Myeloma
Today SPRING 2007
Volume 7 Number 2
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...
Dr. Brian G.M. Durie
Michael S. Katz, member of
n Susie Novis' Dear Reader PAGE 3
discusses the status of the
the IMF Board of Directors,
n Letters to the IMF PAGE 3
initial phases of the IMF's
talks about coping with his
innovative Bank On A
myeloma diagnosis, his com-
n IMF Welcomes New Scientific Advisors
Cure® research initiative,
mitment to the patient com-
PAGE 10
the world's first repository
munity and the IMF, and his
of DNA created to advance
outlook for the future. PAGE 4
the understanding of myeloma. PAGE 6
Meletios A. Dimopoulos,
Dr. Robert Z. Orlowski, the
IMF Scientific Advisor and
overall study chair for two
Chairman of the orga-
myeloma clinical trials of
nizing committee of the
n News & Notes PAGE 10
VELCADE® plus DOXIL®,
XIth International Myeloma
Workshop, shares how
n Nurse Leadership Board activities
explains the role of this
he became interested in
update PAGE 11
combination therapy in
myeloma and involved with the IMF, as well as
multiple myeloma, as well
n Los Angeles IMF Patient & Family Seminar
the current focus of his scientific and clinical
as other treatment options available to patients
report PAGE 14
activities. PAGE 5
and their healthcare providers. PAGE 7
n IMF Myeloma Mobile
Gary Benanav, 26-year
gets ready for the
Dr. S. Vincent Rajkumar
survivor, tells his story
road PAGE 15
discusses the current role
of living with multiple
of lenalidomide (Revlimid®)
myeloma since 1981 and
n Spotlight on Advocacy PAGE 15
in multiple myeloma, focus-
appreciating the gift of each
n International Affiliates,
ing on Mayo Clinic's study
day of life. PAGE 18
an update from Europe PAGE 16
of this novel agent in the
n Support Groups from California and Florida
frontline setting and future
Walter Benjamin Reinhold
share their stories PAGE 17
directions for combination therapies. PAGE 9
shares his observations
n Member Events,
Supportive Care
about coping with the
IMFers raise funds to
challenges of myeloma,
benefit the myeloma
community
Learn how other members of the myeloma com-
developing an optimistic
PAGE 20
attitude, and his reasons
munity strive to be "good" patients by following
for investing in the path to a
a few basic practices. PAGE 12
cure. PAGE 19
Looking for a LocaL
IMF Hotline Coordinators offer suggestions that
myeLoma
David Smith, who was
can make the experience of a bone marrow
support group?
recently promoted to the
b i o p s y
newly created position of
If you are interested in joining
procedure
Executive Director, answers
less of an
an existing group please access the
questions about how his
o r d e a l .
professional and personal
website at www.myeloma.org
PAGE 13
experiences prepared him
"Finding Support"
for the responsibilities of
or call the IMF
building upon the successes of the foundation in
at 800-452-CURE (2873).
the core areas of our mission. PAGE 21
This issue of Myeloma Today is supported by Celgene Corporation, Mil ennium Pharmaceuticals, and Ortho Biotech.
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
Hotline Coordinator
Database & Inventory Control
Arin Assero (aassero@myeloma.org)
Paul Hewitt (phewitt@myeloma.org)
Macky Lee (mlee@myeloma.org)
Development Associate
Meeting & Event Services
Suzanne Battaglia (sbattaglia@myeloma.org)
Publication Design
Spencer Howard (showard@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Hotline Coordinator
Publications Editor
Nancy Baxter (nbaxter@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
Director, Medical Meetings & CME Programs
Lisa Paik (lpaik@myeloma.org)
Hotline Coordinator
Executive Assistant
Debbie Birns (dbirns@myeloma.org)
Nancy Kennedy (nkennedy@myeloma.org)
Webmaster
Abbie Rich (arich@myeloma.org)
Director, IMF Europe
Development Assistant
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Missy Klepetar (mklepetar@myeloma.org)
Comptroller
Regional Director, Support Groups Southeast
Jennifer Scarne (jscarne@myeloma.org)
Director, Support Groups Outreach
Andrew Lebkuecher (imfsupport@charter.net)
Kelly Cox (kcox@myeloma.org)
Regional Director, Support Groups Northeast
Specialty Member Services Coordinator
Robin Tuohy (tuohy@snet.net)
Kemo Lee (klee@myeloma.org)
www.myeloma.org
Pl
International aceholder
Myeloma Foundation
Dear Reader,
Spring is traditionally a time of new beginnings, and
vein thrombosis associated with some of the novel
a reminder that anything is possible. At the IMF, this
therapies, and identifying genes linked to myeloma
is definitely a time when new ideas are blossoming
bone disease. The Bank On A Cure team is also
into projects that provide a clear way forward.
investigating why some patients respond to novel
therapies while others don't. For more detailed
The IMF knows that in order to move forward and
information, please see page 6 of this newsletter.
get results you have to be inclusive, move expedi-
tiously, and involve the key players patients, phy-
The NLB was established last year. In essence, the
sicians, and nurses. And that's exactly what we've
NLB is the "link" to optimal care for patients, and
been doing, and achieving amazing results!
that's extremely important. We're very excited
that an abstract that the NLB submitted to the XI
I'd like to take this opportunity to update you on
International Myeloma Workshop has been accept-
some of these projects, such as the US Myeloma
ed! Please see page 11 for a more comprehensive
Forum, Bank On A Cure®, the Nurse Leadership
update on the Board's current activities.
Board (NLB) and, of course, our grassroots outreach
to patients.
Our primary focus is always on patients. The IMF
Susie Novis
reaches out and helps the patient community
The US Myeloma Forum's goal is to bring together
IMF President
through a wide variety of innovative programs and
key opinion leaders from the US to form a coalition
services. We work closely with a large network of
whose goal will be to bring focus to projects by working collaboratively
myeloma support groups and, in April, the IMF is hosting its 8th annual
and reducing duplication of efforts and dilution of valuable resources.
Support Group Leaders Retreat. With hundreds of support groups around
Multiple clinical trials are needed to assess the best impact of the novel
the world representing thousands of patients and caregivers, we're
therapies for myeloma. In order to ensure success, clinical trials must
delighted that we'll once again have representatives from groups across
be organized in a cohesive way to ensure that the final results provide
the US, Canada, and Europe in attendance at this years retreat. Working
clear comparative data. The US Myeloma Forum will provide both critical
closely with support group leaders ensures that they are better able to
input for pharmaceutical trial design and facilitate CTEP review within the
meet the many challenges of running and maintaining a group.
Cooperative Group setting. The discussions by US Myeloma Forum partici-
pants will result in consensus statements and recommendations to bring
To stay informed about the IMF's innovative programs and broad range
clarity to immediate clinical trial priorities, such as how best to integrate
of activities, please stay tuned to future issues of Myeloma Today, visit
novel therapies. Taking a fresh look at all the options will allow for better
the IMF's website regularly, and subscribe to our weekly email letter, the
long-term decisions. The first meeting of the US Myeloma Forum is taking
Myeloma Minute.
place April 1718 in Santa Monica, CA.
Warm regards,
The most exciting news is that Bank On A Cure is showing amazing results!
Susie Novis
Findings to date include identifying genes linked to increased risk of deep
Letters to the IMF
The IMF
IMF Hotline
Thank you so much for all your dedication. I cannot tell you how helpful
I was so pleased with your quick and complete response. I am very thank-
and comforting it is to know that there is an organization such as the IMF,
ful to you. You made my day... I am glad that there are people who are
filled with folks at the service of families dealing with multiple myeloma.
experts in the field of multiple myeloma that we can access. It is the great
Sophie Leguillette
organization of the IMF that makes this possible.
Myeloma Today
Willem Dieperink, MD
Just wanted to write to let you know that I thought the article by Peter
Many thanks for the prompt and detailed response to my question, it was
Tischler Living Successfully with Multiple Myeloma -- was great. It's not
very helpful and reassuring. It is really great to have such easy access to
real technical and demonstrates a plain common sense way of how to deal
advice and information.
with this disease. I have read this article not just once but several times.
David Reed
It's great for newly diagnosed patients!
David Dolinger
800-45-CURE (87)
Board of Directors Profile
myeLoma today in conversation with michaeL katz
What were the circumstances surrounding your
sons that something was very wrong. By this time,
myeloma diagnosis?
they were 17, 20, and 23. They deserved an explana-
In 1989, I felt the first symptoms of myeloma. After
tion, and were old enough to deal with it. The fact
nine months of diagnostic missteps, doctors found
that I'd already had myeloma for 10 years helped
a grapefruit-sized plasmacytoma that had broken
them put it into perspective. They understood that
through the back of my pelvis. A surgeon removed
this was something I would be able to fight.
the tumor and replaced the damaged bone with a
Did you share your diagnosis outside the family?
graft from a bone bank. After radiation and a year of
physical therapy, I was pretty much back to normal.
After the skull tumor ordeal, my diagnosis became
more widely known at work, a global management
At that point did you think that your troubles
consulting firm. One morning, I received a call from
were over?
our chairman. He told me that I was a nominee for
I was not told and did not understand that I had an
a seat on the company's board but, just before the
incurable disease. In 1991, microfractures appeared
vote was taken, someone spoke of my illness. He
above the hip joint, so I had another biopsy, after
was calling to ask if this information was true, and if
which I heard the words "multiple myeloma" for
I would be able to serve if elected. I confirmed that
the first time. The IMF did not exist then. There was
I did have myeloma but felt fine, was carrying a full
no Internet. It took me six months to find another
Michael S. Katz
client load, and was confident that I could serve. I
patient with myeloma. The man was not very helpful
was elected to the board. To his credit, the chair-
but he mentioned a book, Going for the Cure, writ-
man made the call instead of simply assuming that
ten by Francesca Thompson, a myeloma patient and orthopedic surgeon.
a person living with cancer could not handle a responsible position.
I wrote her a letter asking about the bone issues I was having. She called
Please tell us about your involvement with the myeloma
me and we spoke for over an hour.
community outside the IMF.
How did you become involved with the International Myeloma
Besides the ListServ, I run two in-person myeloma support groups. I serve
Foundation?
as a patient consultant to the FDA. I was a charter member of, and later
Francesca told me about a doctor in England named Brian Durie, so I used
chaired, the NCI Director's Consumer Liaison Group. I co-chair the Patient
my frequent flyer miles to get myself to London. After we got the medical
Representative Committee at the Eastern Cooperative Oncology Group
business out of the way, Dr. Durie told me about the IMF and put me in
(ECOG), which conducts large-scale, national clinical trials. I also served
touch with its co-founder, Brian Novis. In 1993, I flew to Los Angeles to
on the National Cancer Advisory Board's Clinical Trials Working Group.
attend the first IMF Patient & Family Seminar. I volunteered to help the
What is your current outlook?
IMF, setting up its computer database, building the website, and writing
the first Patient Handbook. Fellow patient June Brazil and I founded the
Myeloma is a terrible disease but I try to live my life as if I didn't have it.
Multiple Myeloma ListServ, which provides an online forum for patients
I'm very involved with my family and my children. I love the opera. I'm
and caregivers. As I became more and more involved, I was asked to join
active in my synagogue and served as its president. I earn a living as a man-
the Board of Directors and then the Executive Committee.
agement consultant. I travel frequently, for both business and pleasure. I
may ache when I walk, but I power through. It hasn't been easy but I know
Please tell us about your decision to keep your diagnosis private.
that taking the easy way out is habit-forming.
I was 37 years old. My sons were 7, 9, and 12. While the diagnosis was
The help that I've received from Francesca Thompson, Brian Durie, Susie
devastating, the prognosis was pretty good even all those years ago, and
Novis, Brian Novis, Bob Kyle, and others has enabled me to live the life
it was not likely I'd die any time soon. My wife and I decided that our
that I am now living. I feel an obligation to help others, so I devote a lot of
best strategy was to try and live as normal a life as possible. We chose
time and energy to the IMF and the myeloma community at large.
not to tell our family, friends, or business associates. We did not tell our
children because there was no reason to burden them with thoughts of
In the years since my diagnosis, the landscape for myeloma has changed
their parents getting sick and dying. This proved to be a winning strategy
tremendously, and the IMF has played an instrumental role in that. Each
for 10 years.
year, there are more and better treatment options available to manage
myeloma. And the IMF's wide range of services supports the patient com-
Why did your strateg y change?
munity in ways that I could not have imagined when I was diagnosed. I'm
Over the first 10 years post-diagnosis, we were able to keep the disease
so proud to be a part of the International Myeloma Foundation. mt
under control with a variety of treatments. In the tenth year, I developed a
tumor at the base of my skull. I was in horrible pain. It was obvious to my
4
www.myeloma.org
Scientific Advisor Profile
myeLoma today in conversation with prof. meLetios dimopouLos
Please tell us a little about your background and
that transplantation is a very useful modality.
medical training.
