
dubious. I knew that some good information would
patient the best chance possible to avoid the "MM
be provided for leaders of relatively new groups, but
sneak attack."
our patient-led San Francisco Bay Area MM Support
Lifestyle Influences: I did not change my approach
Group was founded in 1991, and our monthly meet-
to nutrition after I was diagnosed, so I didn't know
ings are consistently attended by 35 to 60 patients
what to expect from the retreat's presentation about
and caregivers. For myself, I was diagnosed with
nutritional and lifestyles influences on myeloma.
myeloma in April of 1995, went through a tandem
Did you know that the darker the berry or wine, the
auto transplant, then the original thalidomide clinical
higher the antioxidant levels and better for you? Or
trial (800mg/day!), and finally a full allogeneic trans-
that Vitamin C might interfere with the effectiveness
plant in 1998 before achieving a long-term remission.
of Velcade? Or how stress created from uncertainty
I stay well informed about myeloma research and
and fear can negatively impact your health?
treatment progress. So honestly, would I really get
much out of this meeting? Would I and our other SF
Pharma Company Updates: Presenters from
Support Group leaders learn to conduct more effec-
Jack Aiello
Celgene (Thalomid, Revlimid) and Millenium
tive meetings?
(Velcade) addressed issues concerning drug access,
reimbursement, Medicare, co-pay assistance, and programs for uninsured
In a word, ABSOLUTELY! The two days of the IMF Support Group Leaders
or underinsured patients. Check with your support group leader or con-
Retreat were packed with informative sessions, and I will now attempt to
tact the IMF for more information.
share with the readers of Myeloma Today the "take-aways" that I found
most valuable for members of our support group.
Myeloma Treatment Recap: Dr. Durie reminded us that being edu-
cated about available treatments empowers us to make better personal
Support Group Facilitation: Many good ideas on the subject came from
choices. Learn to understand your myeloma activity as measured by CRAB
Robin Tuohy, Maddie Hunter, and Lori Curtis. A common problem at
(Calcium, Renal, Anemia, Bone), chromosome information, age, and other
meetings is remembering names. Tags offer an easy solution but, when we
medical issues. More effective treatment is now possible, based on chro-
tried this in our support group, folks stopped wearing them after awhile.
mosome results from tests such as FISH, cytogenetics, GEP (gene expres-
One great idea presented was to add a star for every year past diagnosis,
sion profiling), SNP (single nucleotide polymorphisms, or changes in
making the name tag a "badge of honor" for long-term survivors. This
small DNA sequences), and DNA/RNA sequencing. For example, I learned
might also offer encouragement to newly diagnosed patients when, for
that Velcade appears to work independently of chromosome 13 deletion,
example, they would see a dozen stars on my badge.
and that Mayo Clinic doesn't transplant patients who have both chromo-
Public Profile: It is important to increase the public's awareness about
some 13 deletion and translocations of genetic information between
your group's existence. It still surprises me when I learn that someone in
chromosomes 4 and 14.
my area is unaware of our local support group, especially if the person is
Understanding Lab Tests: Mike Katz and Dr. Rodger Tiedeman reviewed
not a newly diagnosed patient. But this does happen. One solution is to
the lab tests vital to myeloma patients: SPEP to measure immunoglobu-
mail monthly announce-
lins in the blood, UPEP to measure immunoglobulins in the urine, IFE
ments to the Community
to measure M-spike, BMB to measure plasma %, and Freelite (FLC) to
Calendar sections of local
measure the light chain component of immunoglobulins. It was noted
newspapers and TV sta-
that FLC is a more sensitive test than SPEP, UPEP, or IFE, and that it can
tions. The IMF can also
detect response to treatment within a few days, as opposed to the month
help build your group's
required to detect response in the heavy chain immunoglobulins. FLC is
website and do a mailing
also a sensitive and rapid means of determining relapse.
to your local zip codes
to announce meetings. If
Clinical Trials: We had a fascinating interactive discussion about clinical
your group is engaged in a newsworthy event, the IMF's publicist, Stephen
trials that evaluate variations of existing treatments. One example of such
Gendel, can help you spread the word. If the IMF's Myeloma Mobile is
clinical trials was cited by Dr. Brian Durie, who noted that it has been
coming to a city near you this summer, take the opportunity to build a
shown that low-dose dexamethasone (LDD) provides a higher survival rate
myeloma awareness event around its arrival.
than standard-dose dex. In fact, Dr. Durie and Mike Katz explained that the
LDD clinical trial was the result of an interactive discussion at a previous
Keeping Members Interested: How do you make meetings interesting
IMF Support Group Leaders Retreat. At that point, we were joined via con-
so that folks attend regularly? Many groups host guest speakers. Doctors,
ference call by the myeloma experts on the Eastern Cooperative Oncology
nurses, nutritionists, and insurance and financial experts can give talks on
Group (ECOG) myeloma panel, Drs. David Vesole, Sagar Lonial, Angela
topics of interest to myeloma patients and caregivers.
Dispenzieri, and Vincent Rajkumar. The participants were polled about
Being A Better Patient: IMF's Mike Katz knows a lot about this subject.
other possible clinical trials involving variations in existing treatments,
He was diagnosed in 1991 and has done an incredible amount of patient
such as aspirin versus warfarin (Coumadin) for prevention of blood clots,
advocacy on behalf of the myeloma community. In his presentation, Mike
the addition of Velcade to Rev plus LDD, and the addition of Oral Cytoxan
reminded us how important it is to be an educated patient. Learning about
to Rev plus LDD.
