Myeloma
Today SPRING2008
Volume 7 Number 6
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
Dr. Jesus San Miguel, IMF Scientific Advisor, board mem-
Mark Di Cicilia, IMF Director and long-time friend of the
ber of the Spanish Hematology and Genome Foundations,
Foundation, talks about his relationship with Susie and Brian
national councilor of the International Society of
Novis, and how he became involved with the myeloma com-
Hematology, and board councilor of the European
munity. He also shares his reasons for his continued commit-
Hematology Association discusses the approach to front-
ment to the fight against myeloma. PAGE 4
line myeloma therapy in Europe and summarizes his find-
Dr. Alan Solomon
ings as the principal investigator of the VISTA clinical trial
, member of the IMF Scientific Advisory
of VELCADE®.
Board and professor of medicine and head of the Human
PAGE 7
Immunology and Cancer Program at the University of
Dr. Keith Stewart, IMF Scientific Advisor and multiple
Tennessee Graduate School of Medicine, talks about his
myeloma specialist at the Mayo Clinic, provides an over-
background as a medical scientist and about his work with
view of current clinical trials in the field of myeloma. Dr.
primary (AL) amyloidosis. PAGE 5
Stewart discusses studies for newly diagnosed patients
Christine McClay
who are proceeding to transplant and for those who are
, mother of four and a nine-year myeloma
not, studies in the relapse setting for refractory patients,
survivor, shares her story of challenges and miracles, opti-
and the new drugs that are showing promise in Phase I and
mism and gratitude, and the new "window on life" that the
Phase II trials.
journey with myeloma has given her. PAGE 19
PAGE 8
Dr. Brian Durie
David Brown
, IMF Chairman and Scientific Advisor
, a 10-year myeloma survivor, talks about the
and multiple myeloma specialist at the Cedars-Sinai
experiences and perspectives that led him to make profound
Comprehensive Cancer Center in Los Angeles, updates
investments in the myeloma community's search for a cure.
readers about the IMF's Bank On A Cure® research initia-
Mr. Brown is an IMF benefactor who helped provide seed
tive, including his work that was singled out as part of
funding for the Bank On A Cure® research initiative. We hope
2007's "Best of ASH" session. The study looks at DNA
that his story will inspire you as much as it does us. PAGE 21
single nucleotide polymorphisms that could predispose
Supportive Care
patients to myeloma bone disease. PAGE 9
Dr. Bharat Aggarwal, professor of Cancer Research and
IMF Hotline Coordinators, who help you address the various aspects of
Experimental Therapeutics, and Chief of Cytokine Research
myeloma in a more informed way, respond to a patient inquiry about the
Laboratory at the University of Texas MD Anderson Cancer
potential for blood clots resulting from therapy with Revlimid® (lenalido-
Center, discusses the use of natural products in cancer
mide) plus dexamethasone. PAGE 13
therapy and their potential in prevention and treatment
Also in this issue...
of myeloma. Dr. Aggarwal and his research group are
currently studying curcumin. PAGE 11
n Dear Reader by IMF president Susie Novis PAGE 3
Special Event
n Letters to the IMF PAGE 3
n News & Notes PAGE 6
Prof. Mario Boccadoro, IMF Scientific Advisor and head
n Nurse Leadership Board activities update PAGE 14
of the hematology section of the oncology division at
n Cancer Awareness: Blood Drive and
the University of Torino in Italy, receives the sixth annual
Bone Marrow Donor Registration PAGE 15
Robert A. Kyle Lifetime Achievement Award, which honors
the physician who most exemplifies a singular dedication
n Spotlight on Advocacy: 2007 summary PAGE 15
to and compassion for myeloma patients and treatment of
n Did You Know? PAGE 16
their disease. Among his many contributions to the field of
n International Affiliates: Updates from
myeloma since 1978, Prof. Boccadoro created the Italian
IMF Japan and IMF Latin America PAGE 17
The IMF is pleased
Myeloma Study Group, the first research consortium in
n Support Groups: Texas and Florida
to announce that
Italy and one of the first in Europe. PAGE 12
group profiles PAGE 18
Mrs. Loraine Boyle
n Member Events: IMFers raise funds to
has joined its
Looking for a LocaL myeLoma support group?
benefit the myeloma community PAGE 20
Board of Directors.
If you are interested in joining a support group, please visit our website
n
at www.myeloma.org or call the IMF at 800-452-CURE (2873).
Calendar of Events BACK COVER
This issue of Myeloma Today is supported by Celgene Corporation, Millennium 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
Charles Newman
E. Michael D. Scott
Loraine Boyle
Dr. Robert A. Kyle
Dr. Gregory R. Mundy
Susie Novis
R. Michael Shaw
Mark Di Cicilia
Isabelle Lousada
Matthew Robinson
Igor Sill
Michael S. Katz
Allan Weinstein
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Y.C. Chen, REPUBLIC OF CHINA
Tadamitsu Kishimoto, JAPAN
Ian MacLennan, ENGLAND
Ian Franklin, SCOTLAND
James S. Malpas, ENGLAND
Scientific Advisors
Raymond Alexanian, USA
Rafael Fonseca, USA
Antonio Palumbo, ITALY
Kenneth C. Anderson, USA
Gösta Gahrton, SWEDEN
Linda Pilarski, CANADA
Michel Attal, FRANCE
Morie A. Gertz, USA
Raymond Powles, ENGLAND
Hervé Avet-Loiseau, FRANCE
John Gibson, AUSTRALIA
S. Vincent Rajkumar, USA
Dalsu Baris, USA
Hartmut Goldschmidt, GERMANY
Donna Reece, CANADA
Bart Barlogie, USA
Roman Hajek, CzECH REPUBLIC
Paul Richardson, USA
Régis Bataille, FRANCE
Jean-Luc Harousseau, FRANCE
Angelina Rodríguez Morales,
Meral Beksac, TURKEY
Joyce Ho, AUSTRALIA
VENEzUELA
William Bensinger, USA
Vania Hungria, BRAzIL
David Roodman, USA
James R. Berenson, USA
Mohamad Hussein, USA
Jesús San Miguel, SPAIN
Leif Bergsagel, USA
Sundar Jagannath, USA
Orhan Sezer, GERMANY
Joan Bladé, SPAIN
Douglas Joshua, AUSTRALIA
Kazuyuki Shimizu, JAPAN
Mario Boccadoro, ITALY
Michio M. Kawano, JAPAN
Chaim Shustik, CANADA
J. Anthony Child, ENGLAND
Henk M. Lokhorst, THE
David Siegel, USA
Raymond L. Comenzo, USA
NETHERLANDS
Seema Singhal, USA
John Crowley, USA
Heinz Ludwig, AUSTRIA
Alan Solomon, USA
Franco Dammacco, ITALY
Jayesh Mehta, USA
Pieter Sonneveld, THE NETHERLANDS
Faith Davies, ENGLAND
Håkan Mellstedt, SWEDEN
Andrew Spencer, AUSTRALIA
Meletios A. Dimopoulos, GREECE
Giampaolo Merlini, ITALY
A. Keith Stewart, USA
Johannes Drach, AUSTRIA
Gareth Morgan, ENGLAND
Guido J. Tricot, USA
Brian G.M. Durie, USA
Gregory R. Mundy, USA
Benjamin Van Camp, BELGIUM
Hermann Einsele, GERMANY
Amara Nouel, VENEzUELA
Brian Van Ness, USA
Dorotea Fantl, ARGENTINA
Martin M. Oken, USA
David Vesole, USA
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
Development Associate
Arin Assero (aassero@myeloma.org)
Paul Hewitt (phewitt@myeloma.org)
Randi Liberman (rliberman@myeloma.org)
Director of Member Events
Meeting & Event Services
Data Specialist
Suzanne Battaglia (sbattaglia@myeloma.org)
Spencer Howard (showard@myeloma.org)
Colleen McGonigle (cmcgonigle@myeloma.org)
Hotline Coordinator
Publications Editor
Publication Design
Nancy Baxter (nbaxter@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Hotline Coordinator
Development Assistant
Director, Medical Meetings & CME Programs
Debbie Birns (dbirns@myeloma.org)
Missy Klepetar (mklepetar@myeloma.org)
Lisa Paik (lpaik@myeloma.org)
Director, IMF Europe
Regional Director, Support Groups Southeast
Webmaster
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Andrew Lebkuecher (imfsupport@charter.net)
Abbie Rich (arich@myeloma.org)
Administrative Assistant
Specialty Member Services Coordinator
Comptroller
Rachael Coffey (rcoffey@myeloma.org)
Kemo Lee (klee@myeloma.org)
Jennifer Scarne (jscarne@myeloma.org)
Director, Support Groups Outreach
Database & Inventory Control
Regional Director, Support Groups Northeast
Kelly Cox (kcox@myeloma.org)
Macky Lee (mlee@myeloma.org)
Robin Tuohy (tuohy@snet.net)
2
www.myeloma.org
Inter
P
nationallaceholder
Myeloma Foundation
Dear Reader,
We generally don't write about individuals when they pass away. However, I
The list goes on and on, but here is just a sampling
feel it is appropriate to make an exception with Rich Saletan, and to publicly
of what he did to help the IMF help others:
acknowledge the outstanding contributions he made to the IMF, and to the
Joining the IMF's Board of Directors in 2001, Rich
entire myeloma community.
Saletan was responsible for the growth of the foun-
Rich Saletan was a driving force within the IMF. He was passionate about
dation, not only in revenue but also in the innova-
the mission and about helping other patients. The impact of his efforts and
tive programs he developed. His guidance and
expertise positively changed the landscape for myeloma patients around the
expertise helped the foundation realize a 200%
world, and his legacy will continue to benefit patients for years to come.
increase in revenue from 2001 through 2007.
I met Rich in 2001 after Dr. Robert Kyle, a member of the IMF's Board of
His interest in developing programs to help myeloma patients led him to
Directors, who is also considered to be the "grandfather" of myeloma,
develop the Myeloma Matrix a comprehensive listing of drugs making
contacted me. He told me about a patient of his, Rich Saletan, who had
their way through clinical trials for myeloma patients. He also was respon-
expressed interest in getting involved with a myeloma organization. Rich
sible for the concept that led to the design of the Myeloma Manager a
had been diagnosed with myeloma in 1990, was doing great, and felt it was
computer-based program where patients can track their lab results.
time to give something back. Dr. Kyle suggested he contact us.