The novel agents can help increase the number
I was born in France but was raised in Greece. I
of patients who achieve an initial response and
received my medical degree from the University of
are then able to proceed to high-dose therapy.
Athens School of Medicine, did my internship at the
Several studies indicate that thalidomide is an
V.A. General Hospital in Athens, and completed my res-
important agent after autologous transplanta-
idency in Canada at the Royal Victoria Hospital, McGill
tion. Other studies are investigating other novel
University. In 1988, I went on to do my fellowship in
agents in similar settings. In my opinion, it is
hematology/oncology at the M.D. Anderson Cancer
premature to think of abandoning high-dose
Center in Texas. There, I worked with a very important
therapy. Instead, we need to continue to explore
figure in the field of myeloma, Dr. Raymond Alexanian.
how best to use novel agents before and after
Among his many achievements, in 1968 he was one of
transplantation.
the first doctors to describe an effective treatment for
As Chairman of the organizing committee of
myeloma, a combination of melphalan and prednisone.
the XIth International Myeloma Workshop,
I was inspired by his devotion, so I became involved in
what can you tell us about this upcoming
clinical research in the field. Currently, I am Professor
meeting?
and Chairman, Department of Clinical Therapeutics,
University of Athens School of Medicine.
The XIth International Myeloma Workshop
Meletios A. Dimopoulos, MD
(IMW) will be held in Kos, Greece, from June
How did you become involved with the IMF?
University of Athens School of Medicine
25th to 30th, 2007. The IVth International Work
Alexandra Hospital
I joined the IMF Scientific Advisory Board in 1992, not
shop on Waldenstrom's Macroglobulinemia will
Athens, Greece
long after this innovative foundation was formed. From
directly follow the myeloma workshop. The
its inception, besides providing support and education to the myeloma
beautiful island of Kos is the home of Hippocrates, the ancient Greek
patient community, the IMF has provided physicians with an important
physician called "the father of medicine." This environment seems ideal to
opportunity to exchange opinions. Over the years that have followed,
host the upcoming workshop, as it will give the attendees an opportunity
under the leadership of Drs. Brian Durie and Robert Kyle, the IMF has had
to participate in the intense scientific program and to exchange ideas,
many accomplishment; one such current achievement is the recently pub-
opinions, and data regarding the treatment of myeloma in a pleasant and
lished new response criteria that have been actively endorsed by the medi-
relaxing atmosphere.
cal community throughout the world, including at our center in Athens.
Given the developments in the field of myeloma since the last IMW
What is the current focus of your myeloma research?
in 2005, how will the Kos workshop address those advancements?
I am actively involved in several clinical trials investigating the best
Our scientific advisory board, a panel of world-renowned experts in the
approaches of using novel agents in relapsed/refractory setting. I am also
field, has devised a scientific program that focuses on the latest advances
studying the effect of novel agents on bone metabolism. My center is very
in the genetics, pathophysiology, diagnosis, and management of myeloma.
much involved in autologous transplantation for myeloma, so I am also
There are 75 invited speakers and 25 planned oral presentations. In addi-
studying the role of novel agents before and after high-dose therapy. In
tion, the workshop will feature abstracts selected from the more than 500
addition, I am investigating new agents for the treatment of amyloidosis.
submitted, the highest number in IMW history.
How has the advent of novel agents for myeloma changed the
The latest data on the use of thalidomide, lenalidomide, and bortezomib
treatment landscape?
will be presented, along with the results of several randomized trials that
were not yet ready for presentation at ASH in December of 2006. I am very
Since 1999, when Dr. Barlogie's group reported on the significant activ-
excited about the prospect of significant new knowledge to be presented
ity of thalidomide in patients with relapsed/refractory myeloma, we have
and I am confident that the Kos workshop will bring us closer to our goal,
seen continuous and important advances in the field. There are now three
the cure of both myeloma and Waldenstrom's macroglobulinemia.
novel agents that we can use to help our patients and, in the next few
mt
years, we expect to add more agents to our existing treatment arsenal.
Editor's Note: Dr. Dimopoulos is a member of numerous scientific societies
Several exciting early-phase clinical trials are ongoing at major myeloma
and has authored more than 300 publications in peer-reviewed journals,
centers around the world. We in the scientific community share the opin-
as well as numerous abstracts and several textbook chapters. He is a
ion that the survival of myeloma patients is improving, and we are steadily
journal reviewer for several journals, including New England Journal of
moving through a process of transforming myeloma from a terminal dis-
Medicine, Blood, Journal of Clinical Oncology, Haematologica, Leukemia,
Cancer, European Journal of Haematology, and Leukemia & Lymphoma.
ease into a chronic condition.
Dr. Dimopoulos is an Associate Editor of the European Journal of Internal
Medicine and of Current Hematologic Malignancy Reports, and is an
Have the novel agents changed the role of transplantation in
Editorial Board Member of the Journal of Clinical Oncology and of
myeloma?
Haematologica. Dr. Dimopoulos is a member of the European Myeloma
There is a significant and important role for autologous transplantation
Network, and is the recipient of the Robert A. Kyle Award for outstanding
in myeloma, at least for patients 70 years of age and younger. I believe
contributions to Waldenstrom's macroglobulinemia.
800-45-CURE (87)
5
Scientific & Clinical
Bank on a cure® update
Myeloma Today in conversation with Dr. Brian Durie
What is the status of the initial phases of the
more rapid responses to thalidomide are associated
IMF's Bank On A Cure® project?
with higher risk of VTEs. It is important to note that
Bank On A Cure® is the world's first repository
VTEs were not associated with any of the blood
of DNA created to advance the understanding of
clotting genes, which supports the notion that
myeloma. The initial phases of this research proj-
aspirin can be helpful as a prophylactic treatment
ect, co-chaired by Drs. Gareth Morgan (Institute of
for VTEs.
Cancer Research, Royal Marsden Hospital, London)
These Bank On A Cure research findings were
and Brian Van Ness (Institute of Human Genetics,
presented at the annual meeting of the American
University of Minnesota, Minneapolis), have been
Society for Hematology (ASH) in December of 2006,
completed. We have developed a myeloma-specific
and a manuscript is now being finalized for publi-
single nucleotide polymorphism (SNP) chip. Once
cation, with Gareth Morgan as the senior author.
the custom chip was created, it took several months
An update will be presented at the International
to get the Affymetrix machines (which run the chip)
Myeloma Workshop (IMW) in June of 2007. This
set up and standardized, both in the US and in the
will be one of two Bank On A Cure oral presenta-
UK, and to get technicians familiarized with the
tions to take place at the IMW meeting in Greece.
process. Currently, the DNA samples collected from
several large clinical trials in the US and in Europe
What is the focus of the second research
are being analyzed.
Brian G.M. Durie, MD
project to be presented at the IMW meeting?
Aptium Oncology
Dr. Van Ness is working on a paper about the devel-
Can you briefly explain what SNPs are and how Cedars-Sinai Comprehensive Cancer Center opment of our custom SNP chip evaluating the rela-
the custom chip works?
Los Angeles, California
tionships to survival and outcome. He is looking for
Single nucleotide polymorphisms (SNPs) are genetic
SNPs associated with event-free survival in patients
variations in DNA sequences, which can affect how we develop diseases
in two large clinical trials. Early analysis indicates that there may be detect-
and respond to pathogens, chemicals, drugs, etc. Our Affymetrix machines
able genetic differences between short- and long-term survivors, and that
are designed to process and analyze SNPs. While it is now possible to
it may be possible to predict which patients will need more aggressive
screen the human genome for half a million combinations of genes, such
therapies when they start their treatment. He is also comparing SNPs of
a process would be hugely cumbersome, so we have decided that it is
people who have myeloma with those who do not.
much more efficient to target a smaller group of SNPs that is more likely
to be relevant in myeloma. To proceed with a more focused and targeted
Can you tell us about the Bank On A Cure research projects you
approach, the Bank On A Cure research team helped select the 3,404
recently completed?
SNPs associated with gene functions that we think are most relevant to
I looked at the impact of genetic variation on bone disease, focusing on
the regulation of myeloma growth, disease progression, response to treat-
SNPs that correlate with the likelihood that a myeloma patient would get
ment, drug metabolism, bone microenvironment, immune responses,
bone disease. We analyzed genes related to various end points within the
DNA repair, and predisposition to side effects like neuropathy, mucositis,
data set from the 256 myeloma patients who were enrolled in Total Therapy
or deep vein thrombosis (DVT). Our custom chip includes all the major
II (TT II), a clinical trial by Drs. Bart Barlogie and John Shaughnessy at
sequences where a change in the gene can relate to myeloma.
the Myeloma Institute for Research and Therapy in Little Rock, AR. When
it comes to accurately documenting the presence or absence of bone
Can you give us an example of a discovery made from the data
disease, the TT II data set is the strongest anywhere in the world because
processed so far?
all 256 patients got whole body x-ray and MRI plus PET imaging studies
One of the Bank On A Cure projects sought to identify genetic pathways
performed as necessary. In this Bank On A Cure study, we found that
that may explain why an estimated 15% to 30% of myeloma patients
there are several SNPs related to bone disease, four of them linked to the
treated with thalidomide suffer venous thromboembolisms (VTEs), or
production of a peptide that enhances the formation of osteoclasts, MIP1-
blood clots, as a major complication. We looked at data on 394 myeloma
alpha. The SNP data analysis is now complete, and we have developed a
patients produced from three clinical trials, two performed in Europe and
prognostic tool to help evaluate whether a myeloma patient is likely to get
one in the US. We identified four gene clusters associated with the VTEs. It
bone disease. A paper on the subject is being prepared.
was discovered that the risk of developing VTEs while on thalidomide was
mostly related to the genes that control inflammation, with IL6 and TNF
What's next for Bank On A Cure?
shown to be the main cytokines to influence inflammation within blood
There are many exciting research projects emanating from the Bank On
vessels. Other genes related to drug processing and metabolism have
A Cure DNA repository. Readers of Myeloma Today should stay tuned for
also been linked to the risk of VTEs, which might relate to how quickly
further developments, which will also be disseminated through the IMF's
a patient responds to treatment. If a patient has a dramatic response to
weekly email updates, Myeloma Minute, as well as the IMF website website
thalidomide, the rapid release of all of the products from the breakdown
www.myeloma.org. mt
of the dying myeloma cells can promote clotting via inflammation. So, the
www.myeloma.org
Scientific & Clinical
the roLe of veLcade® pLus doXiL® in muLtipLe myeLoma
Myeloma Today in conversation with Dr. Robert Orlowski
What is the focus of your research work?
(1.3 mg/m2 on days 1, 4, 8, and 11 of every 21-day
My approach is to understand the molecular patho-
cycle), and the other received the same dose and
genesis of oncologic diseases, and also to dissect
schedule of VELCADE plus DOXIL (30 mg/m2 given
the mechanisms of action of chemotherapeutics.
on day 4 of each cycle). The two study arms were
The former will identify new cellular targets for
well balanced;on average patients were diagnosed
therapeutic intervention, and possibly also for dis-
at least three years prior to enrolling; almost all
ease prevention. The latter promotes the develop-
had been on treatments involving steroids; 90%
ment of rational drug combinations with enhanced
had received alkylating agents; two thirds had
efficacy, and may allow targeting of chemotherapy
anthracyclines; about 40% had thalidomide or
regimens to patients who are most likely to ben-
lenalidomide; and over 50% had a prior stem cell
efit based on the biology of their own disease.
transplant.
Ultimately, the goal is to translate the knowledge
The primary study endpoint was TTP (time to pro-
garnered from these basic science and preclinical
gression), and an interim analysis was planned, the
studies into the clinic, and to provide new, effec-
results of which formed the basis for our report. A
tive treatment options for patients afflicted with
highly statistically significant improvement in medi-
multiple myeloma. The current line of investiga-
an TTP to 9.3 months was achieved for patients
tion being pursued by my laboratory and clinical
receiving VELCADE plus DOXIL, as compared with
research groups has focused on the proteasome as
Robert Z. Orlowski, MD, PhD
a TTP of 6.5 months for VELCADE alone.
a target for cancer therapy and in the mechanisms
Lineberger Comprehensive Cancer Center
by which inhibitors of this complex induce apopto-
University of North Carolina at Chapel Hill
Also, in this interim analysis, a trend was emerging
sis, or programmed cell death.
Chapel Hill, NC
for a better survival on the combination therapy.
That data is not yet mature, but there will be fol-
You are the overall study chair for two myeloma clinical trials of
low-up studies presented in the future. In the meantime, the main mes-
VELCADE® plus DOXIL®. What can you tell our readers about these
sage for patients with relapsed/refractory disease is that the VELCADE plus
two drugs?