Continues on next Page
14
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Education & Awareness
imf myeLoma moBiLe
The Tuohy Family: Coming to a City Near You
TheIMFisveryexcitedtosharewithyouthescheduleforourbiggestmyeloma July15­LosAngeles,CA­
awareness project planned for summer 2007. The MYELOMA MOBILE is on 4PM: Dr. Brian Durie
the road to educate and empower patients and their families in local communities The Samuel Oschin Comprehensive
Cancer Institute at Cedars-Sinai Medical
across the United States. The project is the brainchild of Michael Tuohy of Prospect, Center (Harvey Morse Audi., south tower)
CT, who was diagnosed with myeloma at age 36. Michael is traveling with his wife, July 23 ­ Phoenix, AZ ­
Robin, and their two children, 14-year-old Ally and 9-year-old Mikey.
10AM: Dr. Rafael Fonseca
Mayo Clinic Cancer Center at Mayo
The route for the MYELOMA MOBILE has been finalized. Activities will include infor- Clinic Hospital (Room 1-115)
mative discussions with local myeloma experts and dissemination of educational July 27 ­ Dallas, T X ­
materials covering a wide range of topics. Please join us in person or via the web. 10AM: Dr. Robert Berryman
The MYELOMA MOBILE is equipped with a GPS tracking system and you can fol- Charles A. Sammons Cancer Center at Baylor University
(Truett Hospital, Beasley Auditorium)
low its route on the IMF website www.myeloma.org. For more information, please
contact the IMF at myelomamobile@myeloma.org or 800-452-CURE (2873).
July 31 ­ Houston, T X ­ 10AM: Dr. Sheeba Thomas
The University of Texas M. D. Anderson Cancer Center
June 22 ­ Ann Arbor, MI ­ 10AM: Dr. Yasser Khaled
(Hickey Auditorium, R11.1400)
University of Michigan Comprehensive Cancer Center
August 5 ­ Atlanta, GA ­ 10AM: Dr. Sagar Lonial
(Rachel Upjohn Building, East Medical Campus)
Winship Cancer Institute of Emory University (First floor lobby)
June 26 ­ Rochester, MN ­ 10AM: Dr. Martha Lacey
August 9 ­ Baltimore, MD ­ 10AM: Dr. William Matsui
Mayo Clinic (Geffen Auditorium, Gonda Building)
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
July 1 ­ Denver, CO ­ 10AM: Dr. Jeffrey Matous
(David H. Koch Cancer Research Building, Owens auditorium)
Rocky Mountain Cancer Center (Event in the parking
August 11 ­ Philadelphia, PA ­ 10AM: Dr. Edward Stadtmauer
lot outdoors) Parking will be available at the site
Abramson Cancer Center of the University of Pennsylvania
(Biomedical Research Building II/III)
spotLigHt on aDVocacy
President Bush's 2008 Budget Includes Cuts in Cancer Programs
By Christine Murphy, MA
Along with our friends in the cancer community, the International ·$5.5billionfortheGeraldineFerraro
Myeloma Foundation (IMF) has been working diligently in 2007 to
Blood Cancer Program at the CDC.
increase funding for myeloma programs at the National Institutes of
In June, the House of Representatives' Labor,
Health (NIH), the National Cancer Institute (NCI), and the Centers for
Health and Human Services, and Education
Disease Control and Prevention (CDC).
Appropriations Subcommittee allocated $29.6
On February 5, the President released his budget for fiscal year (FY )
billion for the NIH, an increase of approximate-
2008. The President's budget included increases for defense and
ly $750 million. This increase for NIH includes
homeland security while at the same time including cuts in domestic
$201 million targeted for the global HIV/AIDS
programs such as those for cancer research. The President's FY 2008
fund which means that the net increase for NIH is approximately $550
budget recommended $28.9 billion for NIH and $4.8 billion for NCI.
million. The Subcommittee proposed $4.9 billion for NCI, an increase
The NCI was one of 5 institutes and centers that received a funding
of $72.7 million.
cut at the NIH in the President's FY 2008 budget. Additionally, the
IMF stands ready to work with the House and Senate to secure the highest
Geraldine Ferraro Blood Cancer program was level funded at the
possible allocations for myeloma programs at NIH, NCI, and CDC in FY
FY 2007 level of $4.5 million.
2008; however, it is important that the myeloma community communi-
Along with the One Voice Against Cancer (OVAC) coalition, IMF advo-
catewiththeirMembersofCongressontheimportanceofincreasedfund-
cates the following allocations for cancer programs in FY 2008:
ing for the cancer programs that impact myeloma patients. For updates
· $30.869 billion for the NIH,
on funding for these programs and IMF's advocacy efforts, please visit
· $5.114 billion for the NCI, and
www.myeloma.org. mt
SUPPORT GROUP LEADERS RETREAT -- continued from previous page
Friends Made, Friends Lost: All the valuable educational information
important for many of us to share our grief with each other before trying
presented at the IMF retreat aside, one wonderful benefit that I took away
to move forward.
from this meetings was new friends made and old friendships renewed.
So that's it. I hope that my "take-aways" are applicable for your support
Unfortunately, many of us have had to deal with losing friends to this
groups as well. If your group leaders attended this year's IMF retreat, I'm
crappy disease. It's important to allow time for grieving and perhaps even
sure they will provide you with other useful insights gleaned from this
to memorialize each passing at a support group meeting. In my group, we
meeting. Perhaps, with your encouragement, group leaders who weren't
lost several folks in 2006, including an active member of 14 years. It was
able to attend this time will do so next year. I certainly plan to. mt
800-45-CURE(87)
15

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International Affiliates
upDates from imf europe
By Gregor Brozeit
Sophomore years are always
are patients." They want to know
tough, whether you're a baby,
the same things, regardless of
a student, or a new program in
political boundaries. So, I would
Europe. But it is a good time to
like to briefly point out what I
set the stage for future success,
have discovered over the past 18
whether as an adult, a profes-
months:
sional, or a resource for compre-
1. Boundaries. I have yet to find
hensive patient services.
a disease that knows any man-
Dr. Morie Gertz of the Mayo Clinic
made boundaries ­ geographical,
(Rochester, MN) recently finished
political, or historical. Diseases
up a highly successful trip to
know only genetically-defined
Germany. On May 16, he met
boundaries that we have yet to
with 50 members of Myelom Hilfe
Gregor Brozeit, Christina Anderson (translator), Dr. Morie Gertz,
understand.