The IMF's cornerstone research project, Bank On A Cure®, the world's first
Myeloma specific DNA databank, was also the brainchild of Rich Saletan,
Thankfully, Rich did call us. He immediately got involved. He dramati-
from the initial concept in 2003, to the full establishment of the "Bank." The
cally and positively changed not only me, but also the Board of Directors,
Bank will lead to untold progress in how myeloma patients are treated and
the IMF as an organization, and consequently the
new drugs are developed.
lives of myeloma patients and their families.
Rich was instrumental in developing and advancing
The first time I met him in person was just after
the many programs of the IMF, including Patient &
September 11th. We were holding a seminar in
Family Seminars, publications, website, hotline, and
Stamford, CT. He came to meet me and I was real-
support groups to name a few. He was also directly
ly excited and thrilled to meet him. We had spoken
responsible for putting in place an infrastructure that
a lot on the phone, and I had my fingers crossed
has allowed the IMF to grow and prosper, meeting the
that he had the skill set we needed to help this
needs of myeloma patients and their families around
wonderful organization reach its full potential. He
the world. He came up with the positioning statement
Rich and Sue Saletan with Dr. Brian Durie
did. With over 35 years in business management,
"Until There is a Cure... There is the IMF," which is
strategic planning, and marketing, he had the experience and expertise we
recognized around the world.
needed. He also had a great sense of humor, he was calm and patient and
Rich and his wife Sue and Dr. Brian Durie and I became very good friends.
over the years I'm sure I tried all of those good qualities to the max.
It didn't take long we just clicked. And whenever we could get together
He became my mentor and my very, very good friend. He began the task of
we basked in the glow of friendship it was something very special some-
taking a "mom and pop" foundation and turning it into a grown up, well-
thing Brian and I cherish.
run, successful organization. But thankfully he left our heart and soul alone
One day when I called Rich, Sue answered. I called Rich a lot just about
because he knew that's what makes us special.
every day and sometimes several times a day. So Sue called out to him
One of the first things he did was put together a business plan for us, and
and said, "It's the Pest from the West!" And I think it was I who said, "Well
Rich worked on every one thereafter. He improved our infrastructure, and
if I'm the Pest from the West, then he's the Beast from the East!" And that's
we now have an amazing staff that is able to move the foundation forward.
what we called each other from that moment on. He'd say, "Hey Pesty," and
He improved the way we did business with our partners, which increased
I'd say, "Hello Beast..."
funding for more patient programs. He helped build our Board, and we
I miss the Beast
now have a Board that's involved in all the right ways.
Susie Novis
Letters to the IMF
Myeloma Today
The Hotline
Thank you for publishing the excellent article by Dr. Jagannath on the ben-
You have done such a splendid job of explaining the light chain, heavy
efits of serum free light chain testing in your last issue of Myeloma Today.
chain, urinary chain, and serum chain picture for me! When I am trying
I am a person with myeloma kappa free light chain only and the free
to grasp something complex, I spend a long time with bits and pieces
light chain test has been extremely helpful for me for the last five years to
of "aspects" (as I call them) of the entire scene cluttering my mind, and
monitor my response to treatment. I am very grateful for the FreeliteTM
it takes a while to get the whole mosaic glued together. You've helped
serum free light chain test and for the excellent care by my doctors. And I
tremendously. Thanks for doing such a great job. My mental chain mosaic
am forever grateful to everyone at the IMF for all the work and research you
is much closer to completion.
have done to help us deal with MM. You guys are wonderful!
Rita Kautz
Joyce Wells
800-452-CURE (2873)
3
Board of Directors
MyeloMa Today in conversation with mark Di ciciLia
How did you become a part of the IMF?
to establish ourselves in the field of myeloma.
Susie and I have been good friends for many
Our third task, which continues to this day, is
years. I remember her telling me about Brian
to create and implement innovative programs
Novis just a couple of days after they met. I
and services to benefit the myeloma com-
met him shortly thereafter, and we became fast
munity. It may be difficult for today's patients
friends. Brian's multiple myeloma diagnosis
to relate to this, but the first IMF Patient
was the result of a routine physical in prepara-
& Family Seminar was considered audacious
tion for their marriage. The diagnosis was a
by many members of the medical commu-
shock to everyone. I remember his bewilder-
nity. Before the IMF, there were no myeloma
ment and frustration at being told there was
patient education programs available. There
nothing that could be done to help him. Brian
was no myeloma hotline to call. There were no
was determined not to take his diagnosis lying
myeloma support groups to attend. There was
down. He got on the phone and started making
no entity in existence dedicated to improving
calls, insisting that people pay attention to him
the quality of life of myeloma patients while
and his disease. Eventually, he found his way
working toward prevention and a cure. At the
to the Arizona Cancer Center in Tucson, which
time, these were all very radical ideas.
is where he first met Dr. Brian Durie. As their
How would you compare that to where
doctor/patient relationship developed into a
we are today?
friendship, the idea of what later became the
International Myeloma Foundation was born.
At the early IMF seminars I attended, I remem-
Through Dr. Durie and Dr. Robert Kyle, Brian
ber spending a lot of time bringing pillows to
Mark Di Cicilia
Novis began to connect with other patients, and
people and assisting them when they needed
a myeloma community began to emerge.
to move. Today, as I look at the attendees of
IMF seminars, I often find myself needing to
As the IMF took shape, Susie and Brian Novis decided that he would
look at the identifying marks on their nametags to figure out who the
devote himself full-time to the Foundation while she kept the family going.
patients are. There is a dramatic overall improvement in the physical
He worked out of the basement of their home, an area we called "the
condition of today's patients as compared to those I met 10 or 15 years
hold." You had to practically crawl through a hole to enter the basement
ago, and the ranks of long-term survivors have grown impressively. That's
and, once you did, there was no room to even stand up straight. There was
a tangible testament to how much myeloma treatment has advanced, and
no phone down there, and I remember crawling under the house to run
the IMF is a big part of that advancement.
the telephone line to Brian's new "office." Once we had the phone and the
fax installed, I remember us looking around "the hold" and saying, "Yeah,
Has your relationship to the IMF changed over the years?
this is the International Myeloma Foundation."
The most significant change took place in 2005 when I became a cancer
patient myself. Through my work with the IMF in the preceding years, I
Almost from the beginning of the IMF, my attitude was, "What can I do to
had thought that I understood the challenges that cancer patients face.
help?" I worked with my hands when needed, offered emotional support
The day I became a patient, my entire outlook on what it means to have
and technical assistance, and got the IMF's first phone and voicemail sys-
cancer changed. My commitment to the IMF has remained the same over
tem donated by the corporation I worked for. Then myeloma took the life
all these years, but it is one thing to be compassionate about a disease
of my dear friend and significantly altered the life of another dear friend.
and it's another thing entirely to experience it yourself. My diagnosis has
That's when I got really angry at this disease, and reaffirmed my commit-
helped me find a new way to identify with what the people the IMF serves
ment to participate in the fight against it in any way I could. A couple of
have to go through.
months later, Susie invited me to join the IMF Board of Directors.
In your opinion, what are the IMF's most significant
How did your background contribute to the early days of the
accomplishments?
IMF Board?
From day one to the present day, we have never lost sight of the fact that
My background is predominantly in technology marketing, and my early
the patient is #1. It's all about the patient. That's our focus, and it is cen-
contributions to the IMF were focused in the program areas that we
tral to absolutely everything that the IMF does. Our programs and services
wanted to develop. It was during this time that Susie transitioned from
have grown and changed, but our focus has never wavered.
the corporate world into the presidency of the IMF. From the early days
to the present, she has done and continues to do a phenomenal job, and
How do you see the future direction of IMF efforts?
I see my role with the IMF as doing whatever I can to assist all her efforts.
The IMF is instrumental in innovative myeloma research that could not
And I am both humbled and honored to do this.
have even been conceived of 10 years ago. We now have the ability to
significantly impact the field of myeloma by directly contributing to the
What challenges did the IMF face at that time?
most promising research. In addition, the IMF is the strongest voice for a
In the beginning, our biggest challenge was raising enough funds for the
better future for the myeloma patient community, and we are doing this
IMF to simply survive from month to month. Our second challenge was
internationally. mt
4
www.myeloma.org
Scientific Advisory Board
MyeloMa Today in conversation with Dr. aLan soLomon
Please tell us a little about your background.
function diminishes. For example, as proteins
Born in New York City and educated in its public
are deposited into the muscles of the heart, it
school system, I attended Bucknell University and
cannot pump as effectively, and this may lead
Duke University School of Medicine. After complet-
to heart failure. If amyloid is deposited into a
ing an internship at Mount Sinai Hospital in New
kidney, you will have the progressive impair-
York, I chose to undergo an additional eight years
ment of kidney function. This may necessitate
of clinical and research training at the National
dialysis in order to avoid renal failure. There is
Institutes of Health's (NIH) National Cancer Institute
typically less bone destruction in amyloidosis
(NCI) and at the Rockefeller University Institute for
than in myeloma because amyloidosis does not
Medical Research. My career at the University of
involve the same level of proliferation of plasma
Tennessee began in 1966. It is here that I developed
cells in the bone marrow.
an integrative basic and clinical research program
Is primary (AL) amyloidosis reversible or
involving, respectively, the elucidation of human
treatable?
antibody and structure/function and care of patients
with monoclonal immunoproliferative disorders.
Because, like myeloma, amyloidosis starts in the
For the past 40 years, I have served as professor
bone marrow, the treatments for amyloidosis
of medicine and head of the Human Immunology
include all the same drugs used in myeloma.
and Cancer Program at the University of Tennessee
These include high-dose chemotherapy fol-
Graduate School of Medicine.
lowed by stem cell transplantation, as well as
therapy with the novel agents thalidomide,
What is your current professional focus?