DOXIL combination may be an excellent treatment option for them that
VELCADE (bortezomib for injection) is indicated for the treatment of
seems to provide a better outcome than VELCADE alone.
patients with myeloma who have received at least one prior therapy based
on data showing single agent VELCADE extended survival of patients with
Did some patients benefit more from the combination than others?
previously treated myeloma compared with patients treated with standard
We looked at different subsets of patients and we found that just about
dexamethasone.
every patient sub-group benefited more from the combination, compared
with VELCADE alone. This included both younger and older patients,
DOXIL (doxorubicin HCl liposome injection) is currently indicated for
those who had a transplant and those who did not, patients with cytoge-
the treatment of patients with ovarian cancer and Kaposi's sarcoma.
netic abnormalities other than deletion of chromosome 13, those who had
Doxorubicin is an established chemotherapeutic that has been used for
received thalidomide and/or lenalidomide and those who did not, as well
years. In DOXIL, the drug has been put into small lipid capsules so it stays
as patients who had an elevated beta-2 microglobulin, which is usually a
in the circulation for a longer period of time, and is therefore available
poor prognostic finding.
to kill cancer cells over a longer period of time. This also makes the drug
safer from a cardiac perspective, may allow it to overcome drug resistance
Are there benefits to this regimen being free of steroids?
compared with plain doxorubicin, and offers better delivery to tumor
There are many people who are not able to take steroids because of dia-
vasculature.
betes, or because of their many and often severe side effects. In fact, in
The reason we've put these two drugs together is because there was
my practice, I have seen more patients having problems with high-dose
data from a number of research groups that VELCADE enhanced the
steroids than with many of the other drugs that we use. Also, patients
anti-myeloma activity of doxorubicin, and from our group that DOXIL
who have been taking dexamethasone with either thalidomide or lenalido-
enhanced VELCADE's anti-tumor efficacy.
mide have shown an increased occurrence of blood clots and pulmonary
emboli, and therefore have to take some type of blood thinning agent,
What can you tell us about the phase III study you presented at
which itself increases risks. VELCADE, either alone or with DOXIL, had a
ASH this past December?
very low incidence of this side effect at 1%, and patients do not therefore
We had previously completed a phase I clinical trial which showed that
need prophylactic blood thinning products.
the VELCADE plus DOXIL combination was well tolerated by patients, and
What about side effects?
there was evidence to suggest that the combination was more effective
than VELCADE alone. To more fully test if this was the case, we designed
Often, when two or more drugs are combined, there is a tendency for an
a randomized study. This phase III international multicenter trial random-
increase in toxicity. We observed some increases in gastrointestinal side
ized 646 relapsed myeloma patients who had received at least one prior
effects, such as nausea, diarrhea, and vomiting. There was a slight increase
therapy. One group received the standard dose and schedule of VELCADE
Continues on Page 8
800-45-CURE (87)
7
Scientific & Clinical
VELCADE® PLUS DOXIL® -- continued from previous page
in thrombocytopenia and neutropenia (low platelet and white blood
lenalidomide plus dexamethasone I have them come once a week to have
counts), bleeding, as well as fatigue and anemia. DOXIL can also cause sto-
their blood counts and/or INR (international normalized ratio) checked.
matitis, or mouth sores, and hand/foot syndrome, where redness develops
Therefore, they still see me several times a month, and there isn't as big
of the palms or the soles and, in more severe cases, cracking and blistering
difference between that and coming in for VELCADE and DOXIL, which
of the skin can occur. About 5% of the study patients experienced this side
requires four treatment visit per cycle.
effect, which was managed by reducing the dose of DOXIL or by stopping
it altogether. It is important to note, however, that the combination of
Expense is certainly another important feature of cancer therapy. Much of
VELCADE plus DOXIL does not show an increase in the incidence of neu-
these reimbursement issue depends on the type and extent of insurance
ropathy, and the rate of grade 3 or 4 neuropathy was actually lower with
coverage that a patient has, and are often different for every individual.
VELCADE plus DOXIL than with VELCADE alone: 4% as opposed to 9%.
Patients who come to an office for VELCADE plus DOXIL may have to
Also, there was no increased risk of cardiac effects such as congestive heart
make co-pay payments, but the drugs are usually covered by insurance.
failure with the combination compared with VELCADE alone.
For patients on lenalidomide plus dexamethasone, they have to deal with
the expense of the drugs, and not everyone can afford the treatment,
What can you tell us about the results thus far from the phase II
given the Medicare "donut hole" when no insurance for prescription
study of VELCADE plus DOXIL as initial therapy for patients with
drugs is available.
symptomatic myeloma?
Currently, what else are you seeing on the myeloma landscape that
Since patients with relapsed myeloma tend to have disease that is more
warrants attention?
resistant to therapy, we thought that VELCADE and DOXIL could be espe-
cially active as an initial treatment, and again avoid the use of steroid. At
At the most recent meeting of the American Society of Hematology, there
the time of the ASH presentation, we had preliminary data on 57 of the
was very nice data presented in relapsed/refractory myeloma with two
63 patients involved in this phase II study. The toxicity results were pre-
other VELCADE-based combinations that were in early-phase trials. These
dictable, based on what we've seen in both the phase I and III trials, and
included VELCADE with Revlimid, and VELCADE with the heat shock pro-
there were no unusual problems observed. In the 29 patients who had
tein 90 inhibitor tanespimycin.
completed their course of treatment, there was a complete response (CR)
A third drug that is very interesting is CNTO 328, a chimeric antibody
rate of 28% and an overall response rate (ORR) of 78%. For a two-drug
against interleukin-6, which is an important survival and growth factor
regimen without steroids, this was a very encouraging response rate.
for myeloma cells. This drug is a protein molecule with a very favorable
toxicity profile, and we have now started a phase II study of this agent in
How does the VELCADE plus DOXIL upfront therapy compare to
combination with VELCADE because laboratory data shows the combina-
other VELCADE combinations, and other oral combinations?
tion to be synergistic. Finally, I am very encouraged by our initial phase I
VELCADE is being studied in several trials with dexamethasone where it
data with the novel proteasome inhibitor PR-171, or carfilzomib. PR-171 is
has shown encouraging activity as an upfront therapy. Also, both Thalomid
a second-generation proteasome inhibitor that, so far, has been tolerated
with dexamethasone and Revlimid with dexamethasone are very active
very well by patients without, unlike VELCADE, any significant episodes of
induction regimens. Our follow-up with VELCADE plus DOXIL is still too
neuropathy. We have even seen activity in patients who have been refrac-
short to make accurate comparisons with these other, more established
tory to VELCADE, and phase II studies of this drug have been planned.
regimens. However, the response rate is encouraging, and the fact that it
does not seem to compromise stem cell collection makes it attractive as an
What message would you like to send to the myeloma patient
option for newly diagnosed patients who cannot tolerate steroids, or have
community?
some contraindications for thalidomide or lenalidomide.
Multiple myeloma continues to be an incurable disease, but the number
of options available to patients and their healthcare providers now is
What about the relapsed/refractory patient?
greater than it has ever been. With this array of treatment options at
For the relapsed/refractory patient, the good news is that we now have
hand, people are living longer and with a better quality of life, and
three phase III studies that show that there are excellent options: lenalido-
that is very encouraging. Also, we understand more about the disease
mide plus dexamethasone, VELCADE alone, and VELCADE. Additional
now than we have ever had before, and this has identified many more
analyses of these studies will be needed, as well as some further trials, to
therapeutic targets to go after, and we have more drugs with which to hit
see if we can identify certain patient populations who would most benefit
these targets. Finally, our laboratory models for myeloma are improving,
from one or another of these options, or if there is an optimal sequence
which means that we are more likely to be successful with our clinical
in which these therapies should be used. In practice, most patients will
trials. The trend for new drugs and new combinations of drugs is
probably get all of these therapies at one point or another, and the good
going to continue and, over time, this will bring us closer to curing this
news is that all of them prolong survival.
disease. mt
Can you speak about the relative convenience of oral vs.
Editor's Note: Dr. Orlowski is the Lenvel Lee Rothrock Associate Professor of
intravenous therapies, as well as reimbursement issues?
Medicine, Division of Hematology/Oncology, and of Pharmacology, at the
University of North Carolina at Chapel Hill. He is the 2006 Leukemia and
Sometimes, one advantage of an oral regimen is that a patient can take
Lymphoma Society Man of the Year. Dr. Orlowski has authored numerous
it at home, so there may be fewer visits to the physician's office than
published book chapters, articles, commentaries, and abstracts.
with an intravenous combination. However, one has to also factor into
this the need for increased monitoring, and when I first put patients on
8
www.myeloma.org
Scientific & Clinical
update on revLimid® for the treatment of myeLoma
Myeloma Today in conversation with Dr. S. Vincent Rajkumar
What is the current role of Revlimid® in myeloma?
and cytogenetic risk factors such as metaphase
Lenalidomide (Revlimid®) is currently approved in the
deletion 13, hypodiploidy, translocations 4;14
US for use in myeloma patients who have received at
or 14;16, and deletion 17p. Compared with cur-
least one prior therapy. This approval was based on two
rent regimens for newly diagnosed myeloma,
Phase III clinical trials, one in the US and one in Europe,
lenalidomide plus low-dose dex has shown high
which compared the combination of lenalidomide plus
activity and low toxicity, and the Mayo group is
dexamethasone (dex) to dex plus placebo. These tri-
now recommending this approach as one of our
als showed improved time to progression (TTP) and
standard frontline regimens. For patients pro-
response rates. As happened with thalidomide earlier,
ceeding to transplantation, we feel that lenalido-
lenalidomide then became an attractive candidate for
mide plus low-dose dex may be the safest and
frontline therapy.
most effective therapy to get them to the point of
transplant.
Can you tell us about the Mayo Clinic study of
lenalidomide as frontline therapy?
Do you follow guidelines for DVT
prophylaxis?
We studied the combination of lenalidomide plus dex in
34 patients with newly diagnosed myeloma. The initial
We know that there are at least three factors
results, published in Blood, showed a response rate of
that increase the risk of DVT when patients take
91%. At the annual meeting of the American Society for
lenalidomide plus dex (and likely for thalidomide
Hematology (ASH) in December of 2006, it was showed
plus dex as well). The first is the use of chemo-
that these responses were durable. Overal , 56% of
therapy drugs, such as doxorubicin or liposomal
S. Vincent Rajkumar, MD
patients achieved very good partial response (VGPR)
doxorubicin. The second is how much steroid is
Professor of Medicine
or better. Of the 21 patients who stayed on this therapy
being used -- it is clear that high-dose dex carries
Mayo Clinic College of Medicine
without proceeding to transplant, the rate was even
an increased risk of DVT, compared with low-
Rochester, MN
higher -- 67% achieved VGPR or better. Our study also
dose dex or no dex. The third is the use of eryth-
showed that the average TTP was approximately 30 months. These results
ropoietin. Because DVT risk can be in the 20% range, if a patient taking
are comparable to what has been reported with single autologous trans-
lenalidomide plus dex has any of those three risk factors, we recommend
plantation for myeloma, making it important that studies be conducted
anticoagulants such as warfarin or low- molecular-weight heparin. If a
comparing novel therapies with transplantation.
patient has none of these risk factors and is taking lenalidomide plus low-
dose dex, aspirin should be enough as a prophylaxis. To settle the ongoing
What about the risks of side effects?
debate of which prophylaxis is most effective, there is an active random-
The Mayo Clinic's lenalidomide plus dex study used the standard high-
ized trial currently accruing patients in the US that's comparing aspirin vs.
dose dex (40mg on days 1-4, 9-12, 17-20). Dex is associated with a high
warfarin with lenalidomide plus high-dose dex as frontline therapy.
risk of side effects, so an Eastern Cooperative Oncology Group (ECOG)
What are the future directions for lenalidomide combination
trial was mounted to look at whether the dex dose can be reduced in
therapies?
order to reduce toxicity without sacrificing much in the way of efficacy.
The ECOG study compared lenalidomide plus standard high-dose dex
Dr. Antonio Palumbo's group in Italy has reported the results of their
with a kinder, gentler combination regimen where dex was given once a
multi-center trial of lenalidomide plus melphalan and prednisone (R-
week (40mg on days 1, 8, 15, 22). The trial results are awaited but, at ASH
MP) for newly diagnosed myeloma patients 65 years of age and older. A
last year, I was able to present reports on adverse events and early mortal-
significant response rate was observed, and R-MP was well tolerated with
ity. The data from the low-dose dex arm of the study look very promising,
low toxicity. Also, they have found that just one cycle of R-MP is equivalent
and the incidence of all side effects was lower. Surprisingly, this included
to six cycles of MP alone in terms of rapidity of response. This regimen has
significantly lower incidence of deep vein thrombosis (DVT). Early mortal-
been highly effective for elderly myeloma patients who are not proceeding
ity, defined as any death resulting from any cause occurring within the
to transplant. There is an ECOG led Phase III trial scheduled to open soon
first four months, was low in both arms of the ECOG study: 0.5% in the
in the Untied States comparing R-MP and MPT.
low-dose arm and 4.7% in the high-dose arm of the study. By the way,
Dr. Paul Richardson of the Dana-Farber Cancer Institute has found that
early mortality in myeloma is not fully appreciated as a problem. When
lenalidomide plus bortezomib (VELCADE®) for relapsed/refractory dis-
one considers early mortality, it is important to derive rates from trials
ease produces a high response rate among patient who had failed multiple
that are large enough and that do not restrict trial entry only to transplant
regimens, including bortezomib alone. There is interest in developing
candidates (because this is a very select population of myeloma patients).
lenalidomide/bortezomib as frontline therapy. There have been some
Ideally, early-mortality rates can be studied when the data is derived
interesting study results already, and more trials are about to open. A
from Phase III studies that do not restrict trial entry based on transplant-
Phase III ECOG trial comparing bortezomib, lenalidomide, and dex (VRD)
eligibility. When we look at studies like that, we find that early mortality
to bortezomib plus dex (VD) is opening soon, with the goal of developing
associated with myeloma therapy is about 11% with dex alone, 8% with
an alternative to transplant. It is possible that we will soon develop a regi-
melphalan and prednisone (MP), 7% with thalidomide plus dex, and 3%
men relegating transplantation to second-line therapy.
with melphalan, prednisone, and thalidomide (MPT).