München, the Munich myeloma
Karin Kleineberg & Rolf Kunstmann (leaders of Myelom Hilfe Würzburg),
Wolfgang Zöller, and Dr. Hermann Einsele and Dr. Ralf Bargou
2. Politics. One similarity I have
support group led by myeloma
(University Clinic of Würzburg)
found on both sides of the Atlantic
patient Volker Filipp. Dr. Gertz
is that established constituencies
took more than 38 questions and
sometimes can be blinded by short-term considerations of long-term
follow-ups over a period of two and a half hours--none of which could
progress. That is human nature. In my experience at the IMF, I have
have been achieved without the translation services of Dr. Christian Straka
seen that short-term missteps are always corrected with long-term ide-
of the Interne Klinik Dr. Argirov (Munich), co-chair of the German study
als and organizational integrity. As we continue to bring that philosophy
group DSMM.
everywhere the IMF goes, we continue to keep the interests of our
Three days later, Dr. Gertz participated in a patient meeting attended by
entire community in the forefront.
more than 120 participants and sponsored by Myelom Hilfe Würzburg
3. Policies. Members of the myeloma community, regardless of where
(the Würzburg myeloma support group), the IMF, and the University
they live, must be aware of how they are impacted by public policy from
Clinic of Würzburg. This meeting was headed by Dr. Hermann Einsele,
various levels. In the US that means understanding federal, state, and
who was named to the IMF Scientific Advisory Board in December of
local policies, and how these might affect members of our community,
2006. Dr. Gertz presented a variation of his highly effective introduction
then responding effectively when needed. In Europe that means under-
to myeloma, using the "weeds in the garden" metaphor to provide a clear
standing the European Union, the national governments, the states, and
understanding of the disease.
the local medical administrative districts. They all impact research, drug
Dr. Gertz was followed by presentations by Drs. Ralf Bargou, Volker
development and approval, and patient issues at all levels.
Kunzman, and Einsele, all from the University Clinic in Würzburg.
4. Collaborations. Small disease groups like the myeloma commu-
Following the patient meeting, support group leader Karin Kleineberg
nity must work internationally and cooperatively in order to achieve
invited Wolfgang Zöller, a member of the German parliament and patron
results.
of the group's events, to speak and kick off an entertainment program.
5. Caregivers, friends, and loved ones. If there is one area in which
Some immediate events for the future of IMF Europe include IMF Patient
the IMF has been and international leader, it is in the understanding
& Family Seminars in Paris, Naples, Barcelona, and Heidelberg. Additional
and expression of the idea that caregivers, friends, and loved ones mat-
meetings are being planned for Germany, the Czech Republic, France,
ter. This is one of the most important ideas we have to share worldwide
Spain, and Italy.
and with each other.
The German- and Spanish-language IMF email newsletters, Myeloma
6. Patients. Because parochial interests can sometimes trump positive
Merkur and Mensajero de Mieloma, soon will be supplemented by French
change, we always have to ask ourselves--no matter what the personal,
and Italian language editions. Release dates and titles will be announced
organizational, or commercial stakes might be--"Does it matter to
on the IMF website.
patients?" Researchers have to go beyond learning about the disease
As I enter the 19th month of my time with IMF Europe, I reflect on the
and make sure that their work contributes to longer patient survival.
differences between what I have experienced in Europe and my previous
Doctors have to do all they can to treat each case uniquely, and work
six and half years representing the IMF in American public policy. During
with the patient in compassionate partnership. And the rest of us in the
that time, I had the honor of representing the IMF in numerous visits with
community have to ask ourselves every day if we are putting patients
support groups throughout the United States, as well as working within
first.
the Washington DC world of cancer politics.
The IMF continues to strive to find better ways to serve our community
The most startling thing I have found is a striking similarity of fears,
­ wherever in the world it may be. If you have ideas to contribute to our
hopes, and wishes that myeloma patients experience the world over. As
continued growth and development, please feel free to contact me at greg.
Dr. Kyle put it so directly to me after he spoke last year in Berlin, "Patients
brozeit@sbcglobal.net.
mt
1
www.myeloma.org

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Support Groups
minnesota: twin cities area
In 1996, as Pat Harwood lay TeresaMiceli(MayoClinic)explainedhowpatientscanbetterpreparefor
in the hospital on the day
transplantation, and pharmacist Mark Godwin (PharmD BioScrip) talked
of her myeloma diagnosis, she
about various oral therapies, as well as the financial support available to
received an unexpected visitor.
patients with myeloma. In addition, data was presented on nutrition and
Helen Berg, a hospital volun-
complementary therapies.
teer who had been diagnosed
"The sessions were interesting and informative," said Pat Harwood. "Dr.
with myeloma two years earlier,
Van Ness gave us all hope when he explained the importance of the recent
stopped by to introduce herself
research breakthroughs in the field of myeloma, as well as the overall
and to offer support and encouragement. "She was the angel who took
progress being made with targeted therapies." Pat, who recently attended
my fear away," said Pat. "That's when we both realized that there was a
the IMF's Support Group Leaders' Retreat (see page 14), also addressed
need for a myeloma support group in our area." The Minneapolis/St. Paul
the audience about how to best utilize the resources of a support group.