Alan Solomon, MD
Revlimid® (lenalidomide), and VELCADE®
To translate discoveries made in the laboratory into
University of Tennessee
(bortezomib). As in myeloma, the goal of treat-
Graduate School of Medicine
clinical practice. This has been especially relevant
ment is to prevent formation of the abnormal
Knoxville, TN
during the past 10 years as my work has become
protein. If treatment results in reduction or
focused on amyloid-associated illnesses, particularly primary (AL) amy-
elimination of the protein that is causing the problem, it is possible to
loidosis, and the development of new methods for the diagnosis and
achieve improvement in organ function, which may be referred to as
treatment of this disorder. My most recent efforts involve the utilization
`reversing' the disease. Without treatment, the prognosis for amyloidosis
of amyloid-reactive monoclonal antibodies that we have discovered. In
patients is not very good.
animal models, we have shown that these antibodies incite the body's
How frequently or infrequently do both disorders occur in the
immune reaction to destroy amyloid. Additionally, we have shown experi-
same patient?
mentally that when a radioisotope is attached to these antibodies, they can
be used to visualize amyloid deposits in the body by PET/CT scans, which
It is commonly held that between 10% and 15% of myeloma patients will
would help both to diagnose amyloidosis and to document response to
develop amyloid but, in all my experience over the years, I have only seen
treatment. In the next phase, we hope to test this agent in patients with
one or two such cases. In my opinion, this is an unusual and rare occur-
AL amyloidosis. If the imaging agent works, it will provide an invaluable
rence. The protein being formed by the abnormal plasma cells must have
diagnostic tool for doctors caring for patients with this disease and will
the potential to form amyloid, and in many cases, the abnormal protein
move us closer toward using the antibody for treatment. We have received
does not have this ability. Also, with the newer and more effective treat-
Investigational New Drug (IND) authorization from the Food and Drug
ments for myeloma currently available, there is less production of the
Administration (FDA) to use this agent in a Phase I exploratory study of up
abnormal plasma cells and, therefore, less opportunity for the develop-
to 33 patients, and we are very excited about starting this work.
ment of amyloid.
How is primary (AL) amyloidosis related to multiple myeloma?
What about the reverse order? Can someone with amyloidosis
develop myeloma?
In both illnesses there is a proliferation or growth of plasma cells in
the bone marrow. These plasma cells, which normally make antibodies,
I don't think I've ever seen anyone with amyloid develop myeloma.
continue to produce a single (monoclonal) antibody species. In myeloma,
How did you become interested in working in this field?
there are generally more plasma cells present in the bone marrow.
Typically, there is bone destruction and the resulting consequences of
Many years ago, when I was an intern, I had under my care a patient with
that destruction. Myeloma is also characterized by the production of a
Waldenström's macroglobulinemia, another disease related to myeloma.
fragment of an antibody molecule called the "light chain" or "Bence Jones"
Subsequently, when I was a clinical associate at the NIH, we had a num-
protein. This protein can clog the kidneys. This clogging causes kidney
ber of myeloma patients with Bence Jones. The treatment we developed
damage in myeloma patients with this particular protein abnormality.
for our patients was plasmapheresis, a process where we take the blood
and discard the plasma cells before returning it to the patient. This was
Primary (AL) amyloidosis is a disease process where there is abnormal
the foundation for the work I have done in the years that followed, trying
deposition of fragments of the light chain portion of the antibody mol-
to elucidate factors that make antibody proteins behave in an abnormal
ecule into various tissues and organs of the body, such as the heart,
way; learning more about the human immune system from studying these
liver, spleen, kidneys, brain, etc. As these proteins are deposited, organ
Continues on Page 6
800-452-CURE (2873)
5
News & Notes
Major New Intergroup
stage for the return of thalidomide to Europe with safe distribution for
SWOG/ECOG/CALGB Study
an important indication. Although historically linked to an epidemic of
Dr. Brian G.M. Durie is the principal investigator of a new clinical trial set
birth defects when prescribed for pregnant women, a proprietary risk
to open May 1, 2008. This intergroup effort by the Southwest Oncology
management system in the United States has seen more than 100,000
Group (SWOG), the Eastern Cooperative Oncology Group (ECOG),
prescriptions without a single incidence of birth defects, demonstrating
and the Cancer and Leukemia Group B (CALGB) will study Revlimid®
that the drug can be used safely. Hematologist Ralph Naumann (University
(lenalidomide) plus low-dose dexamethasone versus VELCADE® (bort-
Clinic, Dresden, Germany) prescribes thalidomide for his patients even
ezomib), Revlimid, and low-dose dexamethasone as frontline treatment
though he personally has experienced the effects of thalidomide since
of multiple myeloma, with stem cell transplant optional. Accrual is
his own mother took it when she was pregnant with him. He has stated:
planned to include approximately 600 patients. For more information,
"Thalidomide is not a bad drug, it's just a drug that was badly used, and
please visit the IMF website at www.myeloma.org or call the Hotline at
for the many myeloma patients today who are benefiting from thalido-
800-452-CURE (2873).
mide, that's a crucial distinction."
FDA "Priority Review" of VELCADE®
90% Overall Response to New Combination
The decision of the Food and Drug Administration (FDA) to grant "priority
Data from the Phase II BiRD study provide a new option for newly
review" for VELCADE® (bortezomib) in newly-diagnosed myeloma recog-
diagnosed patients with multiple myeloma, whether or not they sub-
nizes the benefits of powerful new therapies and the need to get them to
sequently proceed to stem cell transplant. The findings show a superb
more patients sooner. VELCADE is already approved for myeloma patients
overall response rate of 90.3%. Using European Group for Blood and
who have received at least one prior therapy. Priority review status accel-
Marrow Transplantation (EBMT) criteria, 38.9% of the patients achieved
erates official FDA review for newly diagnosed patients from ten months
a complete response and 73.6% achieved a 90% or greater decrease in
to six months, which means VELCADE could be approved for expanded
M-protein levels. Using the new International Myeloma Working Group
use this June. So far, more than 85,000 patients have been treated with
(IMWG) criteria - recently developed to better define the magnitude of
VELCADE worldwide.
a complete response 30.6% of the patients achieved the new stringent
complete response (sCR). sCR requires the complete absence of M-protein
Thalidomide Regimen in Europe
by immunofixation, normal free light chain ratio, and a negative marrow
The positive opinion from the European Medicines Agency (EMEA) could
biopsy by immunohistochemistry. The findings have been published in
clear the way for a new treatment regimen in Europe. The decision rec-
the online version of the journal Blood. The BiRD regimen is made up
ommends approval of thalidomide in combination with melphalan and
of Biaxin® (clarithromycin), REVLIMID® (lenalidomide), and a low dose
prednisone (MP) for newly diagnosed myeloma patients over age 65.
of the steroid dexamethasone. The BiRD treatment did not impede stem
"Thalidomide is available in the United States, Australia, New Zealand and
cell transplantation, and demonstrated a two-year event-free survival rate
elsewhere now, and we would like all patients to have safe access to its
of 85.2% for patients who underwent stem cell transplant and 75.2% for
demonstrated benefits," said Susie Novis, president and co-founder of the
those who continued on therapy without transplant. In addition to the
IMF. This positive opinion from EMEA for thalidomide with MP is based
response criteria, the findings from the BiRD study, like a previous study
on a multi-center clinical trial showing average survival of more than 4
of REVLIMID with low-dose dexamethasone, show response deepening
years, a year and a half more than MP without thalidomide. Studies have
over time: the average time to partial response was just over six weeks, but
also shown improved response by adding VELCADE® (bortezomib) or
average time to complete response was 22 weeks, and stringent complete
REVLIMID® (lenalidomide) to MP. The EMEA recommendation sets the
response was reached at 38 weeks. "This is an exciting time for the treat-
ment of myeloma," said Susie Novis, president and co-founder of the IMF.
"We now have multiple studies showing improved response and survival
ALAN SOLOMON -- continued from page 5
with various regimens including REVLIMID/dexamethasone in previously
treated and newly diagnosed patients, DOXIL®/VELCADE® for previously-
proteins; and trying to develop treatments to either eliminate these
treated patients who want a steroid-free regimen, and thalidomide/mel-
proteins or to make them less toxic to the body.
phalan/prednisone in older patients not eligible for transplant."
What is your outlook for the future?
Obesity Increases Cancer Risk
With improvements in diagnostic modalities and new treatments on the
British researchers led by Dr. Andrew Renehan analyzed 144 published
horizon, I am quite optimistic. Our hope is that if these illnesses cannot
studies and more than 200 sets of data involving more than 282,000
be cured at present, they will at least become chronic in the near future,
people. This study, which has been published in The Lancet medical
which will improve the quality of live and the longevity of patients with
journal, reveals that obesity can lead to common and less common forms
these diseases. mt
of cancer. "We showed an association with less common cancers that had
not been shown before," says Dr. Renehan. According to the study, these
Editor's Note: Dr. Solomon has been a recipient of the United States Public
forms of cancer include leukemia, multiple myeloma, esophageal cancer,
Health Service (USPHS) Career Development Award, an American Cancer
gallbladder cancer, and non-Hodgkin's lymphoma. "Being able to quantify
Society Clinical Research Professorship, and research grants from the NIH,
cancer risk in relation to body weight should help public health officials
National Science Foundation, and American Cancer Society, as well as
grants from biopharma industrial sources and private foundations. He is
estimate the impact of both the aging of the population and the obesity
the author of over 190 scientific publications and is a former member of
epidemic on cancer rates over the next decade and beyond." Obesity is
the NCI's Clinical Cancer Program Review Committee and the Board of
one of the main health problems in the world, with 400 million people
Scientific Counselors. He was recently awarded a five-year renewal on a
currently classified as obese by the World Health Organization, the public
grant from the NCI, originally awarded to Dr. Solomon in 1965, making it
the longest active grant in NIH history.
health arm of the United Nations. mt
6
www.myeloma.org
Scientific & Clinical
europe upDate: frontLine myeLoma therapy
Myeloma Today in conversation with Dr. Jesus San Miguel
Prof. San Miguel, please share with our
What other clinical studies of frontline
readers the current state of frontline
therapies are ongoing in Spain?
therapies available to myeloma patients
The third clinical trial studying frontline therapy
in Spain, outside the clinical trial setting.
is focusing on high-risk smoldering myeloma.