Of course, the next question is whether we can add alkylating agents to
Recently, our team of 18 Mayo Clinic myeloma experts endorsed an algo-
create the ultimate drug cocktail. Several published studies show prom-
rithm on what therapy could generally be recommended for newly diag-
ising results, and additional trials are planned. In terms of active trials,
nosed patients. The resulting consensus statement, known as mSMART
we are awaiting the efficacy results of the ECOG trial, and anticipating
(Mayo stratification of myeloma and risk-adapted therapy), offers a logical
the results of the SWOG trial comparing lenalidomide plus dex to dex
step-by-step procedure for decision-making based on transplant eligibility
alone. mt
800-45-CURE (87)
Scientific & Clinical
IMF WElCOMES NEW SCIENTIFIC ADvISORS
Hermann Einsele, MD
Orhan Sezer, MD
Andrew Spencer, MD
H e r m a n n
Orhan Sezer is
Andrew Spencer is Associate
Einsele
is
a graduate of
Professor
and
Senior
head of the
the University
Specialist in the Department
Clinic of the
School
of
of Clinical Haematology
University of
Medicine
in
and BMT, and Head of the
W ü r z b u r g ,
G ö t t i n g e n ,
Myeloma Research Group,
G e r m a n y .
Germany, where
Alfred Hospital, Australia.
Dr. Einsele's
he later received
He is an Associate Professor
strong inter-
a
doctoral
of Medicine at Monash
d i s c i p l i n -
degree in patho-
University. Active in both
ary team of
physiology. Dr.
translational and clinical
researchers
Sezer worked at
research, Dr. Spencer has
is focusing on a variety of clinical trials, the Institute of Experimental Pharmacology, a particular interest in drug resistance mechanisms,
ranging from the new RAD regimen to Freie Universität Berlin, where he performed murine tumor models, and novel therapeutic approaches
innovative in vitro studies. Prior to coming research on signal transduction. He is board for myeloma. He serves on the Australasian Leukaemia
to Würzburg, Dr. Einsele spent years at the certified in internal medicine, hematol-
and Lymphoma Group (ALLG) and is Chairman of the
University of Tübingen, from medical school ogy, and medical oncology. A Professor of ALLG Myeloma Disease Subcommittee. Dr. Spencer
through a number of roles culminating in Medicine in hematology/oncology at the is a member of the Medical Advisory Group for the
Managing Director of the Medical Clinic. In University Clinic of Berlin, Dr. Sezer is the Australian Myeloma Foundation and the National Medical
addition to Tübingen, Dr. Einsele has stud-
head of the Multiple Myeloma Group in and Scientific Advisory committee for the Leukaemia
ied in Manchester and London, England, Berlin. His main research fields are multiple Foundation of Australia. He is principal investigator for
and conducted research at the Max Planck myeloma and malignant lymphomas, with numerous multi-center clinical trials in both myeloma
Institute for Biochemistry in Martinsried, special emphasis on myeloma bone disease, and non-Hodgkin's lymphoma, and has extensive experi-
Germany, and the Fred Hutchinson Cancer angiogenesis, targeted therapies, and quality ence as an advisor to the pharmaceutical industry with a
Center in Seattle, Washington, USA.
of life research.
particular emphasis on novel drug development. mt
News & Notes
IMF Rated #1 Resource for Patients
age-adjusted to the 2000 U.S. population standard, affecting the compa-
The IMF is "the number one resource" for individual patients as well as for
rability of data and results in the rates of cancer incidence and mortality,
leaders of regional support groups, according to an independent survey
rates at different ages, magnitude of improvement in cancer, and racial
conducted by Target Research Group. The IMF ranked number one in
and ethnic differences. To learn more about these statistics, please visit
providing a wide range of publications, in-depth educational seminars,
www.cancer.org/statistics. The increase in number of cases of myeloma in
information on clinical trials, and helpful resources such as a user-friendly
2006 is thought to be because of new methods of data collection; the old
website and a dedicated staff. The survey also found that the IMF excels
method underrepresented the incidence.
in areas that matter most to patients: being extremely knowledgeable
XIth International Myeloma Workshop Awaits
about issues related to myeloma, having up-to-date information, and put-
Record Number of Participants in Greece
ting the needs of patients and caregivers as the first priority. Steve Cook,
president and CEO of Target Research noted, "During my 35-plus years in
the industry, I don't ever recall seeing positive scores that were so much
higher than the other organizations surveyed on virtually all dimensions."
As expected for a foundation dedicated to patient support, the IMF ranked
second as a research-oriented organization. The survey included more
From June 25th through June 30th, 2007, myeloma scientists and clini-
than 600 individuals and 59 people who lead independent myeloma sup-
cians from around the world will gather on the beautiful island of Kos,
port groups across the US.
Greece, to attend the XIth International Myeloma Workshop. The IVth
International Workshop on Waldenstrom's Macroglobulinemia will take
New American Cancer Society Statistics
place as well. An important event in the fields of multiple myeloma and
The American Cancer Society (ACS) tracks cancer occurrence, the number
Waldenstrom's Macroglobulinemia, the workshop will provide a scientific
of deaths, new cases, and how long people survive after diagnosis. The
program focusing on the significant advances in the biology and treatment
2007 ACS statistics, which include data for the past year, report 19,900
of both diseases. The workshop's Organizing Committee is chaired by IMF
estimated new cases in the United States in 2006. The ACS data has been
Scientific Advisor, Prof. Meletios A.K. Dimopoulos. mt
10
www.myeloma.org
Nurse Leadership Board
nLB activities update
Page Bertolotti, RN, OCN
Cedars-Sinai Medical Center
Samuel Oschin Comprehensive Cancer Institute
By Diane Moran
Los Angeles, CA
Elizabeth Billoti, ANCP, ONP, AOCN
St. Vincent's Hospital
The mission of the IMF
wil review and update the
Nurse Leadership Board
Consensus Document on an
New York, NY
(NLB) is to improve the care
ongoing basis and will expand
Kathleen Colson, RN, BSN, BS
of multiple myeloma patients
the topics as progress is made
Dana-Farber Cancer Institute
at the nursing level. The NLB is
in the field.
Boston, MA
comprised of oncology nurses
Dissemination of the guide-
Kathleen Curran, RN, BSN, BS
from leading oncology centers
University of Pittsburgh
lines is an essential part of the
treating myeloma in the United
Pittsburgh, PA 15232
strategy of improving the nurs-
States, and focuses on a wide
Deborah Doss, RN, OCN
ing care of myeloma patients
range of nursing care delivery,
Dana-Farber Cancer Institute
and, to that end, the NLB
Boston, MA
including patient education,
recently finalized a patient
Beth Faiman, RN, MSN CNP, AOCN
counseling, and treatment
education slide kit and is cur-
Cleveland Clinic
management.
rently finalizing the nurse edu-
Taussig Cancer Center
Cleveland, OH
The NLB's first mandate is to
cation slide kit, and building
develop and disseminate con-
a plan to educate the nursing
Maria Gavino, RN, BSN
MD Anderson Cancer Center
sensus guidelines on the nurs-
community nationwide. The
Houston, TX
ing management of side effects
launch of this educational
Diane Moran, RN, MA, EdM
Teresa Jahns Miceli, RN, BSN
patients may experience when
IMF Senior Vice President
endeavor to disseminate the
Mayo Clinic
taking novel therapies to treat
guidelines will take place at
Rochester, MN
their myeloma. Providing management guidelines
the IMF Satel ite Symposium held during the
Bonnie Jenkins, RN, OCN
to nurses who care for myeloma patients will help
Oncology Nurses Society annual meeting in April
University of Arkansas for Medical Sciences
ensure that patients receive optimal treatment and
in Las Vegas, Nevada. In addition, the upcoming
Little Rock, AR
supportive care related to the management of side
XIth International Myeloma Workshop taking place
Kathy Lilleby, RN
effects. Nursing care guidelines are
in Greece this summer will feature
Fred Hutchinson Cancer Research Center
Seattle, WA
a valuable repository of information
an abstract from the NLB on the
Ginger Love, RN
that can help nurses who care for
process of how to build a nurse-
H. Lee Moffitt Cancer Center & Research Institute
myeloma patients in their practice set-
centric consensus model.
Tampa, FL
ting, whether they see many myeloma
In the future, the NLB plans to
Patricia A Mangan, MSN, AOCN, CRNP
patients weekly or only a handful of
Hospital of the University of Pennsylvania
expand its membership and activi-
myeloma patients per year.
Philadelphia, PA
ties to include nurses internation-
Emily McCullagh, RN, NPC, AOCN
During the inaugural NLB meeting in
ally, and to expand its educational
Memorial Sloan-Kettering Cancer Center
November of 2006, members worked
compliment of programs. The IMF's
New York, NY
together to develop the conceptual framework,
goal is to support the nursing community world-
Kena Miller, MSN, FNP
mission, and charter of the NLB. For purposes
wide and to disseminate important information
Roswell Park Cancer Institute
of their first undertaking, NLB members formed
in a nurse-friendly format from leading myeloma
Lewiston, NY
committees, each focusing on specific side effects
academic centers to the grassroots level. It is my
Katie Rogers, RN
related to novel therapies including deep vein
privilege to provide general leadership to the NLB
Sidney Kimmel Comprehensive Cancer Center
Johns Hopkins University
thrombosis (DVT) and thromboembolic events,
during its formation and subsequent develop-
Baltimore, MD
peripheral neuropathy, myelosuppression, and
ment of care-enhancing programs and activities.
Sandra Rome, RN, MN, AOCN
gastro-intestinal and steroid-related side effects.
Providing nurses with targeted programs and tools
Cedars-Sinai Medical Center
The committees worked for several months to com-
that enhance their knowledge and ability is an
Samuel Oschin Comprehensive Cancer Institute
plete development of the guidelines. Currently,
effective and efficient way to ensure that myeloma
Los Angeles, CA
those drafted guidelines are under review by the
patients receive optimal care. mt
Lisa Smith, MSN, NP, AOCN
NLB Steering Committee, which includes mem-
Cancer Centers of the Carolinas
bers of the IMF Scientific Advisory Board. Once the
Editor's Note: Diane Moran, RN, MA, EdM is
Greenville, SC
an experienced nurse with advanced degrees in
Steering Committee has completed their review
Joseph Tariman, CRNP, RN, APN, MN, APRN, BC, OCN
education and organizational management. She
Northwestern University
and commentary, the guidelines will go back to
is a highly accomplished healthcare executive
Seattle, WA
the entire NLB membership for their approval
with more than two decades in the pharmaceutical
Jeanne Westphal, RN
and sign-off. A Consensus Document will be
industry, developing programs within governmen-
tal, nurse and physician, and patient sectors. She
Meeker County Memorial Hospital
developed that will contain the final management
joined the IMF in April of 2006 as the Senior Vice
Litchfield, MN
guidelines, followed by their publication. The NLB
President of Strategic Planning.
800-45-CURE (87)
11
Supportive Care
how to Be a "good" patient
By Michael S. Katz
How to be a "good" myeloma patient is something I've been working on
are tables that list one or more tests with results tracked over time, one
for the past 16 years, but it may take me another 16 to get it right. Here
line or one column for each date. Many cancer centers can print out flow
are some of my thoughts on being a "good" patient:
sheets for you from their computer system just ask. Or, set up your own
Don't be too good. Mae West said, "When I'm good, I'm very good. But
tracking system on paper or a computer spreadsheet.
when I'm bad, I'm better." This applies to myeloma patients. Being "too
In closing, I'd like to note that myeloma is hard on the whole family, so
good" can get you killed. Not getting a second opinion because you're
be nice to the people who love you. Lastly, if you are lucky enough to be
afraid of offending the doctor, not asking the nurse hanging that IV what's
feeling good, it's really important for all of us to remember to be good to
in there, not speaking up about how bad you're feeling, taking "no" for
our fellow patients. mt
an answer when you need to hear "yes" (to your requests about insurance
approvals, appointments, copies of films, reports, etc.) can have serious
Keeping Tabs on Your labs
consequences. Myeloma is not a time to be nice. And you know what?