Multiple Myeloma Support Group was founded shortly thereafter, with
Another feature of the meeting was the presentation of the IMF Courage
five patients attending the first gathering. Currently, the group has over
Award to Mike O'Hara, a myeloma patient with a history of volunteerism
100 regular participants.
that long predates his diagnosis four years ago. While battling a treatment-
Over the years, the group has been active in the local community and has
resistant form of myeloma, Mike has remained a great inspiration and
been involved in numerous events and activities. In April of 2007, group
support to his fellow group members, and received a standing ovation
members embarked on organizing and hosting the first myeloma com-
as he accepted his award. In addition, Helen Berg was honored as the
munity workshop in the Minneapolis/St. Paul area. "I think that it is every
founder of the support group and for the many years she served as the
patient's responsibility to participate in furthering education, awareness,
group's co-leader.
and research funding for myeloma," said Pat. "And the IMF is our partner
The Twin Cities Symposium was an unqualified hit. Besides providing
in furthering our goals."
education and offering camaraderie to members of the Minneapolis/St.
Sponsored by the IMF and funded by unrestricted educational grants from
Paul, Stillwater, and Rochester support groups, the meeting proved to be
Celgene Corporation and Millennium Pharmaceuticals, the Twin Cities
an excellent means of raising myeloma awareness, as many of the people
Symposium took place on May 18, with an impressive roster of speakers
in attendance were new to the myeloma community." mt
on the faculty. Dr. Brian Van Ness (University of Minnesota) discussed
research developments that have resulted from the IMF's Bank On A Cure
Editor's Note: The Minneapolis/St. Paul support group meets every 4 to 6
initiative, Dr. Martha Lacy (Mayo Clinic) presented information about clini-
weeks. For more information, please email mplsmyeloma@hotmail.com or
call 952-473-1782 (Pat Harwood), 952-898-9660 (Donna Costello), or
cal trials and new therapies, oncology nurse and transplant coordinator
612-529-8904 (Helen Berg). For information on the Stillwater group, please
caLifornia: inLanD VaLLey
WhenMaryMing-Mosleywas InlandValleygroupalsoofferssupportviaphonetothosewhoarenot
diagnosed with myeloma in
able to attend in person. "We are a very caring group," said Mary. "We
1994, after years of misdiagnosis
really do go the extra mile."
and in the face of far-reaching
Besides offering emotional support and encouragement, the Inland Valley
symptoms, she was given two
group places particular focus on patient education. Members help each
years to live and referred for
other sort through their healthcare records and laboratory results, docu-
an allogeneic transplant. Finding
ment various medications and possible side effects, and prepare questions
no matched donor among her
to be posed during upcoming visits with doctors or nurses. "I have over-
siblings, Mary ended up proceed-
come so many obstacles to be here today," said Mary. "And I want to do
ing to an autologous transplant. After eight years in remission, a second
all I can to encourage, support, and help others through their myeloma
transplant and another remission followed. Throughout her journey with
journey. Being good patients involves staying informed about our disease
myeloma, Mary would regularly receive phone calls from fellow myeloma
and the emerging treatment options available to us. Myeloma survivors
patients referred by her local medical center and transplant unit.
must remain proactive about our personal healthcare as well as the well-
While there are a number of myeloma support groups in California, there
being of our community."
mt
were none in Mary's area, so she decided to start a new group with the
help of two friends and fellow patients. The Inland Valley group held its
Editor's Note: The Inland Valley Multiple Myeloma Support Group meets
first meeting in September of 2006, with only its three founders in atten-
on the 4th Saturday of each month at 9:00am at the George Gibson
Senior Center in Upland, CA. For more information, please contact Mary
dance. With a letter from the IMF, the group quickly secured a regular
Ming-Mosley at mingmosley@yahoo.com or 909-622-6616, Pat Hardy at
meeting location at a senior citizens center. Gradually, an outreach effort
hardyp@netzero.net or 909-463-3127, Carlene Pratt at carvette412@aol.
in the area began to attract new members. Today, the group has several
com or 909-875-8871, or Sosthenes Rogers at 909-949-2810.
participants who travel from as far as Long Beach to attend meetings. The
800-45-CURE(87)
17

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Patient & Caregiver Experience
one miLe at a time
By Clyde Corales
Ihave always been a workaholic. Besides
astounded by the beauty of the Sierra
my career at the Internal Revenue Service
Mountains, covered with pine trees and
as an IRS employee service representative, I
snow, and the intense blue waters of
have traditionally kept at least one other job
Lake Tahoe. By the time that ride was
going at the same time. In 2004, I was also
over, I had cycled over 1,000 miles in a
back in college, nearing completion of stud-
five-month period, both as an individual
ies in economics at the University of Texas
and as a member of a team. It was the
at Austin. Life was busy to say the least.
experience of a lifetime.
While teaching a class to IRS employees, I
The next day, a friend approached
started experiencing sleep apnea. A visit to
me and said, "You rode your three
the doctor revealed a problem in my sinus
centuries. You've made your point."
area and, within hours, I was getting a
But I kept cycling and, one mile at a
head scan. Soon, I was having a biopsy. On
time, I had biked a total of 2,500 miles,
October 1, 2004, I was diagnosed with mul-
including 13 century rides, by the end
tiple myeloma. My life went into a tailspin
of 2006.
of denial and depression.