In Spain, outside of clinical trials, we can only
High-risk smoldering myeloma patients have
use the following therapies: For transplant
both more than 10% plasma cells in the bone
candidates, what is available is either conven-
marrow and more than 3 grams/dL of parapro-
tional chemotherapy like the VAD (vincristine,
tein. These patients are randomized to receive no
Adriamycin®, dexamethasone) regimen or the
treatment, which is the conventional approach,
more commonly used PETHEMA (Programa
versus Revlimid plus low-dose dexamethasone.
para el Tratamiento de Hemopatías Malignas)
You are the principal investigator of the
induction chemotherapy regimenVBMCP/
VISTA clinical trial of VELCADE. What can
VBAD, followed by an autologous stem cell
you tell us about this study?
transplant. For elderly patients or others not
proceeding to transplant, the only approved
The VISTA trial is a randomized controlled study
treatment is the conventional chemotherapy
that has been conducted in 22 countries with
of melphalan and prednisone. These are
the participation of 151 institutions and 682
the only approved options for upfront ther-
patients over approximately a year and a half. It
apy. None of the three major novel agents
was designed in order to compare nine 6-week
thalidomide, Revlimid® (lenalidomide),
cycles of melphalan and prednisone (MP) versus
or VELCADE® (bortezomib) have been
Jesus San Miguel, MD, PhD
the same schedule of MP plus VELCADE (MPV).
University Clinic Hospital
approved yet in the upfront setting.
The primary end point of the study was time to
Salamanca, Spain
progression (TTP). The secondary end points
How is this circumstance likely to change?
were: complete response rate, overall response rate, duration of response,
In Spain, we have a very active comparative group, known as PETHEMA-
time to next therapy, and progression-free survival (PFS). The VISTA trial
GEM (Grupo Español de Mieloma), which includes more than 80 medical
was stopped early based on the recommendation of an independent
centers across the country. Within this group, we currently have two
monitoring committee due to the superiority of the MPV arm in all the
ongoing clinical trials for newly diagnosed patients: one clinical trial for
efficacy end points. The results of this trial showed high efficacy in terms
transplant candidates under age 65 and one clinical trial for patients over
of response with an overall response rate of 82% (including CR of 30% by
65 who are not transplant candidates.
EBMT criteria), which is significantly superior to the 50% response rate
(including CR, of 4% by EBMT criteria) in the MP arm. There was also
Please tell us about the study of newly diagnosed patients who are
significant prolongation in TTP with an approximate 52% reduction in
candidates for a transplant.
risk of progression in the MPV arm, and a median TTP of 24 months in
The GEM randomized study of transplant candidates is comparing three
the MPV arm versus 16.6 months in the MP arm. The improved TTP was
induction regimens. The first one is based on four cycles of chemother-
observed in all study subgroups, including elderly patients, those with
apy followed by two cycles of VELCADE. The second arm is thalidomide
poor cytogenetics, those with impaired renal function, and patients with
and intermediate-dose dexamethasone (thal/dex). The third group is
advanced clinical stage of myeloma. In addition, this trial showed a signifi-
receiving thal/dex plus VELCADE. All patients are receiving six courses
cant benefit in overall survival (with approximately 40% reduction in risk
of induction therapy and subsequently an autologous transplant with
of death for patients treated with MPV) and a projected overall survival
melphalan 200 mg/m2. Three months after the transplant, we proceed
(measured at two years as 82.6% with MPV versus 69.5% with MP). The
with a second randomization comparing three maintenance regimens. In
EBMT (European Group for Blood and Marrow Transplant) criteria were
the first arm,patients receive interferon, in the second they receive low-
used to evaluate response and TTP.
dose thalidomide, and in the third arm patients receive thalidomide plus
VELCADE.
What is the toxicity profile associated with MPV?
The frequency of serious adverse events was higher in the MPV arm (46%)
What about the newly diagnosed patients who are not transplant
as compared with the MP arm (36%). There was no major difference in
candidates?
hematological toxicity, but there were more Grade 3 adverse gastrointes-
In this group, we are comparing melphalan and prednisone plus
tinal events, 19% in the MPV arm versus 5% in the MP arm. There was a
VELCADE (MPV) versus thalidomide, prednisone, and VELCADE. All
higher incidence of Grade 3 peripheral neuropathy (PN) (13%) but, in
patients are receiving six cycles of therapy before being randomized to a
75% of the cases, the PN was resolved or improved in a median of 64
maintenance therapy of either thalidomide plus VELCADE or prednisone
days. In both study arms 14% of patients discontinued therapy due to
plus VELCADE.
adverse events.
Continues on Page 10
800-452-CURE (2873)
7
Scientific & Clinical
cLinicaL triaLs upDate
Myeloma Today in conversation with Dr. Keith Stewart
Dr. Stewart, please help our readers make better
(in the ECOG trial). The results have been reported,
sense of the rather large number of current clinical
but not yet published, that the combination of
trials in the field of myeloma.
Revlimid and low-dose dex is the preferred combina-
For the purposes of this overview, perhaps it would be
tion. The cooperative group in France has reported
helpful to divide clinical trials into several categories.
that Velcade plus dex works better than VAD che-
One category is trials employing drugs already approved
motherapy, which is still used in many parts of the
by the Federal Drug Administration (FDA) in the front-
world. Another trial demonstrated that the Velcade,
line setting for newly diagnosed patients. This first
thalidomide, and dex combination showed improved
category is divided into two sub-categories: patients
time to response over thalidomide and dex alone. In
who are proceeding to transplant and those who are
other words, several trials have demonstrated that
not. The second category is trials employing drugs not
Velcade and Revlimid are worthwhile additions to
yet approved by the FDA in the relapse setting for refrac-
upfront therapy. In the newer generation of trials,
tory patients.
we are looking to see if combining these two novel
agents together or with other drugs such as cyclo-
A quick side question: Is the use of transplantation
phosphamide, doxil or steroids might be better than
in myeloma declining?
using either one of them alone.
A. Keith Stewart, MD
Some think that the percentage of patients proceeding
Mayo Clinic
Has the availability of Revlimid caused a decline
to transplant is on the decline. This impression may arise
Scottsdale, AZ
in the use of thalidomide?
from the news about novel agents that are producing
good results, or from patients who are "voting with their feet" in opting
Our impression is that thalidomide is possibly less potent and slightly
out of transplant. But transplantation still has a place in myeloma treat-
more toxic for patients than Revlimid. For these two reasons, Revlimid
ment, especially with younger patients, and remains the option that is
is gaining dominance over thalidomide in the US. Outside the US, tha-
recommended by many academic centers. Certainly, all patients who are
lidomide remains more accessible for myeloma patients than Revlimid,
candidates should discuss this option with their physicians and give it seri-
and it is still a very useful standard. It is also important to note that there
ous consideration. We hope that in the near future, some of the clinical
is a set of clinical trials that have been published recently with low-dose
trials currently underway will help us better answer the question about
thalidomide as maintenance after transplant, and three out of three trials
the potential added value of transplantation for patients who are able to
have shown that thalidomide as maintenance is beneficial to patients who
achieve a complete remission (CR) prior to transplantation.
have not achieved CR after transplant. So there is definitely a continuing
role for thalidomide in myeloma.
Which current clinical trials are relevant to newly diagnosed
patients who are planning to have a transplant?
Now let's talk about the clinical trials for newly diagnosed patients
who plan to proceed to transplant.
There are a number of large Phase III clinical trials going on across the
US that look at combinations of newer drugs to try to determine which
SWOG has a trial of VELCADE, Revlimid, and dex versus VELCADE and
combinations are more successful in producing a response, particularly
dex. ECOG has a similar trial that allows one to two months of any non-
CR. These trials usually accrue between 300 and 700 patients and offer
VELCADE therapy prior to the same regimens as the SWOG trial. One
the most state of the art therapy available. The combinations being studied
Millennium-sponsored Phase III trial (known as EVOLUTION) is compar-
usually include Velcade® (bortezomib) or Revlimid® (lenalidomide) com-
ing a three-drug cocktail of VELCADE, Revlimid, and dex, with a four-drug
bined with older drugs or combined together. Trials are asking whether
cocktail of the same combination plus cyclophosphamide.
combinations of three drugs are better than two or whether four drugs are
What studies are looking at treatment for relapsed patients?
better than three and, if so, are the side-effects profiles of such combina-
There are around 40 new drugs being studied in relapsed myeloma,
tions acceptable? Are combinations improved (or not) by the addition of
so there are many clinical trials in this category and most large cancer
steroids during induction? The impetus for these trials is to find answers
centers are participating in at least some of these. Many of these trials
to these urgent questions.
include existing agents. Some of the new drugs that are currently show-
Are the clinical trials you are referring to close to producing
ing promise are carfilzomib (a proteasome inhibitor), LBH589 (a histone
meaningful data?
deacetylase inhibitor), and CC4047 (a next generation version of thali-
Some of these trials for newly diagnosed patients are still accruing
domide and Revlimid). These are mostly Phase I and Phase II trials, but
patients, others are ongoing. The only trials in this category that recently
there is also one large international Phase III trial currently underway that
closed and will soon be publishing data are the Eastern Cooperative
is comparing VELCADE plus tanespimycin, (KOS-953) that blocks Heat
Oncology Group (ECOG) and the South West Oncology Group (SWOG)
Shock Protein 90 (Hsp90) to VELCADE alone. This trial will show whether
trials that looked at Revlimid and dexamethasone (dex) versus dex alone
tanespimycin improves VELCADE response. Other similar trials are under-
(in the SWOG trial) and Revlimid with low-dose dex and high-dose dex
way adding new drugs to Velcade.