In 2004, IMFer Marcia Sawyer, one of the leaders of the North Texas
Sometimes it's fun to be a little evil!
Myeloma Support Group (NTMSG), found a tool on the American
Be good to yourself. And be sensible. This is not the time to suddenly start
Heart Association website that allows patients to organize their cho-
slogging down mega-doses of vitamins or to become a vegan. It's okay to
lesterol, blood pressure, and glucose test results. Marcia contacted
be scared, but keep a level head and know that there are reasonable things
fellow group member Dennis McClure, who was already using his
that can be done to control this disease. Try to learn some skills to better
own system for charting test results, and suggested that they develop
manage your stress. Don't abuse your body with alcohol, lack of sleep, and
a similar tracking tool for myeloma. Yelak Biru, another NTMSG mem-
other bad habits. Apply common sense to your daily life.
ber, volunteered his computer skills to collaborate on creating a system
that would be easy to use, even for people who are not experienced
Keep too busy to be sick. Symptoms and side effects can be awful, so if
with computers. The resulting NTMSG Testing History Template, which
you're really too sick to "power through," get help and rest up until you
can be easily customized, covers most of the laboratory tests done
feel better. But, don't wave the white flag too soon, because if you act sick,
for myeloma. The computerized
you'll feel sick. If you act healthy, you might fool not only others but even
worksheets are also programmed
yourself. Don't let myeloma be your life.
to generate Test History Charts,
which display data trend lines in
Don't let myeloma sneak up on you. There is an incredible range of diag-
different colors to make them easy
nostic tests available so you can see trouble coming. But, it's a very com-
to visualize for all potential users.
plicated business, as there are so many things to keep track of. Because
people can be very different from one another, it's important to find the
Because many physicians do not
best tests for each patient. It's also important to keep a close eye on organs
have the luxury to spend extended time
affected by the disease, like the bones and the kidneys. Work with your
with each patient, bringing a copy of your tracking tool is a timesaving
doctor to figure out exactly which tests you need and why, then get them
way to refresh the doctor's memory about details of the case, allow-
done and track the results. Tests answer critical questions about disease
ing more of the appointment time to be used for patient evaluation
status and help detect sneak attacks. It's always a good idea to get copies
and questions. "I was diagnosed with monoclonal gammopathy of
undetermined significance (MGUS) in 1993," said Dennis McClure,
of your test results, including laboratory (blood and urine), radiology
"In 2004, when I was told I had moved into the smoldering stage
(imaging) and pathology (biopsy) reports. You are entitled to them and
that required treatment, I was able to review the history of my test
they are not that hard to read -- just look for the summaries and look for
results, which indicated that I might still be in the MGUS category.
anything marked abnormal. Your doctor should be explaining your results
Two myeloma specialists I consulted for another opinion both agreed
to you and discussing anything you should be doing based on the results.
that I shouldn't yet be treated with anything. Monitoring my own lab
You can also bring test results to your support group, visit www.labtest-
numbers helped keep my future treatment options open, saved me
sonline.org for additional info, or call the IMF hotline at 800-452-CURE
from unnecessarily developing treatment resistance, and has allowed
(2873) for help.
me an opportunity to develop an optimum treatment strategy in a
Get organized. Set up file
non-crisis environment."
folders with the various
To download an electronic version of the Testing History Template in
reports that you will no
Excel format, as well as instructions on how to customize and use it,
doubt accumulate over
please visit the North Texas Myeloma Support Group website at www.
the years. "Flow sheets"
northtexas.myeloma.org. If you do not use (or have) a computer, ask
and graphs can be helpful
a friend or family member to print out the blank NTMSG forms, which
for you and your doctor
are also available in PDF format, and fill in your lab data manually.
to track and understand
Editor's Note: Questions and suggestions related to the NTMSG tracking
how your disease changes
tool may be submitted to Dennis McClure at mmcclure@ix.netcom.com.
over time. "Flow Sheets"
1
www.myeloma.org
Supportive Care
imf hotLine coordinators answer your Questions
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.
When I was first diagnosed with
4. The biopsy is performed by insert-
myeloma, I had a horrible experience
ing the biopsy needle into the bone
with bone marrow biopsy. It was
marrow. While patience and slow
extremely painful and I shudder at
going are the order of the day with
the thought that I will have to endure
the local anesthetic, speed and skill
this procedure again. Can you offer
are of paramount importance while
any suggestions that would make this
doing the actual biopsy. The person
procedure less of an ordeal?
performing the procedure should
Since a sample is taken directly from bone,
attempt to minimize needle manipula-
it is difficult to avoid some discomfort, but
tions in order to maximize your com-
bone marrow biopsy doesn't have to be a
fort. There is a general consensus that
horrible experience. With the information
the pressure applied in going through
and suggestions we list below, the experi-
the bone can be the most uncomfort-
ence can be, if not painless, at least much
able part of the biopsy. However, the
Hotline staff: Debbie Birns, Paul Hewitt, and Nancy Baxter
more tolerable. The best or optimal bone
first part of the sampling, which is to
marrow biopsy procedure provides the pathologist with enough intact
suck some bone marrow (liquid) out for
bone marrow material that an accurate diagnosis can be rendered confi-
part of the testing (for example, chromosome testing), can be painful.
dently, while minimizing patient anxiety and discomfort. The technique and
This pain is caused by the sudden change in pressure caused by the suck-
patience of the person administering the biopsy are paramount.
ing. Thankful y, this is extremely brief, but it is important for the doctor
or nurse to warn the patient ahead of time. The dressing placed over the
A bone marrow biopsy requires several steps. In order to make sure you
biopsy site should be left intact until the next day. One patient who has
have the best possible experience, you should discuss these steps with your
had countless bone marrow biopsies says that her best tip is to use an ice
doctor before you have the procedure.
pack on the biopsy site after the anesthetic wears off. It helps to reduce
1. Consider the use of a rapid-acting sedative as general preparation
pain and inflammation. When removing the dressing the next day, wet-
for the procedure. One simple option is to use sublingual (under the
ting the tape first wil make removal easier. If the biopsy site is unusual y
tongue) or I.V./I.M. (intravenous or intramuscular) Ativan® (lorazepam)
painful or tender in the next few days, contact your doctor.
in a smal dose to reduce anxiety. Other medications to help reduce pain
In addition to the issues of comfort discussed above, it is also important
and anxiety include Demerol®, Vistaril®, and Valium®. Some doctors
for the doctor to get a good specimen. A number of guidelines can help
give their bone marrow biopsy patients an Actiq® (oral transdermal fen-
your doctor provide the pathologist with a good specimen. Some doctors
tanyl) lol ipop. Another option is "twilight sedation" with a short-acting
have established criteria to determine if a bone marrow biopsy specimen
general anesthetic such as Propofol®.
is adequate. Dr. Bishop from the Christie Hospital in Britain suggests that
2. The doctor or technician wil position you on either your stomach or
a specimen should be at least 1.6 cm in length to be considered adequate
your side, depending on which area of the pelvic bone s/he is going to
(J Clin Pathol 1992). In addition, a specimen should not be significantly
biopsy.
disrupted during the biopsy procedure. Achieving these specimen goals
3. The doctor wil clean the skin surrounding the biopsy site and anes-
requires penetrating sufficiently into the marrow space.
thetize a site approximately 1 cm in diameter. You must let the doctor
The bone marrow biopsy procedure helps your doctor establish a diagnosis
know if you have any al ergies to the drug(s) that wil be administered.
of multiple myeloma. In addition there may be times that it is appropriate to
Successful local anesthesia entails two critical points. First, the person
repeat the procedure to help assess the adequacy of your treatments, to esti-
performing the biopsy must ensure that not only the skin, but the sur-
mate the myeloma tumor burden, and to investigate unexpected changes
face of the bone (periostium) has been anesthetized. Second, it is impor-
in the blood counts. It is also important to mention that sometimes, if the
tant to wait for the anesthetic to take ful effect. This is where patience
bone marrow has a high percentage of plasma cel s, a bone marrow aspirate
comes in. (It can require up to 20-30 minutes for the anesthetic to take
(a sample of bone marrow gathered in a syringe) rather than a ful biopsy
effect on the periostium.) An effective anesthetic cocktail recommended
specimen may be sufficient.
by anesthesiologist and myeloma patient Dr. Bill Wheeler (featured
in Myeloma Today, Winter 2006) is the combination of xylocaine and
Overal , the bone marrow biopsy procedure should not be a source of
marcaine. Patients, nurses, or physicians wishing to learn the details
marked anxiety for the patient and should provide your doctor and patholo-
of this "cocktail" can contact Dr. Wheeler at wheelerjr@sbcglobal.net.
gist with adequate specimens to help guide your treatment. As always, this
Local anesthetic can sting because it is acidic; adding sterile sodium
often requires good communication between patient and doctor. mt
bicarbonate solution to the anesthetic can neutralize the acidity and
reduce pain.
800-45-CURE (87)
1
Education & Awareness
Los angeLes imf patient & famiLy seminar
By Robert Green
On February 23 and 24, the IMF
The first presentation featured
hosted a Patient & Family Seminar
Dr. Morie Gertz (Mayo Clinic,
in Los Angeles, California.
Rochester, MN). A very effec-
The Friday afternoon ses-
tive communicator, Dr. Gertz's
sion started at 1pm with
comprehensive "Myeloma 101"
a welcome from president
overview was a good primer
Susie Novis. As the IMF's
for newly diagnosed patients,
seminar program is ever-
as well as a good refresher for
evolving, Susie noted some
those of us who have been
changes to the upcoming
dealing with myeloma
meeting, which were the
for years.
results of suggestions made by a patient
The second presenta-
focus group that the Foundation had
tion of the morning, Dr.
convened. One unexpected feature of
Durie's session on front-
the Los Angeles seminar was that IMF
line therapies, made it
photographer Jim Needham
clear that the range of
was on hand to offer souvenir
available treatment options continues to
photos to any attendees who
increase, with novel agents often being
were feeling particularly pho-
the first approach to treatment. Next,
togenic.
Kristine Kuus-Reichel, PhD, of The
Binding Site Inc., discussed the advan-
Next on Friday's agenda's was
tages of using the FREELITE assay
the "Ask-the-Expert" session
for the diagnosis and monitoring of
with Dr. Brian G.M. Durie
myeloma.
(Cedars-Sinai Comprehensive Cancer Center,
Los Angeles, CA). The session was an open forum discussion.
After a coffee break, Dr. Robert Vescio
Especially of interest to many attendees were outcomes of two large
(Cedars-Sinai Comprehensive Cancer
lenalidomide plus dexamethasone studies presented at ASH 2006.
Center) presented on the progress
Since not all seminar participants chose to attend the Friday sessions,
made in the treatment of myeloma
there was more opportunity for the patients and caregivers in attendance
bone disease. His talk covered the use of bisphosphonates, renal issues,
to ask questions of Dr. Durie.
Osteonecrosis of the Jaw (ONJ), and the development of new agents to
combat myeloma bone disease.
After a short coffee break, there was an informative session on managing
side effects, presented by oncology nurse Sandra Rome (Cedars-Sinai
Dr. Gertz's second presentation of the day addressed the changing role of
Comprehensive Cancer Center). As we waited for the next speaker to
transplant in myeloma. After a lunch break, Dr. Vescio's second presenta-
arrive, Dr. Durie took the floor again to field more questions. This time,
tion focused on treatment of relapsed disease, including an overview of
one of his topics was the use of antibiotics in myeloma.
available options and new clinical trials. The update on IMF's Bank On A
Cure® research initiative was presented by Mike Katz, and you can read
The next presenter was Dr. Evan Ross, cancer survivor and practitioner
more about this project on page 6 of this newsletter. The final general
of integrative medicine. He spoke about complementary and supportive
assembly presentation, made by Dr. Durie, focused on what's on the hori-
therapies, and explained how we get ill and how we heal from the point
zon for myeloma patients and included an overview of data from the ASH
of view of Chinese medicine. His advice on how to safely incorporate
meeting in December of 2006.
alternative modalities into cancer care and how to properly access practi-
tioner competence seemed quite valuable to those interested in pursuing
After the afternoon coffee break, each member of the faculty hosted their
integrative medicine therapies.
own Breakout Session, with seminar participants being able to attend one,
any, or all of these sessions. The breakouts offer a "cafeteria approach"
The final speaker of the afternoon was Mike Katz, a myeloma patient and
to multiple topics of interest, as well as an opportunity for more direct
member of the IMF Board of Directors. More on his presentation about
interaction with the myeloma experts on the faculty.
how to be a "good" patient can be found of page 12 of this newsletter. The
day ended with a reception and dinner hosted by the IMF.