In 2007, I continue to participate in
The plasmacytoma in my nasopharynx
rides, cycling for the benefit of the
had amyloid formations, and therefore it
IMF in hopes of one day reaching a
required prompt treatment. After a ful
cure. If the IMF's motto is "Until There
course of radiation, the tumor had not
is a Cure... There is the IMF," then
shrunk sufficiently, so I had to have addi-
my motto became, "Until there is a
tional treatments. Chemotherapy and three
Clyde Corales
cure, I ride for the IMF." To get to the
surgeries followed, plus a multitude of tests
recent IMF Patient & Family Seminar
to track my M protein and amyloid deposits.
in Houston, I rode 187 miles through
some of Texas' most beautiful landscapes. Red poppies, blue bonnets, and
When I was a child, my bicycle was a daily source of fun for me. When I
all sort of flowers were blooming along the road and throughout fields
went to college the first time, a bicycle was my primary means of trans-
across the countryside. Cows, donkeys, horses, and other farm animals
portation. When I joined the military, I would cycle from the Air Force
kept me company. As the Houston skyline appeared on the horizon, I
base all the way to Mexico and back. Riding a bike always helped me to
thought of the day when we will all see the cure to our disease, and this
focus my thoughts and to relax, and it brought me closer to the beauty
filled me with such excitement.
of nature that I love so much. So, on October 1, 2005, I took out a bank
loan and bought a bicycle in celebration of the first anniversary of my
For me, coping with myeloma has been a grueling challenge, both physi-
cancer survival.
cally and financially. But I wouldn't change a thing. My diagnosis forced
me to look at life in a new way. It brought me closer to my family and
When I picked up my new bike from the shop, I could barely ride it
friends, and has enabled me to see everything from a different perspec-
around the block. It spent the next six months sitting in my apartment.
tive. I didn't know what I had until I was in danger of losing it. Myeloma
Then, gradually, I started taking it out. And I found that returning to
opened my eyes and my heart to helping others. Now I rise every morning
cycling helped me to fall in love with life all over again. I joined the
with thankfulness for the gift of another day to move closer to achieving
Leukemia & Lymphoma Society's Team In Training®, the world's largest
my life's goals.
endurance sports training program, and started participating in group
bike rides to raise funds for myeloma.
Today, I am 45 years old, and I consider myself lucky to have the life
I now live. I have seen my son Christopher (20) go off to study at the
My first long-distance ride was the 48-mile Pedal Through the Pines in
Massachusetts Institute of Technology, after successful treatment of a
Bastrop, TX. Next came the 70-mile Hill Country Ride in Liberty Hill, TX.
benign condrosarcoma. My son Michael (21) is also in college, and daugh-
My first "century ride" (a name used for bike events that are approximately
ter Cristina (12) is doing great in school. For the next step of what I hope
100 miles long) took me through 102 miles of the Texas hill country. Then
will be a long journey of living with cancer, I would like to gather teams of
I biked 107 miles in the Armadillo Cross-Country Ride. My next group
cyclists around the country who will ride to spread the message of hope
ride in Blanco, TX, was the last of my training rides prior to embark-
and to raise awareness of myeloma and the IMF. I am currently training
ing on America's Most Beautiful Bike Ride, a 102-mile circle around
my daughter to cycle, so my rides are not always long-distance, and I hope
Lake Tahoe, NV.
that some of you might be motivated to join us. If you are interested in rid-
In America's Most Beautiful Bike Ride 2006, I was one of more than 3,000
ing, please contact me through IMF's Suzanne Battaglia at 800-452-CURE
riders united to raise funds for blood cancer causes. As we rode, I was
(2873) or sbattaglia@myeloma.org. mt
18
www.myeloma.org

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Investing in the Future
myeLoma toDay in conVersation witH caroL kLein & nancy moses
"Investing in the Future" features profiles of IMF members
who are making profound investments in the myeloma community and the path to a cure.
We hope that the stories of how and why these individuals have chosen
to commit so significantly to the fight against myeloma will inspire you as much as they do us.
Please tell us when and how myeloma
Eagan contributed a luxurious Napa
entered your lives.
Valley getaway to the Villagio Inn &
Nancy Moses: In April of 2003, my hus-
Spa, plus we received several donat-
band Bill was diagnosed with myeloma.
ed items and services from vendors
Within hours of his diagnosis, we received
in the DC area.
a phone call from Carol and Benson.
Nancy Moses: We sent out invita-
Coincidentally, they called us from the car
tions to people all over the coun-
while on their way to dinner with Susie
try, because we knew that even
Novis and Dr. Brian Durie, the president
those who would not be able to
and chairman of the board of the IMF,
attend would choose to support our
respectively. From the four of them, we
effort to raise funds for a myeloma
heard what we most needed to hear: that
research grant. Many people bought
myeloma was not a death sentence, that it
raffle tickets, regardless of whether
is a manageable disease.
Carol Klein, Susie Novis, and Nancy Moses
they would be able to join us for the
Were you two friends at the time?
event. And we were thrilled at the turnout for the tea ­ more than 130
women chose to spend their Sunday with us.
Carol Klein: We knew many people in common, but didn't really know
one another. Benson and I learned of Bill's diagnosis from our mutual
Were the guests at your event members of the myeloma community?
friends, and immediately reached out to him and Nancy. A couple of days
Carol Klein: A few were but most were not. This gave us an opportunity to
later, we met at our house. Four years later, we are the closest of friends.
raise awareness by educating our guests about myeloma. The tea featured
Nancy Moses: Benson became my husband's hero in his battle with
a very special guest speaker, Susie Novis of the IMF. Susie is a very accom-
myeloma, and their relationship has helped Bill through some trying
plished woman, and a compassionate and dedicated friend of the entire
times. And my wonderful friendship with Carol has now evolved into a
myeloma community. She has also been my dear friend for the past eight
very successful collaboration.
years. At the tea, Susie shared with us the story of the IMF, from its humble
beginnings as a three-person operation in the basement of her home to the
How did you two come up with the idea of hosting an afternoon
international organization that now encompasses a membership exceed-
tea fundraiser?
ing 135,000 individuals in 113 countries. The IMF has raised over forty
Carol Klein: Benson and I chaired the 2006 Robert A. Kyle Lifetime
million dollars to support myeloma research and programs, while keep-
Achievement Award, which honored Dr. Durie and was held at the
ing overhead to an impressively low 10% for expenditures. All that Susie
National Press Club in Washington, DC. Bill and Nancy attended the
has accomplished, and the standards of excellence she has set, are a great
event. At the end of the evening, Nancy approached me about organizing
example of how important women are and what we can achieve.
a fundraiser together.