Continues on Page 10
8
www.myeloma.org
Scientific & Clinical
Bank on a cure® research initiative upDate
Myeloma Today in conversation with Dr. Brian Durie
In the Winter 2007/2008 issue of Myeloma Today,
How did you identify and analyze the DNA
we announced that your abstract presentation
patterns?
on results from Bank On A Cure® research
A big part of this was the design of the experiment.
was singled out as part of 2007's "Best of ASH"
Once this was accomplished, we were able to proceed
session. Please tell us about this project.
with the analysis. The patient DNA was genotyped
For several years now, we have been conducting DNA
and studied using the Affymetrix® custom SNP chip,
testing as part of the IMF's Bank On A Cure® research
which was designed and developed by teams at the
initiative. We have been looking at different types of
University of Minnesota and the Royal Marsden in the
correlations, such as the risk of deep vein thrombosis
UK as part of the Bank On A Cure project. This chip
(DVT) with the use of thalidomide and/or Revlimid®,
was used to assess presence or absence of relevant
the potential risk of peripheral neuropathy (PN) with
genetic polymorphisms. Testing revealed several SNPs
the use of VELCADE® (bortezomib), and a variety of
that are significantly correlated with the statistical
other issues. One important issue in myeloma is bone
likelihood of bone disease in patients with myeloma.
disease. Some myeloma patients have little or no bone
The direct biologic significance is supported by the
involvement, while others experience severe bone
strong correlations with the number of focal lesions
destruction. Myeloma cells depend upon the bone
and the direct amount of DKK1 RNA (ribonucleic acid)
marrow microenvironment for growth and survival.
Brian G.M. Durie, MD
measured in gene expression studies with bone mar-
Aptium Oncology
Bone disease in myeloma occurs as a result of the com-
row myeloma cells from the same patients. This is the
Cedars-Sinai Comprehensive
plex interactions between myeloma cells and the bone
Cancer Center
first time that the potential role of microenvironmental
marrow osteoclasts, osteoblasts, and other accessory
Los Angeles, CA
SNP patterns has been substantiated in a fashion which
cells and microenvironmental components. Until now,
reveals a complementary role linking SNP pattern with
no studies have evaluated the potential impact of genetic polymorphisms
myeloma cell DKK1 gene expression patterns in reflecting the predisposi-
upon the functioning of the bone marrow microenvironment and the
tion to myeloma bone disease.
development of bone disease. So I realized that we could study DNA single
This first evaluation of SNPs linked to bone disease in myeloma has
nucleotide polymorphisms (SNPs) that would either predispose patients
revealed several important correlations which now deserve more detailed
to get myeloma bone disease or not.
investigation. An important adjunct to these initial SNP correlations is the
How did you select the patient population to study?
formal evaluation of the correlated SNPs in large epidemiologic studies.
For this project, we selected the data set from the myeloma center at
Such studies are currently underway in collaboration with the NCI epide-
the University of Arkansas in Little Rock, as their patient population has
miology branch. In addition, the results with the customized targeted SNP
extremely good documentation of bone disease. Our analyses included
chip are being compared and contrasted with wider genome screening to
282 patients with previously untreated myeloma who were enrolled in the
identify unknown SNPs which are potentially relevant. Studies are already
Little Rock "Total Therapy 2" (TT2) protocol. These patients had full skele-
planned in this regard to evaluate both the Affymetrix 6.0 SNP chip and
tal x-ray, MRI, and PET scanning as a baseline. This was the most complete
the Illumina 500 chip.
and detailed data set to document myeloma bone disease of any center in
Has the study produced any surprising results?
the world. These patients were then classified based upon the number of
Interestingly, one separate unexpected finding was the strong correlations
lytic lesions: patients with limited or no bone disease (x-rays and/or MRI
with SNPs linked to drug and/or toxin metabolism. One of the "top" SNPs
negative or with 0-7 focal lesions), patients whose x-rays and/or MRI were
that showed up in the statistics was the SNP that influenced the activation
positive with 7-20 lesions, and those who had more than 20 lesions.
of the DKK1 pathway and indicated a predisposition to bone disease that
There was an added advantage to using the Little Rock data set. Dr. John
relates to DKK1. In other words, patients with bone disease were more
Shaughnessy had studied the bone marrow samples from all these patients
likely to have a DNA pattern where DKK1 could be activated. We called
to see what they were producing that was causing the bone disease, and
our statistical analysis "recursive partitioning," which is like a branching
then published a paper about DKK1, a protein produced by the myeloma.
tree. We found that there were four dominant SNPs: rs 3766934 Epoxide
DKK1 shuts down the osteoblasts, which normally heal bone, while
hydrolase (EPHX1); sr 3783408 MAP4K5 kinase; sr 1062637 RNA helicase
increasing destructive osteoclast activity, which is a characteristic feature
DDX18; and sr 3181366 TNFSF8-TNF-. These SNPs influenced DKK1
of myeloma. Expression of DKK1 is regulated by a combination of intrinsic
production, osteoclast activation, and the ability to metabolize environ-
genomic factors, specific stimuli, and interactions with the bone mar-
mental toxins, specifically dioxins. The predisposition to bone disease
row microenvironment. An important mechanism for DKK1 activation is
seems to be related to the ability to detoxify dioxins and polycyclic aro-
through a pathway that is in turn activated by microenvironmental oxida-
matic hydrocarbons (PAHs). Further studies are required to understand
tive stress, which is caused by a system's ability to detoxify or easily repair
the significance of these correlations.
the damage resulting from reactive oxygen. In our project, we looked for
How do you see the future of this direction of myeloma research?
the DNA pattern that would either allow patients to resist the myeloma
The focus of further studies is likely to include a transition from target
bone disease or would predispose them to it.
SNP to genome-wide screening, working towards personalized molecular
Continues on Page 10
800-452-CURE (2873)
9
Scientific & Clinical
SAN MIGUEL / EUROPE UPDATE -- continued from page 7
STEWART / CLINICAL TRIALS UPDATE -- continued from page 8
What conclusions have you drawn based on your experience
What about trials for newly diagnosed patients who are not
with MPV?
planning to have a transplant?
I think these data are very important for patients over age 65. I would
For newly diagnosed patients who are not going on to transplant, there
summarize the results in four relevant findings. The first is the high
are several large Phase III clinical trials opening. One example is Ea106,
response rate achieved with MPV. The second is the early detection of the
an inter-group trial (ECOG, CALGB, and the National Cancer Institute of
survival benefit. The third is the prolonged time to subsequent therapy,
Canada) that is accruing 560 patients to compare melphalan, prednisone,
otherwise known as the treatment-free interval. The fourth is that the
and thalidomide (MPT) with melphalan, prednisone, and Revlimid (MPR).
efficacy of MPV treatment is consistent across all patient groups, including
MPT is now considered by many in the field to be the treatment of choice
those with poor prognostic characteristics, such as age greater than 75
for patients who are not proceeding to transplant. But studies have shown
years, impaired renal function, and high-risk cytogenetics. My experience
that Revlimid may be slightly better than thalidomide, so the intent of this
with the VISTA trial and MPV is just one example of how participation in
head-to-head comparison is to show whether MPT or MPR results in bet-
a clinical trial is often the best way to secure the best treatment a patient
ter survival. Toxicity of the regimens will also be evaluated. In addition,
can receive. mt
monthly questionnaires will track each participant's quality of life, as this
Editor's Note: Prof. San Miguel is a Scientific Advisor to the IMF, a
is a very important end point of our study. If one of the arms of the study
board member of the Spanish Hematology and Genome Foundations,
is shown to be better, we need to know whether or not this is associated
the National Councillor at the International Society of Hematology, and
with reduced quality of life in the patient population.
the Board Councilor of the European Hematology Association. He is the
recipient of the 2007 Waldentröm Award and a seven-time prize recipient
There are also industry-sponsored trials. Millennium Pharmaceuticals
of the Spanish Society of Haematology and Spanish Cancer Association.
recently reported the results of a trial of VELCADE, melphalan, and pred-
Prof. San Miguel has published more than 450 articles, 80 book chapters,
nisone (MPV) versus melphalan and prednisone and showed the MPV arm
and 340 abstracts.
to be superior. They are now going to study MPV versus VELCADE, thali-
domide, and dex versus VELCADE and dexamethasone alone. Celgene is
DURIE / BANK ON A CURE UPDATE -- continued from page 9
studying MPR versus melphalan and prednisone in Europe and will study
Revlimid low dose dexamethasone versus MPT in the US.
classification for treatment and prevention.
Would you tell us about studies looking at bone and kidney disease, etc.?
What other research is being done under the Bank On A Cure
There are studies looking at complications of Zometa® and trials of
umbrella?
new drugs for bone disease, such as denosumab. There is also a study
With cooperation from the Intergroupe Francophone du Myélome
of VELCADE and bone formation in patients with relapsed/refractory
(IFM) we are studying the patient DNA from a recent IFM clinical trial of
myeloma. There are no new trials looking at kidney disease, but there
VELCADE® (bortezomib) plus dexamethasone versus VAD (vincristine,
will be a study of how to properly dose Revlimid, which is excreted by
Adriamycin®, dexamethasone) as frontline therapy before a double trans-
the kidneys. A study looking at infection and the role of antibiotics during
plant. We set up a very detailed protocol for peripheral neuropathy (PN)
chemotherapy was completed recently, and we expect to know results
testing at baseline, then a protocol to document PN with treatment. The
within six months to a year. There are also some studies that are looking
aim of this project will be to look at the predisposition to PN with the use
at the side effects of drugs.
of VELCADE. If we are able to identify people who are likely to develop
PN, this would have significant implications. Another related study will be
Why should patients consider participation in clinical trials?
done in cooperation with Prof. Sonneveld in the Netherlands. Please stay
In the US, participating in a clinical trial is one way for patients to gain
tuned for further reports. mt
access to drugs that may not be covered by their insurance company.