In conclusion, for people like me who've attended several IMF Patient &
Family Seminars, some of the faculty experts have become old acquain-
Saturday's activities started with a breakfast buffet. Once Susie Novis con-
tances and the information presented may no longer be news, but these
vened the meeting, those participants who were new to the IMF seminars
seminars always have something for all members of the myeloma commu-
were instructed in the use of the Audience Response System, which allows
nity, from "newbies" to the long-term patients who are more technically
for an instant interactive exchange of information between audience
inclined. mt
and faculty.
14
www.myeloma.org
Education & Awareness
IMF MYElOMA MObIlE
The Tuohy Family Will Travel Across the United States
The Tuohy Family of Prospect, CT, plans to
information they need," said Robin, who is also
travel across the United States this summer in
Regional Director of Support Groups for the IMF.
the MYELOMA MOBILE. This national grassroots
The MYELOMA MOBILE will be stocked with over
outreach is the brainchild of Michael Tuohy, who
50 publications covering a wide range of topics in
was diagnosed with myeloma when he was just 36
multiple languages.
years old. Michael will be traveling with his wife,
The Tuohy Family trip will begin in late June when
Robin, and their two children, 14-year-old Ally and
Ally and Mikey are out of school. "When I first
9-year-old Mikey.
found out that my Dad had myeloma, I was in
Plans for the MYELOMA MOBILE began in 2006
second grade and did not understand what was
when the Tuohys were vacationing in a region
happening. I now have the opportunity to help
that had no myeloma support resources. "When I
others not feel so alone and to realize that there
was diagnosed I never thought I'd live to celebrate my 40th
is lots of hope," said Ally, "I can show kids ways to cope
birthday, but here I am, seven years past diagnosis, in full
with the stress and sadness, and to appreciate what is
remission and feeling good," said Michael. "I thought of the
most important in life. We've always dealt with my Dad's
MYELOMA MOBILE as a way to reach out to patients and
myeloma as a family, and we have gained strength from
their families who never heard of myeloma before their
each other. I hope that together we will be able to help
diagnosis, and to help those who do not have good medical
other families in the same situation." "I know I can help
resources to work their way through the many treatment
other kids whose family members have myeloma," added
options available today. Facing myeloma can be daunting if
Mikey, who was only two years old when his father was diag-
you're doing it alone, and we want to be there to help."
nosed. "It helps to talk when you are scared, and learning about myeloma
The MYELOMA MOBILE is a unique event, providing an opportunity for
makes it less scary, too. Maybe one of us kids will grow up to be a doctor
patients, caregivers, and children of families touched by myeloma to share
and find the cure!"
their experiences with one another. The Tuohy Family will also focus on
Driving the MYELOMA MOBILE, the Tuohy Family will continue to criss-
raising myeloma awareness and on empowerment through education
cross the country through mid-August. The MYELOMA MOBILE will be
by disseminating the most up-to-date information about the disease, the
equipped with a GPS tracking system so you can follow its route on the
advancements in myeloma treatment and management, and the benefits
IMF website www.myeloma.org. If you would like to visit the MYELOMA
of appropriate therapy. "We want to visit communities that have local sup-
MOBILE, or for more information, please contact the IMF at myelomamo-
port groups to add our voice to theirs, and to visit communities that may
bile@myeloma.org or 800-452-CURE (2873). mt
have limited support and medical resources to bring them literature and
spotLight on advocacy
Health Care Becomes Key Issue in 110th Congress
By Christine Murphy, MA
Health care will receive significant time and attention in the 110th To ensure that myeloma patients have access
Congress as leaders in both the House and Senate have prioritized
to the comprehensive, quality care they
these issues. Increases in funding are a high priority for the National
need and deserve, IMF advocates ongoing
Institutes of Health (NIH) and the Centers for Disease Control and
and significant federal funding for cancer
Prevention (CDC). The Congress will also address thorny issues within
research and application. We are happy to
the Medicare system such as reimbursement for physicians (Part B) and
report that funding for important myeloma
reducing the "donut hole" in the Medicare prescription drug benefit
cancer programs will become a higher prior-
(Part D).
ity than in years past. The President's budget
for fiscal year (FY ) 2008 included cuts in
Other key health care issues that will be addressed in the 110th
cancer programs, but Congressional leaders
Congress include:
will largely ignore the President's budget
· Reauthorizing the Prescription Drug User Fee Act at the Food and
and have pledged that funding for myeloma cancer programs at the
Drug Administration (FDA);
NIH, National Cancer Institute (NCI), and the CDC will be increased in
· Banning employers and health plans from discrimination based
FY 2008. While the ultimate outcome of these issues remains unclear,
on genetic information;
IMF stands ready to work with policymakers to advance policies and
programs that work toward prevention and a cure for myeloma.
· Expanding federal funding of stem cell research; and
For updates on these issues and IMF's advocacy efforts, please visit
· Addressing the growing number of uninsured Americans.
www.myeloma.org. mt
800-45-CURE (87)
15
International Affiliates
updates from europe
IMF Europe
services to benefit more patients. One of Gregor's projects is to organize
The IMF has been actively involved with the myeloma community Regional Community Workshops (RCWs) to broaden the reach of the IMF's
worldwide since its founding providing services to patients and
cornerstone educational programs, such as the Patient & Family Seminars
families, working with clinicians and scientists on projects promoting
and clinical conferences. RCWs are structured as two to three-hour events
access to care, new drugs, clinical trials, fostering international collabora-
designed to bring together world-recognized myeloma experts with locally
tion, and funding cutting-edge research.
based myeloma doctors to provide information and education to local
patients and families.
Integral to its mission to serve the international myeloma community,
IMF offices have opened in the UK, Japan, and Latin America. These
As part of its ongoing efforts to promote a global exchange of information,
offices function under the leadership of directors native to those regions
IMF Europe has a goal of increasing expert exchanges on both sides of
and through the efforts of dedicated volunteers. Funding support of
the Atlantic. In 2006, Drs. Robert Kyle and David Vesole of the US partici-
these offices is made possible by
pated in three RCWs in Germany (Würzburg, Nürnberg, and Berlin) and
Upcoming Myeloma donations and grants collected Dr. Hermann Einsele of Germany visited US myeloma support groups in
Regional Community within the nations. In early 2006,
Miami and West Palm Beach, Florida.
Workshops
the IMF made a commitment
This year, IMF Europe plans to open a new office in Belgium and to expand
to increase its activities on the
May 16 -- Munich, Germany
its efforts in Germany, France, Italy, and Spain. Projects and programs will
Featuring Dr. Morie Gertz
European continent by open-
include continued development of seminars and RCWs, expanded range
(Mayo Clinic, Rochester, MN)
ing its IMF Europe affiliate, with
of translated patient education materials, and creation of new support
Gregor Brozeit as Director.
groups. Additionally, IMF Europe will work with the European Myeloma
May 19 -- Würzburg, Germany
Featuring Dr. Gertz and
Gregor is working with the
Platform (see below) to strengthen patient voices in European public
Dr. Hermann Einsele
European myeloma communi-
policy issues. For more information, please contact Gregor Brozeit at greg.
(University Clinic of Würzburg)
ties to help provide additional
brozeit@sbcglobal.net.
European Myeloma Platform
· organization of symposia, workshops, and other meetings; and
"Patients for Patients" is the motto of the European Myeloma Platform · web-based information dissemination.
(EMP), an umbrella organization of support groups. EMP is the
EMP was founded in February of 2006 as a result of the initiative of myelo-
only pan-European myeloma patient organization run by patients and
ma patients from Austria, Belgium, Denmark, France, the Netherlands,
family members. Membership is free, and all myeloma patient groups in
and Switzerland. Later, EMP expanded to include myeloma patient groups
Europe are encouraged to join to make the voices of myeloma patients
from Germany and Scotland. EMP is a member of the European Cancer
heard in the European health policy debate. EMP focuses on questions
Patient Coalition (ECPC) and the European Organization for Rare Diseases
concerning:
(EURORDIS). EMP works in cooperation with the IMF, which provided
· accessibility to treatment and medication;
EMP with start-up support. Politically and financially independent, EMP is
· access to information on new and current trials;
registered as a non-profit organization under Belgian law. For more infor-
· stimulation and support of research into new methods of
mation, please visit www.european-myeloma-platform.org. mt
treatment and medication; and
· exchange of information between European myeloma patient
European Union Membership
associations.
· Austria
· Finland
· Latvia
· Romania
EMP is recognized by the European Medicines Agency (EMEA, the
· Belgium
· France
· Lithuania
· Slovakia
European counterpart to the FDA) as a representative of European myelo-
· Bulgaria
· Germany
· Luxembourg
· Slovenia
ma patients. EMP has represented the interests of
· Cyprus
· Greece
· Malta
· Spain
myeloma patients to press for approval of Revlimid®
· Czech Republic · Hungary
· Netherlands
· Sweden
· Denmark
· Ireland
· Poland
· United
in the European Union. In the future, EMP will partici-
· Estonia
· Italy
· Portugal
Kingdom
pate in the evaluation of European Public Assessment
Report (EPAR) to represent patient perspectives for future policy initia-
tives. EMP is the only blood and bone marrow cancer group involved in
this activity, initiated by EMEA to help patients properly use drugs.
EMP's main activities will concentrate on:
· collaboration with relevant European and international
organizations;
· representation in relevant European political and health care
organizations;
1
www.myeloma.org
Support Groups
ventura county
space coast
muLtipLe myeLoma support group
muLtipLe myeLoma support group
Gary Diehl was diagnosed with myeloma in August of 2000. After an
intensive period of treatment, his sense of wellbeing returned but he
In 2004, Rosemary Herring of Titusville, Florida, was working as a nurse
at a teaching hospital for the University of Florida College of Medicine.
One day, as she bent to pick up her dropped car keys, she felt a sharp
felt alone with his disease. He had never met another myeloma patient.
pain. The pain persisted for weeks. Finally, Rosemary spoke with one of
Then Gary's oncologist told him about an IMF Patient & Family Seminar
the doctors in her clinic. An x-ray revealed fluid in the lungs, which was
being held in Los Angeles in January of 2003. That's how Gary became a
drained, but six weeks later her condition was not improved. More tests
part of the IMF family, and that's when the seeds for a new support group
followed until a diagnosis was established. At 52 years old, Rosemary had
were planted. In July of 2004 Gary and his wife, Roberta, attended an IMF
myeloma in 90% of her bone marrow.
seminar in San Jose, California. During an open forum discussion, Gary
announced his desire to start a myeloma support group in his area. Glen
and Marion Seavers, a couple who also live in Ventura County, decided to
join the effort.
(left to right) Jake Schaller, Rosemary & Wayne Herring,
Wendy & Roger Widman, Ray & Helma Stern, Josephine & Philip Basilice
Rosemary's compromised immune system caused her to retire from a
profession she loved. In September of 2004, she had her first autologous
stem cell transplant and, in January of 2005, a second transplant fol-
lowed. Rosemary's next challenge was dealing with bilateral lung nodules
Back row: Lisa Ratcliff, Maria & Fred Weiner, Tom Gilbo, Andy & Melba
brought on by an infection resulting from the second transplant. As she
Forman, George Hurley, Arlene Kirman, Bob Diem, Tom Brondos,
recovered, Rosemary felt the need to talk to others, and she reached out
Zelda Finestone, Kathy Candish, Anthony & Mary Vara, Tess Daduya.
to the IMF. There was no myeloma support group near Rosemary, so Andy
Middle row: Joan & Ivan Curtis, Rich Bintliff, Roberta Diehl, Laura Bintliff,
Lebkuecher, IMF Regional Director of Support Groups for the Southeast,
Diane Schaefer, Tony Gaitan, Columbia Stenberg.
helped her to establish a new group.
Bottom row: Mary Jane Helton, Ginny Weisman, Gary Diehl, Jan Diem.
Titusville is located on the banks of the Indian River, across from the
impressive Kennedy Space Center. Hence the name "Space Coast Multiple
With the help of the IMF, and word of mouth, the Diehls and the Seavers
Myeloma Support Group." The inaugural meeting took place in August of
sought out other patients and caregivers in their area. In February of
2006. "A small group of myeloma patients and caregivers attended our first
2005 the group held its first meeting over breakfast in a local restaurant,
meeting, and Andy Lebkuecher came as well. Over the next few meetings,
with nine people in attendance. Since then, the group has found a home
our group's ranks doubled," said Rosemary, whose healthcare background
at a local chapter of The Wellness Community where approximately 20
has helped her share educational information with group members. "The
regular participants meet in a warm and welcoming atmosphere, sharing
IMF patient pamphlets have been very helpful and the first time I received
a catered lunch. As facilitator, Gary makes sure that each member has
a copy of Myeloma Today, I can't describe how thankful I was to be read-
a chance to share his or her experiences or questions. In addition, the
ing such an informative publication," added Rosemary. "With so many
group frequently circulates educational materials and occasionally hosts
treatments available these days, it's essential for the patient community
invited speakers.
to be educated about our disease and to understand the options at hand.