So what was the outcome of your joint fundraising venture?
Nancy Moses: Bill's myeloma was under control by that time, and I felt
Nancy Moses: In total, our afternoon tea raised $40,000 for a myeloma
that it was time for me to give back to the myeloma community. The Kleins
research grant. It was gratifying and empowering to learn what a differ-
had been involved with the IMF for many years, and I knew that Carol had
ence each one of us can make when we commit to a goal. Carol and I both
lots of experience with fundraising and event planning. Carol and I met
feel so fortunate to have such strong support from so many of our friends
to go over ideas, and we thought that it would be fun to organize a tea for
and family, and we thank them for their time, energy, and contributions
the ladies to spend a Sunday afternoon together. Both of us have many
to the fight against myeloma!
mt
friends who are very philanthropic.
What was it like for you, Nancy, to help plan and execute your first
Planned Giving
fundraiser?
There are many ways to support the IMF. It is important that you find the
Nancy Moses: I must say that it was surprisingly easy. The beauty of the
approach that best meets your needs and fulfills your wishes. In order
idea of hosting a tea was that it did not require sponsorship to get the
to help start the thought process for your gift planning, we suggest the
event off the ground. Also, Carol and I put together an event committee,
following forms of giving:
and those ladies helped us with every task along the way. We are thrilled
· Bequests in your Will or Trust
· Annuity Trusts
that we picked such winners!
· Gifts of Securities (Stocks)
· Unitrusts
· Gifts of Real Estate
· Term-of-year Trusts
How did you proceed once the committee was formed?
· Charitable Lead or Remainder Trusts
· Gifts of Life Insurance
Carol Klein: Our committee was quite large, about 30 women, and con-
Estate and gift planning requires thoughtful consideration and discussion.
sisted of half Nancy's friends and half mine. We held an organizational
To learn more about any of the suggestions listed above, or other forms of
meeting to decide when and where to hold the tea, how much to charge
giving that might inspire you, please contact Susie Novis at 800-452-CURE
for attendance, what the invitations should look like, etc. We also decided
(2873) or snovis@myeloma.org. We also invite you to visit our website at
to do raffles, which meant we had to secure prizes. IMFers Tim and Donna
www.myeloma.org for a more detailed explanation of these giving plans.
800-45-CURE(87)
1

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Member Events
imfers raise funDs to Benefit myeLoma community
By Suzanne Battaglia
OnMarch31,SafariSam'sclubinHollywood,
for the IMF's Bank On A Cure initiative. More than 400 guests attended
CA, was alive with music as the F.O.R.
Dr. Scott Lewis's Outrageous Comedy Hypnosis Show, which took place
(Friends Of Richie) benefit was in full swing.
at the Annenberg Center in Rancho Mirage, CA. Dr. Scott has been enter-
The concert, held in honor of Richie Hass,
taining audiences with his fam-
was the brainchild of Scott Heustis. Richie was
ily-friendly show as a comedy
diagnosed with myeloma in December of 2006
hypnotist at the Riviera Hotel in
and, in addition to battling his disease, he
Las Vegas for the past five years.
had another challenge to overcome. With no
The Lewis family benefit for the
medical insurance, getting the proper treatment
Richie Hass
IMF featured Mark Kornhauser
presented a significant problem. "Richie is a multi-instrumentalist musi-
as the MC and magician, and a
cian who is well known in the California music scene," said Scott.
raffle drawing for a wide variety
"Everyone just loves the guy, and suddenly we were all involved in orga-
of prizes. The idea for the fundraiser came from Revina Lewis, a myeloma
nizing a concert to raise money. Sixteen bands signed on before a month
patient currently going through chemotherapy, who was able to leave the
had gone by, and we had to turn the rest away." While his friends wanted
hospital just two days prior to attending the event.
to raise funds for his upcoming transplant, Richie instead directed the
Many others dedicated their activities to raising funds and awareness.
money to the IMF's patient programs so that it would benefit as many
Twelve-year-old Gabriel Birger made the IMF his bar mitzvah project
people as possible.
by writing letters, soliciting autographed sports memorabilia for sale,
On April 24, Music Against Myeloma, an event
and organizing a myeloma education booth
founded and organized by Slava Rubin, took
at the Weston Art Fair in Florida. Isabel
place at The Cutting Room in New York City.
Prosper and her sister Ricki honored their
The evening was a tribute to Slava's father, Mark
father by organizing the Myeloma Research
Rubin, who passed away from myeloma in 1993.