Outside the US, participating in certain clinical trials gives patients access
Editor's Note: Dr. Durie is a co-founder of the IMF and serves as its
to novel agents that are otherwise unavailable to them. Often the treat-
Chairman, as well as member of its Scientific Advisory Board. He is the
National Director for Hematologic Malignancies for Aptium Oncology
ment being given during clinical trial participation will be more effective
Inc. and is the Specialist in Multiple Myeloma and Related Disorders at
than some of the therapies available outside the study setting. There is a
the Cedars-Sinai Outpatient Cancer Center in Los Angeles. He co-chairs
lot of exciting clinical trial activity worldwide hundreds of studies across
the Southwest Oncology Group myeloma committee. Dr. Durie is the
recipient of many professional honors, including the Robert A. Kyle Lifetime
the spectrum and I would like to encourage patients to participate in the
Achievement Award, which honors the physician who most exemplifies a
process of the development of the best, most modern, and most effective
singular dedication to and compassion for myeloma patients and treat-
therapies. mt
ment of their disease. He is a Leukemia Society of America Scholar, a
U.S. Hematologic Research Foundation Annual Awardee, and a Marquis
Editor's Note: Dr. Stewart graduated from medical school at the University
Member "Who's Who in America" and "The Best Doctors in America."
of Aberdeen in Scotland, and trained in internal medicine at Queen's
Among Dr. Durie's many appointments and research accomplishments, he
University in Canada. He has also completed an MBA from Richard Ivey
co-created the Durie/Salmon Myeloma Staging System, the first system ever
Business School at the University of Western Ontario. Currently, Dr. Stewart
developed to classify myeloma in a standard, universal fashion, and the
is Professor of Medicine at Mayo Clinic, with specialized interests in
vital building block for the International Staging System, also co-developed
biology and treatment of multiple myeloma, Waldenstrom's macroglobu-
by Dr. Durie with the International Working Group. Dr. Durie has written
linemia, amyloidosis, drug development, clinical trials, correlative biology,
over 400 research papers, 30 book chapters, and five books, work which
has impacted myeloma treatment around the world.
and genomics.
10
www.myeloma.org
Scientific & Clinical
CurCumin in multiple myeloma
Myeloma Today in conversation with Dr. Bharat Aggarwal
Please tell us about the use of natural products in
black pepper or long pepper) at 10 mg in two divided
cancer therapy.
doses for 12 weeks. Blood was collected before and
The use of natural products in cancer therapy is noth-
after treatment with curcumin and examined for
ing new. Between the years 1981 and 2002 almost
expression of NF-B, cyclooxygenase (COX)-2 (an
74% of all drugs approved by the US Food and Drug
enzyme that is regulated by NF-B and controls
Administration (FDA) were either natural products,
inflammation and proliferation), and phospho-STAT3
were based thereon, or mimicked them in one form or
(signal transducer and activator of transcription) as
another. Many of the active chemical entities in these
surrogate biomarkers.
natural products have already been identified. So it is
What results did you obtain?
a matter of course for our research group at the MD
Anderson Cancer Center to look for the treatment for
The results were quite interesting. We showed that
multiple myeloma in natural sources.
treatment with curcumin in combination with a
fixed dose of Bioperine was well tolerated. There
How are your studies related to myeloma?
were no significant adverse events. Of the 29 evalu-
We are studying the potential of natural products in
able myeloma patients treated so far, no objective
prevention and treatment of myeloma. The natural
responses were noted.* However, 12 patients have
product that my research group chose to focus on is
Bharat B. Aggarwal, PhD
continued treatment for more than 12 weeks and five
curcumin, which is the main biologically active phy-
University of Texas
of them have completed a full one year of treatment
tochemical derived from a plant called turmeric. In the
MD Anderson Cancer Center
with stable disease. Peripheral Blood Mononuclear
Houston, TX
Western world, curcumin is sometimes referred to as
Cell (PBMC) examination of 28 of the evaluable 29
curry powder.
patients showed that oral administration of curcumin
significantly downregulated the constitutive activation
What does curcumin do in myeloma?
of NF-B and STAT3, and suppressed COX2 expression. This study suc-
Curcumin has been described as an anti-inflammatory agent. Inflammation
cessfully demonstrated, for the first time ever, that curcumin is a highly
is an ideal target to discover therapeutics for prevention and treatment
safe agent that is bioavailable and can downregulate NF-B, STAT3, and
of cancer. Numerous genes that control tumorigenesis, the formation
COX2 in myeloma patients. This suggests a potential therapeutic role for
of tumors in the body, also control inflammation. Curcumin is a very
curcumin in myeloma that should be further investigated.
potent blocker of a
pro-inflammatory
How do you view
transcription fac-
the disconnect
tor called NF-B
between the
(nuclear factor-kap-
encouraging data
pa B). Several labo-
on curcumin
ratories, including
in the lab
ours, have shown
with its lesser
that NF-B plays a
effectiveness in
very important role
the patient?
in cancer. In myelo-
Overall,
cancer
ma, it has been
treatment requires
shown that NF-B
suppression
of
is active in promot-
multiple cell-sig-
ing myeloma cell proliferation. Curcumin suppresses the activation of
naling or survival pathways. Inhibition of single pathways is not adequate.
NF-B. Our lab demonstrated in vitro that curcumin downregulates the
Curcumin is an ideal agent to investigate for the treatment and prevention
activation of NF-B, which leads to inhibition of proliferation of myeloma
of myeloma, as it adapts multiple cell-signaling pathways, and is safe to
cell lines.
administer.
How did you proceed from that discovery?
What about further investigations of curcumin for myeloma?
We isolated myeloma cells that had been collected from patients and
Our lab has already used curcumin in vivo and in vitro with Revlimid® and
exposed them to curcumin ex vivo, and this was very effective. Our next
with VELCADE®, and we have demonstrated that Revlimid and VELCADE
step was a Phase I/II clinical trial in patients with myeloma, using 500 mg
work better when combined with curcumin.
capsules of curcumin. The objective of the trial was to evaluate the safety,
*No complete or partial responses were seen.
clinical tolerance, and biological effects of curcimin in myeloma patients
with asymptomatic, relapsed, or plateau-phase disease. Curcumin was
Editor's Note: Dr. Aggarwal is Professor of Cancer Research and
administered either alone orally at 2, 4, 6, 8, or 12 gms/day in two divided
Experimental Therapeutics, Division of Cancer Medicine, and Chief of
Cytokine Research Laboratory at the University of Texas MD Anderson
doses, or in combination with Bioperine® (a standardized extract from
Cancer Center.
800-452-CURE (2873)
11
Special Event
prof. mario BoccaDoro receives
the roBert a. kyLe Lifetime achievement awarD
ThesixthannualRobertA.Kyle thehorsestalls.Theythenpro-
Lifetime Achievement Award
ceeded into a long, impressive
was presented to Professor Mario
hall, where cocktails and hors
Boccadoro. The event was held
d'oeuvres were served and
in the town of Nichelino, just
lively conversation took place.
outside Torino, Italy, on February
After cocktails, they proceed-
6th, 2008, at the historic and beau-
ed into a truly grand "salon,"
tiful Palazzinadi Caccia Stupinigi.
whose original function was
Prof. Mario Boccadoro, Susie Novis,
Dr. Robert Kyle, and Dr. Brian G.M. Durie
A residence of the Royal House
that of a winter nursery for
of Savoy, it is one of the UNESCO
the lodge's lemon trees. The impressive room with a huge vaulted ceiling
World Heritage Sites, and was
was devoid of any furnishings except for large, red-trimmed drapes and
originally built as a royal hunt-
elegantly set tables. It made a perfect setting for this festive occasion.
ing lodge in the early eighteenth
Susie Novis and Dr. Brian
century. It was the perfect setting
Durie welcomed the guests
for a very special event.
and
acknowledged
the
Prof. Mario Boccadoro
Prof. Boccadoro is the head of
event's presenting spon-
the hematology section of the oncology division at the University of
sor, Celgene, the platinum
Torino. Prof. Boccadoro created the Italian Myeloma Study Group, the first
sponsor, Pharmion, the gold
research consortium in Italy and one of the first in Europe. He began his
sponsor, Janssen-Cilag SpA, the silver sponsor, The Binding Site, and the
career in myeloma research and treatment in 1978 as
bronze sponsor, Genentech BioOncology.
a post-doctoral fellow in Brussels, Belgium, working
Susie Novis noted what an honor it was to be able to recognize and cel-
with Prof. Benjamin Van Camp, one of the earliest
ebrate Prof. Boccadoro's many achievements in the presence of his loving
researchers in the field of myeloma. Following this,
family, his many friends, and numerous colleagues. Dr. Durie spoke about
Prof. Boccadoro was appointed assistant professor
what a privilege it has been to work with Prof. Boccadoro over the years
in the Department of Medicine and Experimental
and how their relationship grew into a close
Oncology under Prof. Alessandro Pileri, a noted
and personal friendship. Dr. Durie then had
researcher in the area of multiple myeloma.
the honor of introducing Prof. Alessandro
Dr. Robert A. Kyle In the early 1980s, Prof. Boccadoro spent two sab-
Pileri, Prof. Boccadoro's long-term mentor.
baticals as a visiting investigator at the Arizona Cancer Center in Tucson,
Prof. Pileri gave an eloquent speech about
where he worked with Prof. Brian Durie and Prof. Sydney Salmon, co-
his protégé and the importance of hav-
developers of the Durie/Salmon Staging System for myeloma. Under Prof.
ing such an outstanding myeloma team in
Boccadoro's direction, the Italian Myeloma Study Group has conducted
Torino, which grew out of their many col-
a series of pivotal clinical trials, initially involving chemotherapy, then
Prof. Mario Boccadoro &
laborations together.
Prof. Allessandro Pileri
transplantation, both autologous and allogeneic, and most recently the
Setting the stage for the climax of the evening was a video presentation
range of exciting novel agents: thalidomide, VELCADE®, and Revlimid®.
that showed the many faces of Mario Boccadoro: doctor, researcher, col-
These clinical trials, spanning over two decades, represent a remark-
laborator, loving father and devoted husband,
able collective contribution to the
dog and cat lover, motorcycle enthusiast, and
myeloma community, and have been
definitely a person with a lust for life.The
published in all the major journals,
highlight of the evening was Dr. Kyle's pre-
including The New England Journal
sentation of the award to Prof. Boccadoro.
of Medicine, Blood, and the Journal
Prof. Boccadoro gave an impassioned speech
of Clinical Oncology. Prof. Boccadoro
about the Torino myeloma team and the
is a member of numerous profes-
importance of the contributions made by
Prof. Boccadoro, his sister
sional societies both in Europe and
each member that had enabled the team to
Susie Novis &
Milena, and his mother Sara
in the United States. Since 2000 he
be so successful. He ended the
Rosella Boccadoro
has held the title of Professor and Head of the
evening by showing his own presentation, an homage to his
Hematology Section of the Oncology Division
"family" at work and his loving family at home.
at the University of Torino.