Knowledge is power!"
"I started the support group because I needed a support group, and it has
Now in complete remission, Rosemary is able to reflect on her journey
been a tremendous help to me," says Gary Diehl, "After many years as a
over the past two and a half years. "My myeloma experience has been
high school teacher focusing on the needs of my students, I found that I
something I wouldn't wish on anyone, but I have received so much sup-
was not very good at getting. Now, as I think about the support group and
port from so many people that I wanted to give something back. Starting
how I can best be of service to its members, I am better able to cope with
a myeloma support group was one way to do that. The people who come
my own disease. Our support group is a forum, an audience, a morale
to our meetings are so wonderful and, no matter how much I try to give
booster, a knowledgeable and sympathetic ear, a source of information,
to the group, I always find that I get more in return. This group has been
and above all, a companion." mt
my best therapy! mt"
Editor's Note: This group meets on the first Saturday of each month at
Editor's Note: The Space Coast Multiple Myeloma Support Group meets
11:30AM at The Wellness Community in Westlake Village, California. For
on the second Thursday of each month at 5:30PM in Titusville. For more
more information, please contact Gary Diehl at grdiehl@sbcglobal.net or
information, please contact Rosemary Herring at spacecoastmm@cfl.rr.com
805-647-2852.
or 321-271-4906.
800-45-CURE (87)
17
Patient & Caregiver Experience
twenty-siX years and counting...
By Gary Benanav
In 1981, when I saw my local doctor in Connecticut
basis. After a month living in a motel in Rochester,
for an annual physical, tests revealed that my hemo-
MN, I was back home for an additional two weeks
globin level was below normal. I was referred to a
of recovery. In another four weeks, I was back to
hematologist, who ran a series of tests, culminating in
feeling like myself.
the bone marrow biopsy that established the diagno-
I was in full remission, receiving no treatment aside
sis of multiple myeloma. It looked like my life would
from taking part in Mayo's dendritic cell vaccine
be of short duration, with an outside life expectancy
clinical trial, until early 2003. When the disease
of two to two and a half years. A second opinion from
relapsed, I decided to transfer my care to Dr. Sundar
a doctor at the University of Pennsylvania confirmed
Jagannath at St. Vincent's Comprehensive Cancer
both the diagnosis and the prognosis.
Center in New York City, where I had moved by
I was 35 years old, a married father of three young
that time. Twenty-one years after my diagnosis, the
children aged 5 to 11 years old. My wife and I decided
diverse range of treatment options included several
not to share my cancer diagnosis with anyone, and
impressive novel agents. VELCADE®, which had just
to try and keep our lives as normal as possible. My
been approved for myeloma, seemed like my best
personal goal was to live long enough to see my son
bet. I was still traveling internationally for my work,
bar mitzvahed in two years. It was time to decide how
Gary Benanav
so I would carry the drug with me and have it inject-
to best maximize my life expectancy. Twenty-six years
ed by local physicians. I had Velcade administered in
ago, the list of treatments for myeloma was very short. Given the options,
places as far away as India, Korea, Hong Kong, Indonesia, and Bali, usually
my doctor said that he would prefer that I forgo treatment. To do nothing
by physicians or nurses who had never heard of the drug and whom I had
seemed like a very daring decision, but we agreed simply to observe the
to instruct on preparation and administration. Once the round of treat-
disease without treating it. We called this approach "benign neglect with
ment was completed, another stem cell harvest was done as a precaution.
a watchful eye."
A little less than two years later, I relapsed once again and went through
I saw the doctor regularly. My myeloma was progressing and my hemoglo-
a second round of Velcade, this time in combination with DOXIL®. Other
bin counts continued to decline, but I remained otherwise asymptomatic.
than some unpleasant neuropathy in my feet, I tolerated the regimen well
In 1985, two years past my original life expectancy, I decided to consult
and was able to achieve another remission.
Dr. Robert Kyle at the Mayo Clinic. His philosophy on myeloma seemed
In the twenty-six years since my myeloma diagnosis, I've set many mile-
very close to my own. Unlike other experts working in the field at the
stones for myself, and I've passed them all. Not only have I seen my oldest
time, he did not take an aggressive approach to every case. I continued
child bar mitzvahed, I've seen my daughter married and my three grand-
to see Dr. Kyle every six to eight months. In the meantime, I was work-
children born. A year ago, I retired after a long career. I know that I have
ing crazy hours and traveling extensively for my job as an executive in
been very fortunate. For me, it doesn't pay to ask, "Why?" I am not some-
the insurance industry, running international business units for a major
one who believes in mind over matter, but holding to a positive attitude
American insurer. By 1993, my hemoglobin numbers were so low that I
has helped me along the way. Living with the "sword of Damocles" hang-
required regular blood transfusions, but I remained fully active.
ing over my head has been a curse that all myeloma patients understand.
In 1995, Dr. Kyle finally said, "If you don't do something about your
At the same time, it has made me focus on what's really important in life.
myeloma now, it may be too late." He recommended chemotherapy fol-
I still wake up every morning and think how lucky I am to have the gift of
lowed by a stem cell collection but, because my disease had progressed
another day of life. I will continue to appreciate those gifts no matter how
so slowly, he opted not to perform a transplant at that time. Having to
much or how little time is left -- but I'm determined to see many more
go through chemotherapy, which was administered from a fanny pack
days with the gift of life. mt
through a pump, finally required the disclosure of my diagnosis. But I
continued to work and didn't slow down until I had to fly to the Mayo
Imagine Moving Forward is the
Clinic for the stem cell harvest. I wasn't thrilled about losing my hair but,
theme of the IMF's myeloma brace-
all in all, the experience wasn't too bad.
let. Wear one in honor, celebration,
The remission lasted until 1998. The disease returned aggressively enough
or in memory of a loved one. When
that it was time for a transplant, which was done at Mayo Clinic by Drs.
people ask you about it, you'll have
Morie Gertz and Martha Lacy. The experience of the transplant in com-
a perfect opportunity to spread
bination with chemotherapy and radiation (which was still part of the
the word about multiple myeloma.
transplant regimen in the late 1990s) was horrible! I was on morphine
These bracelets are only $1 each
in sets of 10. Youth bracelets are
for the pain, which was unspeakable. Generally, I am a very optimistic
now available, so everybody in your family who has been touched
person but I found myself wondering if I had made the right decision. A
by myeloma can wear one! Order bracelets online at our website
week later it was discovered that a mistake by the pharmacy halved the
www.myeloma.org, or contact Suzanne Battaglia at SBattaglia@
prescribed strength of a morphine renewal, rather than doubling it. Still, I
myeloma.org or 800-452-CURE (2873).
was one of the first patients at Mayo to do the transplant on an outpatient
18
www.myeloma.org
Investing in the Future
myeLoma today in conversation with waLter BenJamin reinhoLd
"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 a little about your professional
On A Cure® and other endeavors. The IMF has had
background.
a significant impact on the entire world community
I worked for a company that designs and manufac-
of myeloma patients, caregivers, and healthcare pro-
tures machinery, tools, and equipment used in oil
fessionals. I don't know of another organization that
and gas drilling and production.
does a better job for a sickness to which it's dedi-
cated. I believe the overall accomplishments of the
Was your occupation in any way connected to
IMF are among the very best in our medical society.
your myeloma diagnosis?
And, speaking from a selfish standpoint, the IMF is
When I was first diagnosed, that question was
a very good organization for me. I support the IMF
raised more than once. Although I worked in the
because it's been very helpful to a patient like me. It
oil and gas industry, my company simply produced
seems to me that my life, and the lives of many other
the products used in the industry, so I had no job-
patients, has been extended by the advances that
related exposure to carcinogens.
have come about in part due to the IMF. It is now
possible, by controlling myeloma more effectively,
Under what circumstances were you diagnosed?
to prolong life and to improve its quality. And the
After traveling on a long non-stop flight, I developed
IMF is continuing to move in very interesting direc-
a sharp pain in my ankle. My doctor suspected
tions, and I am very confident that we will develop
that I might have developed a blood clot and, sure
Walter Benjamin Reinhold
a cure for this disease.
enough, a blood clot was found. I spent the next
three weeks in a hospital. Unexpectedly, blood tests
In conclusion, I would like to make an observation.
also showed a protein spike. I was diagnosed with monoclonal gammopa-
In a baseball game, every time a batter goes to the plate, he would like
thy of undetermined significance (MGUS) and told that I may at some
to hit a home run. Unfortunately, nobody hits a home run every time. So
point develop either lymphoma or multiple myeloma or, because of my
it's important to remember that one of the most important statistics in
age (I was 70 at the time), the MGUS might just disappear. This was June
baseball is "runs batted in." If the batter manages to get a hit, he can reach
of 1994. In June of 1998, my diagnosis was changed to myeloma.
first or second base, and this is great. The game keeps going and winning
remains a possibility. A good team tries to get as many hits as possible
What is the quality of your life with myeloma?
and, at the end of the game, this can be more important than one or two
The quality of my life has been impacted because of the myeloma-relat-
home runs. With the help of my doctor, I am now on second base. We
ed peripheral neuropathy in my feet and lower legs, which continues to
are engaged in a long, tough ball game. We are playing for keeps and the
get worse. My balance is now so poor that I must use a walker to move
stakes are high. In the meantime, I am alive and I am optimistic. Getting
around. But it's now been almost 9 years since my myeloma diagnosis.
to home plate and winning is now a real possibility. mt
In December of 2006, I turned 82. I have developed the attitude that I
really want to live. The world today is an extremely exciting and interesting
place, and all of us can be involved in watching the great drama of life
Planned Giving
unfold. I am enjoying life now in a way that I hadn't anticipated years ago.
I can no longer go fishing for trout and salmon, and that's too bad, so I've
There are many ways to support the IMF. It is important that you find
shifted my interests to the things that I am able to do. I love to read, so I read
the approach that best meets your needs and fulfills your wishes. In
order to help start the thought process for your gift planning, we
a great deal. The occasional television program is always welcome. I enjoy
suggest the following forms of giving:
a good conversation. We live on the North Shore of Oahu in the Hawaiian
Islands and, every afternoon, I take my walker out on the bike path for an
· Bequests in your Will or Trust
· Annuity Trusts
hour of cardiovascular exercise. I am just not inclined to give up.
· Gifts of Securities (Stocks)
· Unitrusts
· Gifts of Real Estate
· Term-of-year Trusts
Why have you chosen to support the IMF?
· Charitable Lead or Remainder Trusts · Gifts of Life Insurance
In January of 2003, I attended the IMF Patient & Family Seminar in Los
Estate and gift planning requires thoughtful consideration and dis-
Angeles. I found the IMF to be a wonderful organization with a very posi-
cussion. To learn more about any of the suggestions listed above,
tive overall approach. The IMF does a great deal of good for the myeloma
or other forms of giving that might inspire you, please contact
community. The IMF doesn't just give comfort to people. Susie Novis and
Susie Novis at 800-452-CURE (2873) or snovis@myeloma.org. We
Dr. Brian Durie travel the world disseminating information and educa-
also invite you to visit our website at www.myeloma.org for a more
tion about multiple myeloma and its treatments. The IMF pursues and
detailed explanation of these giving plans.
promotes means and efforts to cure myeloma through programs like Bank
800-45-CURE (87)
1
Member Events
imfers raise funds to Benefit myeLoma community
By Suzanne Battaglia
Gina Terry Runs Again!
Members Help Fund Myeloma Research
On December 9, 2006, Gina Terry embarked
The recipients of the 2007 IMF Research Grants were announced at
on her second half-marathon. She ran to honor
the 48th Annual Meeting of the American Society of Hematology in
her mother and to support the IMF's Bank On
December of 2006. The Senior Research Grant was awarded to Dr.
A Cure® research initiative. "As the race date
William Matsui (Sidney Kimmel Comprehensive Cancer Center, Johns
approached, every time I didn't feel like train-
Hopkins University, Baltimore, MD) for his project "Hedgehog Signaling
ing, I would just think of my mother and other
in Myeloma Cancer Stem Cells." This grant was presented in the name
myeloma patients who don't have a choice about
of Janet Carol Johnson, and was funded by the "JC" Golf Invitational
facing their daily challenges, and that always
Tournament, an annual event organized by Janet's family and friends.
Gina at the finish line
kept me going," said Gina, who trained for three
The Junior Grant was awarded to Dr. Roberto Bellucci (Dana-Farber
months to get to the starting line. "And during the race itself, in my pocket
Cancer Institute, Boston, MA) for his project "Genetic screening for
I carried a list of names of all the supporters of our cause to remind me
myeloma cel susceptibility to NK cel -mediated lysis using shRNA librar-
why I was running. The entire experience was fantastic, despite the chilly
ies." This grant was funded by the late Donald R. Woodward.
25°F temperature!