Run/Walk for Joseph Prosper and joining
More than 160 of the Rubins' family and friends
over 50,000 other runners who participated
gathered from seven states and three countries.
in the Vancouver Sun Run, Canada's largest
The event featured music by Benji Rogers, Lost
10K race. The Meijer Kentucky Derby Festival
In October (led by Matt Ostrower, the event's
Marathon welcomed Dan Molnar, who race-
Slava Rubin and
music director), and Josh Walker. Artisanal
walked the 26.2 miles to honor his friend,
Suzanne Battaglia
Premium Cheese served up gourmet cheeses,
Jerry Greenlee. "This effort gave me the sense that I am doing something
Sugar Sweet Sunshine baked scrumptious cupcakes, and Harpoon
to make a difference," says Dan, "That's a good feeling!" Jim Wilson ran
Brewery sponsored cold beer. Cecilia Rubin provided Pralin socks, which
the Bayshore Marathon in Michigan
were designed for the event and sold out quickly. Grandstand Sports
to honor his friends and fellow class-
ran a silent auction, Kendra Shedenhelm created the event's design, and
mates of the Findlay High School
Kezi provided photographic services. Great raffle prizes included an iPod
Class of 1974, Edie Posey (Bowman)
Shuffle. I flew in from Los Angeles to attend the event and to give a talk
and Tim Guthrie, both of whom have
about the amazing strides that have been made in the field of myeloma
myeloma. "I wanted to do something
treatment. Slava, the perfect host, made everyone feel comfortable and
to be a part of their fight, just like
welcome, and created an excellent setting for entertaining guests while
they did for me when I fought and
raising myeloma awareness and funding much-needed research.
beat testicular cancer back in 1977,"
Ricki Prosper, Peter J. Kletas,
On May 19, the 8th Annual "JC" Golf Tournament returned to Wapicada
said Jim. Erin Yess, Kirstin Wilson,
and Isabel Prosper
Golf Course in Saint Cloud, MN. This stellar annual event is held in honor
and Harper Giese held the Help
of Janet Carol "JC" Johnson, and is organized by her family and friends
from Heaven 5K Walk at Lake Winona in Minnesota to honor their friend,
with the support of members of the local myeloma community. The fun
Brianna Vitek, who was killed in a car accident. "Brianna had supported
day-long event started with a putting contest, followed by 18 holes of golf
several myeloma benefits in honor of her aunt Cindy, a patient, so we
and numerous contests throughout the course, including a hole-in-one
decided to hold a benefit for the IMF to keep Brianna's spirit alive by
contest to win a new car. After golf, the event's major returning sponsors,
helping people who are battling this disease," said Erin.
Green Mill Restaurant and Short Stop Custom Catering, served a delicious
Join Us
meal for over 200 golfers and guests. Dinner was followed by an awards
For information about upcoming events in your area, please contact me,
ceremony and dancing to live music by the band "Canoise." There were
Suzanne Battaglia, at sbattaglia@myeloma.org or 800-452-CURE (2873).
many opportunities for both golfers and non-golfers to win silent auction
If you are interested in organizing an event, our FUNdraising program
and raffle prizes donated by generous local companies and individuals.
provides you with the tools, assistance, and expertise to make your effort
Our thanks go to all the supporters and volunteers whose participation
a success. No idea is too large or too small. The IMF is grateful to all who
and contribution has made the JC tournament program one of the most
contribute their time, imagination, and hard work to benefit the myeloma
successful local myeloma events ever.
community. We are committed to working with you to continue to raise
On May 20, the Lewis family ­ Revina and Norm, and their son Scott
awareness and funding for myeloma education and research. Please join
­ organized a successful benefit to raise myeloma awareness and funds
us in working together toward our common goal... a CURE. mt
0
www.myeloma.org

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News & Notes
VELCADE® plus DOXIL® approved
combination with lenalidomide as compared to the higher, standard dose
for myeloma
of dexamethasone used in combination with lenalidomide to treat patients
The U.S. Food and Drug Administration has approved a new treat-
newly diagnosed with multiple myeloma. All patients in S0232 have been
ment option for myeloma patients who have relapsed or who have not
given the choice of switching to REVLIMID with dexamethasone, with the
responded to at least one other course of treatments. The combination
option of using low-dose dexamethasone.
of DOXIL® with VELCADE® provides nearly a three-month improvement
Millennium invites Support Group Leader
in time to disease progression as compared to VELCADE® alone, which
to Kos, Greece
provides a 43% improvement in response, according to a phase III multi-
Millennium Pharmaceuticals has invited Maddie Hunter, co-leader of the
national clinical trial. "This is an important new combination for patients,
Philadelphia Multiple Myeloma Networking Group, to attend the XIth
especially those with resistant myeloma, because of the VELCADE®/DOXIL
International Myeloma Workshop as a Patient Representative. Millennium
synergy ­ VELCADE® increases the sensitivity of cancer cells to DOXIL
is underwriting the expenses necessary for Maddie to attend this impor-
and DOXIL does the same for VELCADE®," said Dr. Brian G.M. Durie.
tant conference in Kos, Greece, and to write about presentations and news
"The growing success treating myeloma and extending patients' lives is
of interest to myeloma patients and caregivers. "We believe that patients
due in large part to new drugs that can be used in combination and in
and caregivers will directly benefit from her reporting skills and fresh
sequence, and the approval of the new VELCADE®/DOXIL combination
perspective," said Ronny Mosston, senior director for patient advocacy
fits perfectly into that strategy." DOXIL is a specially formulated version
and professional relations at Millennium. Please stay tuned to the IMF
of the chemotherapy agent doxorubicin, and is approved for use in other
website for additional information and Maddie's reports from Greece the
forms of cancer. VELCADE® (bortezomib) is approved for myeloma
last week in June.
patients who have relapsed or not responded to a previous course of treat-
ment. VELCADE®/DOXIL may be used with or without steroids, providing
Transfusion Expert Urges Use
patients with a steroid-free alternative.
of Filtered Blood
Reimbursement at Risk for ESAs
Neil Blumberg, MD, the lead author of a University of Rochester research
for Management of Anemia
study, argues that leukoreduced blood is safer for transfusion recipients
because removing the white cells from donor blood reduces the chances
Recently the Centers for Medicare and Medicaid Services (CMS), the
of a negative reaction by the host immune system. While leukoreduc-
agency that determines government reimbursement policy, proposed
tion increases upfront costs, several cost-benefit analyses show that the
changes that, if approved, would impact Medicare coverage for eryth-
price of each unit of filtered blood is offset by savings from less use of
ropoiesis stimulating agents (ESAs) in the management of patients with
antibiotics, as well as by reduced overall lengths of stay in the hospital.