Coffee and dessert were served as the evening drew to a
Guests arriving at the event honoring Prof.
close. The guests left the event knowing that they had hon-
Boccadoro entered through the former sta-
ored a wonderful and deserving person, and experienced an
bles, where coat racks were cleverly located in
Carlotta & Simone Boccadoro
authentic notte italiana! mt
12
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.
My doctor has just prescribed
individual risk factors are: increased
Revlimid® (lenalidomide) and
age, obesity, history of blood clots, hav-
dexamethasone and I've read that
ing a central-venous catheter, prolonged
blood clots can be caused by this
inactivity (such as during a long airplane
regimen. What can I do to guard
flight), varicose veins, other diseases
against this?
(diabetes, infections, sickle cell disease,
As always, it is best to discuss this ques-
cardiac diseases), surgical procedures
tion with your own doctor. For exam-
(including vertebroplasy and kypho-
ple, prior blood clot issues or heart/
plasty) and inheritied thrombophilia
lung/vascular problems may mean that
(genetic mutations that can increase the
Revlimid/dexamethasone is not a good
likelihood of forming a blood clot). In
choice for you. If you go ahead with
addition, myeloma itself is a risk factor,
Revlimid/dexamethasone, your doctor
as is hyperviscosity (thickening of the
is in the best position to decide what
blood).
Hotline staff: Debbie Birns, Paul Hewitt, and Nancy Baxter
medications you might need to help
Aspirin alone is recommended for
prevent blood clots based upon the drugs and dosages you are receiv-
patients who have either no risk factor or only one individual/myeloma-
ing and whether or not you are at a higher risk than average for blood
related risk factor. Thus, for a majority of patients receiving Revlimid com-
clots. We can provide some general background that you can use as a
bined with low-dose dexamethasone (i.e. dexamethasone taken only one
basis for a discussion with your doctor. The IMF's International Myeloma
day each week), aspirin alone is sufficient prophylaxis.Patients who have at
Working Group has just had an article published in Leukemia (2008, vol.
least two individual/myeloma-related or therapy-related risk factors (high-
22, pp. 414-423) on the prevention of blood clots in thalidomide- and
dose dexamethasone, doxorubicin, or multi-agent chemotherapy) should
Revlimid- based therapies. You can access the full article on our website
receive LMWH or full-dose warfarin. The International Myeloma Working
www.myeloma.org. The IMF's Nurse Leadership Board has also created
Group has stated that ongoing randomized trials comparing aspirin, war-
the Consensus Statement for the Prevention of Thromboembolic Events
farin, and LMWH will soon determine the optimal prophylaxis strategy.
Associated with Novel Therapies in Patients with Multiple Myeloma, which
will shortly be published in the Clinical Journal of Oncology Nursing, and
The patient (and his or her doctor) must also keep in mind that there are
will appear on our website at that time.
side effects and risks associated with prophylaxis. Thus the doctor must
weigh your entire situation when making a decision about what type of
While the addition of both thalidomide and Revlimid to the arsenal of
prophylaxis is best for you.
anti-myeloma treatments has extended survival for patients, there are
some potential serious side effects of these treatments. Myeloma patients
Again, we caution that this is a complicated issue and that the above
treated with thalidomide or Revlimid in combination with steroids or
information is designed to provide a basis for discussing this issue with
chemotherapy have an increased risk of blood clots: venous thromboem-
your doctor. We encourage you to share the Leukemia article from the
bolisms (VTEs) or deep vein thrombosis (DVTs). Blood clots or DVTs are
International Myeloma Working Group with your doctor, as well as the
a serious condition and are potentially life threatening. DVT is a blood
IMF Nurse Leadership Board consensus statement on this issue. mt
clot in a deep vein of the lower extremities (usually occurring in the leg
or thigh, and very occasionally in the neck or upper arm). A blood clot
What do you get at an
from a DVT can break loose (embolize) and travel to the lung, causing a
IMF Patient & Family Seminar?
pulmonary embolism (PE), which is very dangerous. The symptoms of
DVT are warmth, swelling, redness and/or pain in an extremity, or dif-
·Education
·Access to Experts
ficulty breathing. Any of these symptoms should be reported immediately
Get vital, up-to-date information,
Get one-on-one access to the
including:
experts with time to ask questions
to your doctor.
· Options for front-line therapy
about your treatment options.
All patients on a regimen of thalidomide or Revlimid in combination with a
· What to do at relapse
·Camaraderie
steroid or chemotherapy should receive routine prophylaxis (medications
· What is the current role
Share your experiences and gain
strength from hearing other
taken to prevent something) in the form of a blood thinner to prevent
of transplantation
people's stories, as you become
blood clots. The choices of prophylaxis are several: aspirin (81325 mg
· Which emerging therapies
look promising
part of the IMF family.
once daily), LMWH (low molecular-weight heparin) or full-dose warfarin.
See the calendar on the back page for dates and locations of upcoming
Which drug is best for you depends upon both the regimen you are on and
seminars. To register for a seminar, please call (800) 452-CURE (2873)
whether you have any additional risk factors for blood clots. The primary
or email TheIMF@myeloma.org.
800-452-CURE (2873)
13
Nurse Leadership Board
report from 2008 nLB meeting
Page Bertolotti, RN, BSN, OCN
Cedars-Sinai Medical Center
Samuel Oschin Comprehensive Cancer Institute
Los Angeles, CA
The 2008 meeting of the IMF's Nurse Leadership with the Nurse Education Taskforce to help nurses
Board (NLB) took place on March 8th and 9th
educate patients. Patient Education Taskforce mem-
in Las Vegas, NV. This was the third general meet-
bers are participating in the IMF's Support Group
Elizabeth Bilotti, RN, MSN, APRN, BC, OCN
ing of the NLB membership. Spearheaded by IMF
Leaders Retreat in April. This will help taskforce
St. Vincent's Comprehensive Cancer Center
New York, NY
Senior Vice President Diane Moran, the NLB is com-
members to do a needs assessment in order to see
prised of 20 nursing leaders in clinical practice, and
how NLB can best help the patient community. A joint
Jacy Boesiger, RN, BSN, OCN
Mayo Clinic Scottsdale
provides an excellent forum for addressing the needs
working group will be established between patient
Scottsdale, AZ
of the nursing and patient communities. The nurs-
education taskforce members and several support
Kathleen Colson, RN, BSN, BS
es exchange information about multiple myeloma
group leaders.
Dana-Farber Cancer Institute
nursing care, identify and implement key nurse
Boston, MA
education programs, and facilitate information flow
The activity update for the NLB Publications Taskforce
Kathy Daily, RN, TSN
between the IMF, oncology nursing organizations,
was presented by Jeanne Westphal. The taskforce will
H. Lee Moffitt Cancer Center and Research
and patients. As a result of the previous NLB2 meeting
support editing, reviewing, and publishing of relevant
Tampa, FL
in 2007, four taskforce teams were created to focus on
myeloma-related documents. The current focus is on
Deborah Doss, RN, OCN
nursing education, patient education, publications,
an article on new myeloma drugs in clinical trials. The
Dana-Farber Cancer Institute
Boston, MA
and long-term care.
IMF's Myeloma Matrix was used as a starting point to
evaluate promising new agents under development
Beth Faiman, RN, MSN, CNP, AOCN
The key targets for NLB3 included identifying oppor-
that will be addressed in the publication.
Cleveland Clinic
tunities to disseminate the NLB consensus state-
Taussig Cancer Center
Cleveland, OH
ments, development of new educational materials
The Long-Term Care Plan Taskforce activity update
and tools for nurses and patients, advancing the
was presented by Elizabeth Bilotti. With the advent of
Bonnie Jenkins, RN, OCN
University of Arkansas Medical Sciences
development of the NLB's Long-Term Care Plans
novel therapeutics, the myeloma treatment paradigm
Little Rock, AR
for myeloma patients, and moving forward with a
has evolved dramatically over the last decade and, as
Kathy Lilleby, RN
new publication.
a result, patients with myeloma are living longer with
their disease. There is a greater need for managing
Fred Hutchinson Cancer Research Center
Seattle, WA
The update on NLB's side effects management con-
long-term consequences of the disease and its treat-
sensus statements was presented to the group by
ments. The taskforce is focused on educating patients
Ginger Love, RN, OCN
University of Cincinnati Hem/Onc Care
Patricia Mangan. The NLB has developed five con-
by developing statements on bone health and bone
Cincinnati, OH
sensus statements on the management of side effects
disease, functional mobility and safety, health mainte-
Patricia A. Mangan, MSN, AOCN, CRNP
associated with the novel therapeutic agents used in
nance, renal complications, sexuality and sexual dys-
University of Pennsylvania
treating multiple myeloma patients: myelosuppres-
function, and chronic pain and pain management.
Philadelphia, PA
sion, deep vein thrombosis and pulmonary embolism,
Emily McCullagh, RN, NP-C, OCN
gastrointestinal effects, peripheral neuropathy, and
Dr. Brian Durie provided a scientific update and his
Memorial Sloan-Kettering Cancer Center
steroid-related side effects. The NLB's side effects
"Best of ASH 2007" webcast. The new IMF-NLB web
New York, NY
management consensus statements will be published
portal, an initiative to enhance communication among
Teresa Miceli, RN, BSN
Mayo Medical Center
in June 2008 in the prestigious
NLB members, was introduced by Teresa Miceli. IMF
Clinical Journal of
Board of Directors member Mike Katz then presented
Rochester, MN
Oncology Nursing (CJON). The continuing education
Kena Miller, RN, MSN, FNP
(CE) accredited supplement will be disseminated at
the IMF Myeloma Manager, a new patient and caregiv-
Roswell Park Cancer Institute
IMF's 2008 Oncology Nursing Society (ONS) satellite
er tool. IMF Board of Directors member Dr. Tom Bay,
Buffalo, NY
symposium in May.
who is an experienced and inspiring public speaker,
offered speaker coaching for effective dissemination
Tiffany Richards, MS, ANP, AOCNP
MD Anderson Cancer Center
Kena Miller presented the Nursing Education
of NLB consensus statements. A very full first day at
Houston, TX
Taskforce activity update. The NLB Speakers' Bureau
NLB3 closed with remarks by Patricia Mangan.