Many
people
Sheridan-Shedenhelm Wedding
approached me
On February 3, Kendra Shedenhelm and Shawn Sheridan were married in
with questions
Tampa, Florida. Kendra's mother has multiple myeloma and, in less than one
about myeloma,
year, has undergone two stem cel transplants. Kendra has been her care-
Bank On A Cure,
giver throughout, so she decided to make her wedding to Shawn even more
and the IMF, and
meaningful. In lieu of gifts, the couple decided to honor Kendra's mother by
everyone was so
helping to raise funds for the IMF while raising awareness of myeloma.
friendly. I received
levine Mitzvah Day
a lot of support
On February 11, Harvey Levine
even my college
participated in a Mitzvah Day
roommate came
project at Temple Beth Emet in
Gina (left) with Samuel Boyd,
to support the
Cooper City, FL. A Mitzvah Day
sons Chandler & Cameron, husband Chris Terry,
event and made a
is an event where the community
and Sullivan, Tara, Savanna, and Jeff Boyd.
donation, and we
helps charities and individuals
have not seen one another in 20 years!" In fact, Gina's fundraising was so
in need. Harvey, who was diag-
successful that she doubled her original goal. "When I made it across the
nosed with myeloma in 2002,
Harvey Levine
finish line and received my medal, I was so tearful and overwhelmed by
was joined in his fundraising project by his wife Joan and their grandchil-
the experience of the race and people's response to my cause that I felt
dren, 7-year-old Joshua and 4-year-old Eva. "A Mitzvah is a commandment,
like I might as well have been at the Olympics!"
and one of the commandments is to perform good deeds and to help
Crowell Yard Sale
others," said Harvey, "We worked for our favorite cause, the IMF's research
program. I look forward to doing many more functions to benefit the IMF."
On January 27, Tami & Kevin
Crowell held a successful yard sale
Join Us
to raise funds for both the IMF and
We are grateful to all IMFers who contribute their time, imagination, and
Tami's mother's medical expenses.
hard work to benefit the myeloma community. The IMF is committed to
The event took place in the park-
working with you to continue to raise awareness and funding for myeloma
ing lot of Just for Kids Learning
education and research. Please join us in working together toward our
Center in Jacksonville, FL. Several
common goal... a CURE. Our FUNdraising program provides you with the
family members helped organize the
tools, assistance, and
logistics of the event, and collected
expertise to make
Upcoming Member Events
Tami & Kevin Crowell
donated items for sale. "It was a fan-
your event a success. May 6, 2007 Afternoon Tea
tastic day," said Tami, "We had three 20'-long trailers full of stuff that our
No idea is too large (Special Guest Speaker Susie Novis)
friends and family donated people were buying things even before the
or too small. Please Four Seasons Hotel Washington, DC
Contact: Carol Klein, carol60klein@comcast.net
trailers were unloaded! We also held a bake sale and a raffle, and served
contact me, Suzanne May 19, 2007 7th Annual "JC" Golf Tournament
sandwiches, chips, and drinks." To help raise even more money, Tami's
Battaglia, at sbatta-
Wapicada Golf Course Saint Cloud, MN
brother-in-law, Ray Carnicelli, who played Lacrosse in college, conducted
glia@myeloma.org Contact: David Johnson, 952-546-6000
a sports clinic for kids. In addition, IMFer David Mann was on hand to
or 800-452-CURE May 27, 2007 Myeloma Run/Walk
offer support, help distribute IMF brochures, and share his myeloma
(2873). mt
Winona, MN
experience with shoppers and visitors.
Contact: Erin Yess, erinyess_7@hotmail.com
0
www.myeloma.org
Special Announcement
meet the imf's eXecutive director
David Smith Promoted to Newly Created Position
How did you come to work for the IMF?
who does not attend a support group to do so. If
I was working in the medical affairs department of
there is not a group in the area, the IMF is here to
Salick Oncology when I first met Susie Novis, and the
help you start one.
rest was kismet... In 2004, I was recruited to assist
Another of my responsibilities was to expand the
the IMF with the administration of the Centers for
IMF's extensive publications. With help from our
Disease Control and Prevention (CDC) grant and the
staff, the Scientific Advisors, and especially Dr.
internal and external operations of the foundation.
Durie, we have more than doubled the publica-
I was promoted to the newly created position of
tions we offer to over 60. The IMF has worked
Executive Director effective January 1, 2007.
very hard to make the translated versions of our
What is your educational background?
materials universally relevant.
My concentrations were marketing, accounting,
When I was named Vice President (Operations) in
Iberian studies, and languages. My MBA degree is
January of 2005, I took on the additional respon-
from Thunderbird, the American Graduate School
sibilities of our human resources needs. As the
of International Management. My BA is from the
IMF grew, our staff expanded to more than 20
University of Michigan. During my undergraduate
employees. We are very fortunate to have loyal
studies, I attended the Universidad Complutense de
staff members that care about our mission and our
Madrid. I am fluent in several languages.
David Smith
members.
IMF Executive Director
What is your connection with Spain?
Another important responsibility I have taken on
I fell in love with Spain during my senior year of
is the operations aspect of the Bank On A Cure®
high school when I went on a three-week trip to Castile and Andalusia.
program. By the time that we ended Phase II of the sample kit distribution
All I ever thought about was returning, so, for my junior year of college,
program last year, we had received over 1,500 samples. We are currently
I attended the Universidad Complutense de Madrid's foreign student
involved with the National Cancer Institute in developing a questionnaire
curriculum. I lived with a local family, and traveled through Spain and
that will be distributed to those individuals and will lead us into further
Portugal. I've tried to return every year since then, and have been very
epidemiological results. Then we will embark on the next phase of the
lucky to have met that goal more times than not!
program, and we are very excited about that!
What about your work experience?
What are your responsibilities in the new position?
Mine is eclectic. I've taught English as a second language; was the direc-
As Executive Director, my aim is to build upon the many successes of
tor of a Luso-Brazilian research center; managed a store; and worked as a
the foundation in the core areas of our mission -- education, research,
computer technician for one of the Big Three, in the same company from
support, and advocacy -- and to assist the IMF's Board of Directors in the
which my father had retired. Then I spent more than seven years in Mexico
fulfillment of our strategic planning goals. And I will continue to take a
City, where I started what became a hugely successful software company.
"hands-on" approach to areas that fall within my immediate expertise.
When I returned to the States, I gave up the "suit and tie" and studied
What do you see for the future of the IMF?
Oriental medicine. My mother was a nurse, so I suppose that it was destiny
I would like to see the day when myeloma and other incurable diseases
to somehow end up caring for people. I graduated and became a full-time
become manageable and eventually disappear. Until then, I see how other
reflexologist. The majority of my patients suffered from peripheral neu-
non-profits can learn from the model that the IMF has created: empower-
ropathy, a horrible problem that most myeloma patients know too well. I
ing the patient. At the IMF, we believe that education is the key to disease
was hired by Salick to begin reflexology trials and to work in administra-
management, and the IMF continues to lead the way with our programs,
tion. That connection eventually brought me to the IMF, where I can com-
publications, and educational forums. I look forward to the day when
bine my compassion for people with my skills in business management. I
myeloma diagnosis is early and accurate; when each patient and family
am incredibly grateful to Susie Novis and Brian Durie for allowing me the
member is given the tools to manage the disease; and when all patients
opportunity to serve the IMF and its members.
and caregivers affected by this disease can really know that they are not
Please tell us about your experiences at the IMF.
alone. mt
I was hired as an Associate Director and immediately started work admin-
Editor's Note: If you would like to contact David Smith, he can be reached
istering the grant from the CDC. Part of the implementation of the CDC
at dsmith@myeloma.org or 800-452-CURE (2873).
grant has taken me to cancer centers and support groups around the
country. I believe that my own personal experiences with patients and loss
prepared me for the emotional impact of myeloma. I encourage everyone
800-45-CURE (87)
1
IMF Staff Updates
IMF's Kelly Cox has been promoted to Director
Heather Cooper Ortner, who recently joined
of Support Groups Outreach. Kelly works closely
the IMF as vice president of development, comes
with the more than 90 support groups around
to the Foundation from the Brandeis-Bardin
the country, bringing the IMF's mission directly
Institute where, as director of development, she
to those affected by myeloma. Kelly brings enthu-
created a major gifts program and increased pro-
siasm and energy to myeloma awareness and
ceeds from an annual event by more than 60%.
outreach wherever he travels for personal visits,
Previously, Heather was director of the Western
as well as via phone calls and e-mails. Under his
Area Development Center of Hadassah, where
direction, the Southwest Symposium, an outreach
she directed major gift activities in 16 states. She
project in Arizona, has grown to become a key source of information
has also worked at the American Israel Public Affairs Committee and the
about myeloma in the region, as well as a unique forum for healthcare
Venice Family Clinic, the largest free clinic in the nation. Heather's 15
professionals, patients, and others.
years of professional experience, and the innovation she has shown creat-
ing programs and opportunities in her previous positions, have prepared
Jennifer Scarne, the IMF's new comptrol er,
her to manage the relationship the IMF has with our generous and dedi-
manages the daily financial operations of the
cated supporters.
Foundation. She is a Certified Public Accountant
with over ten years of accounting and finance
Arin Assero recently joined the IMF as the special
experience. Previously, Jennifer served as the
outreach program coordinator. After years as a
controller of Morgan Creek Productions and
dedicated caregiver to a family member with can-
as manager in Ernst and Young's internal audit
cer, she decided to change her career path to the
entertainment practice, representing such enter-
nonprofit sector. Previously, Arin enjoyed a long
tainment clients as The Walt Disney Company,
and successful career in restaurant and catering
AOL Time Warner, and USA Networks. Jennifer has also served as line
management, establishing a reputation as a reli-
producer on an independent film, and volunteers her time serving as the
able provider of solutions in the challenging and
vice president of finance on the board of The Good Shepherd Center for
competitive Los Angeles food service industry.
Homeless Women and Children.
2007 IMF Calendar of Events
May 26 SouthwestOncologyGroup(SWOG)semi-annualmeetingChicago,IL
Sept 14 IMFPatient&FamilySeminarParis,FRANCE
16 IMFRegionalCommunityWorkshopMunich,GERMANY
21 IMFPatient&FamilySeminarRome,ITALY
17 IMFRegionalCommunityWorkshopBergish-Gladback,GERMANY
26 IMFClinicalConferenceSt.Petersburg,RUSSIA
1718 AMENIsraeliAssociationofMyelomaPatients
Oct 37 SouthwestOncologyGroup(SWOG)semi-annualmeetingHuntingtonBeach,CA
anniversarycelebrationTelAviv,ISRAEL
1820 Lymphoma&MyelomaConferenceNewYork,NY
19 IMFRegionalCommunityWorkshopWürzburgGERMANY
20 IMFClinicalConferenceBeijing,CHINA
June 15 AmericanSocietyofClinicalOncology(ASCO)annualmeetingChicago,IL
2127 MultipleMyelomaAwarenessWeek
7
KyleLifetimeAchievementAwardDinnerVienna,AUSTRIA
22 IMFPatient&FamilySeminarBarcelona,SPAIN
710 EuropeanHematologyAssociation(EHA)annualmeetingVienna,AUSTRIA
Nov 23 IMFPatient&FamilySeminarTampa,FL
810 EasternCooperativeOncologyGroup(ECOG)semi-annualmeetingWashington,DC
911 EasternCooperativeOncologyGroup(ECOG)semi-annualmeeting
2530 XIthInt'lMyelomaWorkshopKosGREECE
Ft.Lauderdale,FL
July 2728 IMFPatient&FamilySeminarTeaneck,NJ
17 IMFRegionalCommunityWorkshopBergish-Gladback,GERMANY
Aug 34 IMF(LatinAmerica)Patient&FamilySeminarSaoPaulo,BRAZIL
19 IMFRegionalCommunityWorkshopBerlin,GERMANY
1719 NurseLeadershipBoard(NLB)RetreatSantaMonica,CA
Dec 811 AmericanSocietyofHematology(ASH)annualmeetingAtlanta,GA
Other events/meetings will be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or call 800-452-CURE (2873).
IMFLatin America, IMFJapan and IMFIsrael events are not included above.
You are invited to attend a very special evening honoring Prof. Dr. Heinz Ludwig
with the prestigious Fifth Annual IMF Robert A. Kyle Lifetime Achievement Award
This event is sponsored by
Celgene Corporation
Janssen Pharmaceuticals NPV
Pharmion LTD
and
The Binding Site
Heinz Ludwig, MD, PhD
Eli Lilly and Company
1st Department
Kosan Biosciences
of Medicine
Kyphon, Inc.
Center for Oncology
ZIOPHARM Oncology
and Hematology
Wilhelminenspital
Vienna, Austria
Thursday, June 7, 2007 7:30pm
at the VIENNA KURSALON Vienna, Austria
For information about participating in this evening, please contact Suzanne Battaglia at SBattaglia@myeloma.org or 800-452-CURE (2873)
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)
PERMIT NO. 665
Change Service Requested
F
oundation
y
eloma
M
I
nternational
©2007,
U.S.A.
in
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
P
rinted