myeloma. Many myeloma patients are currently being treated with ESAs
Dr. Blumberg et al. report that in patients who received leukoreduced
such as Procrit, Epogen, or Aranesp, thus reducing or eliminating their
blood, post-surgical infection rates dropped from 33% to 23%. In 1998,
need for transfusions. The IMF has weighed in with CMS regarding the
the University of Rochester's Strong Memorial Hospital became one of the
myeloma community's concerns with the proposal. Implications of the
first hospitals in the country to begin using leukoreduced blood for all
CMS proposal include:
cardiac surgery cases. In 2000, the hospital extended this practice to all
· Interfering with the doctor-patient relationship in deciding the best
transfusion patients.
treatment options for myeloma patients.
· Significantly increasing patient out-of-pocket costs for ESA therapy by
VELCADE Refunds in Britain
limiting or denying reimbursement.
The National Health Service (NHS), which provides free healthcare for all
· Setting a dangerous precedent for national policy by refusing reim-
British subjects, has to date refused to cover the use of VELCADE® because
bursement for a treatment before a thorough review of the data and a
of its high cost. Now, a division of Johnson & Johnson in Britain is offering
final determination is made by the Food and Drug Administration.
to refund the cost of VELCADE® if the patient's health does not improve as
a result of the therapy. This novel approach could enable the NHS to pre-
Because there is always the possibility that private insurance carriers will
scribe a wider range of expensive but potentially beneficial drugs.
mt
follow the Medicare policy, many members of the myeloma community
submitted their input to CMS before the public comment period for the
Imagine Moving Forward is the
proposal ended on June 13th. CMS must make a final coverage determi-
theme of the IMF's myeloma brace-
nation within 60 days after the end of the comment period. The IMF will
let. Wear one in honor, celebration,
monitor the outcome of this issue and will keep the myeloma community
or in memory of a loved one. When
informed about the final decision.
people ask you about it, you'll have
SWOG trial closed
a perfect opportunity to spread
the word about multiple myeloma.
The Southwest Oncology Group (SWOG) has permanently closed enroll-
These bracelets are only $1 each
ment in a federally-funded, Phase III, randomized, controlled clinical
in sets of 10. Youth bracelets are
study (S0232) for newly diagnosed myeloma patients comparing dexa-
now available, so everybody in your family who has been touched
methasone with a combined therapy of dexamethasone plus REVLIMID®.
by myeloma can wear one! Order bracelets online at our website
SWOG based its decision on the preliminary one-year survival results
www.myeloma.org, or contact Suzanne Battaglia at SBattaglia@
from the Eastern Cooperative Oncology Group (ECOG) Phase III study
myeloma.org or 800-452-CURE (2873).
(E4A03), which is evaluating the use of low-dose dexamethasone in
800-45-CURE(87)
1

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Special Announcement
Dr. roBert a. kyLe receiVes DaViD a. karnofsky memoriaL awarD
The 43rd annual meeting of the American
Throughout his distinguished career, Dr. Kyle has been
Society of Clinical Oncology (ASCO) took
honored with more than 50 awards for his expertise
place June 1­5 in Chicago, IL. This premier
and dedication to both science and patient care. Three
educational and scientific event in the field of
prestigious awards given to oncology professionals in
oncology was the backdrop for the presentation
various specialties have been named in his honor: the
of the 2007 David A. Karnofsky Memorial Award to
IMF grants the Robert A. Kyle Lifetime Achievement
IMF Director and Scientific Advisory Board Chair,
Award to physicians who demonstrate "a singular
Dr. Robert A. Kyle. Named for one of the pioneers
dedication to and compassion for myeloma patients
in the field of oncology, the David A. Karnofsky
and treatment of their disease," the Waldenstrom's
Memorial Award is bestowed upon researchers
Macroglobulinemia Foundation presents the Robert
whose work has changed the general practice of
A. Kyle Award for important contributions to the
oncology. The award recognizes Dr. Kyle, who
therapy of that disease, and Mayo Clinic Arizona pres-
has been honored throughout his career for his
ents the Robert A. Kyle Award for Excellence in Clinical
groundbreaking work and for pioneering research
Investigation to the physician at that institution who
in multiple myeloma and monoclonal protein
has conducted the most outstanding work in any field
abnormalities.
of research. Dr. Kyle has over 1,800 published materials
In the 1960s, Dr. Kyle created a special protein lab-
to his credit, and has co-editor credit for four editions
Robert A. Kyle, MD
oratory at the Mayo Clinic. He was responsible for
of Neoplastic Disorders of the Blood and three editions
Mayo Clinic
establishing Mayo Clinic's dysproteinemia unit for
Rochester, Minnesota
of Myeloma: Biology and Management.
patients with myeloma, macroglobulinemia, pri-
"Dr. Kyle has brought a scientific rigor and integrity to
mary amyloidosis, and other hematologic disorders. Dr. Kyle's discovery of
clinical research, which provides a model for everyone. He has the most
monoclonal gammopathy of undetermined significance (MGUS) in 1978
comprehensive knowledge of published research of anyone working in
and smoldering multiple myeloma in 1980 is considered fundamental to
the field," said IMF Chair, Dr. Brian G. M. Durie. "He brings that breadth
the contemporary understanding of hematology. He initiated numerous
of knowledge to the bedside and is able to provide management guidance
programs that have improved patient care and advanced clinical science,
with skill, elegance, and a great humanity. His carefully measured advice
and he continues to pursue cutting edge research.
is cherished by all who seek it." mt

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