Sandra Rome, RN, MN, AOCN
will initially focus on the NLB Consensus Statements.
Cedars-Sinai Medical Center
An updated slide presentation on the Consensus
Day two included a recap by Teresa Miceli, then
Los Angeles, CA
Statements will be used by the Speakers' Bureau, and
progressed to the Long-Term Care Plan session lead
Stacey Sandifer, RN, BSN
portions will be incorporated into the IMF-ONS satel-
by Elizabeth Bilotti. The taskforce divided into sub-
Cancer Centers of the Carolinas
lite symposium meeting in Philadelphia. The group is
groups for breakout sessions to define outlines and
Greenville, SC
also devising a plan for effectively disseminating the
deliverables, then gathered again for group reports
Lisa Smith, MSN, FNP, AOCN
consensus statements within NLB institutions and the
facilitated by the faculty.
Cancer Centers of the Carolinas
Greenville, SC
nursing community at large.
Before closing, NLB3 participants discussed the NLB
Joseph Tariman, RN, MN, ARNP-BC, OCN
Ginger Love presented the Patient Education Taskforce
key targets for 2008. We recognize and applaud the
University of Washington
activity update. Their aim is to create educational
tremendous effort and involvement of the NLB mem-
Seattle, WA
material based on the NLB consensus statements
bers. Their commitment is invaluable to the nursing
Jeanne Westphal, RN
that are user friendly educational tools for patients
community involved in myeloma care and to the
Meeker County Memorial Hospital
Litchfield, MN
and caregivers. The taskforce works cooperatively
patients they are dedicated to serving. mt
14
www.myeloma.org
Education & Awareness
cancer awareness Day
By Ian MacDonald
Iam15yearsoldandamaLifeScoutfromTroop
My dad is a volunteer firefighter with the Salisbury Mills
28 in New Windsor, NY. To complete my Eagle
firehouse, so the event received broad cooperation
rank, the highest rank in scouting, I organized a
from every firehouse in the area. In addition, I received
Blood Drive, Bone Marrow Donor Registration,
support from my extended network community of Boy
and Cancer Awareness Day. The event took place
Scouts, Girl Scouts, Cornwall High School, St. Thomas
on January 26 at the Salisbury Mills firehouse in
of Canterbury Church and youth group, and numerous
Orange County, NY.
local businesses.
The choice of my Eagle project was a direct result
The turnout was awesome. My original goal for the
of some very personal circumstances. When I
blood drive was 150 pints, but we collected 276 pints
was 4 years old, my mother was diagnosed with
of blood! In addition, over 100 people registered for the
Hodgkin's disease. In the Summer of 2007, at age
national Bone Marrow Donor Program. And many more
69, my grandfather was diagnosed with terminal
people were exposed to myeloma education. I feel very
liver cancer. Less than six weeks later, at age 50,
strongly that if people receive information about their
my father, Edward MacDonald, was diagnosed
disease early enough, it could make a significant differ-
with multiple myeloma, Stage III with meta-
Ian MacDonald and Robin Tuohy
ence in their life. Education is key. Both my dad's and my
static lytic disease. My dad's cancer diagnosis has been a complete shock
grandfather's cancers were diagnosed at advanced stages, and I can't help
to everyone.
thinking what a huge difference a proper early diagnosis might have made
for them and for my entire family.
I contacted the IMF and requested the Foundation's participation in the
mt
Cancer Awareness Day. In addition to providing information and edu-
"Ian did an outstanding job! His family and the entire
cational materials for distribution to patrons who attended the event,
community have a lot to be proud of. As a member
the Foundation also arranged for Robin Tuohy (IMF Regional Director
of the cancer community myself, I am so thankful for
Support Groups - Northeast) to attend in person to answer questions
all he has done and continues to do to help others."
about myeloma and IMF programs and services.
Robin Tuohy, IMF Regional Director Support Groups - Northeast
spotLight on aDvocacy
President Bush Includes Slight Increase for Cancer Research Funding
By Christine Murphy, MA
OnFebruary4th,PresidentBushreleasedthelastbud-
President's budget and hearing testimony from federal agencies
get of his Administration. Included in the President's
including NIH, NCI, and CDC. Congress is predicted to put
fiscal year (FY ) 2009 Budget is $29.5 billion for the
more funding into important social programs, including health
National Institutes of Health (NIH). This is the same fund-
programs. With the upcoming elections in November, the FY
ing level NIH received in FY 2008. The President's funding
2009 budget and appropriations process is expected to be con-
level is estimated to support a total of 38,257 research
tentious, as the President has vowed to veto any appropriations
project grants, including 9,757 new and competing awards
bill that includes funding levels higher than those contained in
approximately the same levels as FY 2008. The National
his budget.
Cancer Institute (NCI) received a $5 million increase to Christine K. Murphy, MA The IMF continues to monitor these issues to keep you
$4.810 billion in the President's FY 2009 budget. The IMF
Murphy Consulting LLC
informed. Please visit www.myeloma.org for updates.
supports $30.926 billion for the NIH and $5.260 billion for
mt
Arlington, VA
the NCI in FY 2009.
The Geraldine Ferraro Blood Cancer Program at the Centers for
Disease Control and Prevention (CDC) received a slight decrease to
$4.313 million in the President's budget. IMF supports $5.5 million for the
blood cancer program in FY 2009.
Additionally, the President's budget proposed a $200 billion reduction
in spending for Medicare and Medicaid over five years. In the proposal,
hospitals will bear the brunt of the Medicare cuts.
With the release of the President's budget, Congress officially begins the
FY 2009 appropriations process. Currently, Congress is combing over the
800-452-CURE (2873)
15
Education & Awareness
DiD you know?
An Important Milestone for the Myeloma Community In other words, most of the drugs that have had significant impact on
the treatment of myeloma over the past 20 years have been developed
By E. Michael D. Scott
through the use of the Orphan Drug Act. At least some of them might
In late 1982 the US Congress passed the Orphan
never have been developed if this Act hadn't been approved.
Drug Act, which was signed into law by President
Passage of the Orphan Drug Act in the USA also led to passage of similar
Ronald Reagan on January 4, 1983. This Act has been
laws in the European Union, in Australia, in Japan, and in other countries
of critical importance to the global myeloma com-
around the world, making it possible for the same drugs to be used in the
munity for a variety of reasons.
treatment of myeloma patients in a multitude of other countries too.
As some readers will know, the Act provides a mecha-
Even more importantly, many companies are still using the Orphan Drug
nism whereby organizations (commercial and non-profit) can apply for Act to develop additional new agents that have significant potential in the
certain exclusive rights in developing and bringing to market products treatment of myeloma. There are currently over 1700 drugs designated
that may be used to treat groups of patients with disorders that each affect as orphan drugs by the USA in clinical development for specific orphan
fewer than 200,000 individuals in the United States. Multiple myeloma disorders. Of course most of these drugs aren't in development for treat-
is one such disorder. Developers of so-called "orphan drugs" gain the ment of myeloma, but many are, and so we can continue to look forward
exclusive right to market a designated drug for an orphan indication for to the impact the Orphan Drug Act will be having on the management of
7 years from the date of FDA approval. During that timeframe, no other myeloma for several years to come.
manufacturer may market the same chemical or biological product for
the same clinical indication. This exclusivity provides manufacturers with It is worth noting that the National Organization for Rare Disorders
an economic "safe haven" through which they may reasonably expect to (NORD) was also established in 1983. NORD is dedicated to helping
recover their investment in drug development and earn a profit.
people with rare "orphan" diseases and assisting the organizations that
serve them. NORD is also committed to the identification, treatment, and
In the 10 years preceding the approval of the Orphan Drug Act, only 10 cure of rare disorders through programs of education, advocacy, research,
new drugs had been developed by the pharmaceutical industry for rare and service. Just as Brian Novis had a vision that led to the founding of
disorders. In the 25 years since the approval of the Act, more than 300 the IMF, so NORD's founding president, Abbey Meyers, a housewife from
new drugs have been approved for treatment of orphan diseases -- aver- Connecticut whose son needed treatment for a rare disorder, envisioned
aging more than 11 new drugs every year. Importantly for the myeloma the steps that led to the passage of the Orphan Drug Act. Abbey, the prima-
community, these drugs have included:
ry consumer advocate responsible for the Act, will be retiring as president
INTRON A® (interferon alfa), Thalomid® (thalidomide), Revlimid® of NORD this year.
(lenalidomide), VELCADE® (bortezimib), Aredia® (pamidronate), In collaboration with others, NORD has planned multiple events dur-
Zometa® (zoledronate), Procrit® (epoietin alfa), Doxil® (doxorubicin ing 2008 to celebrate the 25th anniversary of the signature of the
liposomal), Trisenox® (arsenic trioxide).
Orphan Drug Act. mt
BlueVoice.org Conducting Toxins Testing Program
First St. Louis Regional Community
Workshop a Great Success!
IMFer and myeloma patient Hardy Jones, who is the
Executive Director of BlueVoice.org, an oceanic conser-
By Kathy Cartwright
vation group he co-founded with actor and ocean activist
Ted Danson, is continuing work on a comprehensive
The IMF held a Regional Community
Workshop in downtown St. Louis on
study of the links between ocean contamination and
December 15, 2007. The venue was the Grande
cancers in marine mammals and humans. He will present
Dame of St. Louis hotels the Adams Mark
his report at the International Whaling Commission in
and it was just wonderful. Even the six inches of snow that fell the
June 2008 in Santiago, Chile. The report is an overwhelming indictment
night before didn't stop the more than 70 attendees from learning
of eating whales and dolphins, not only for moral reasons, but because
more about their disease, new treatments, side effects, and, thanks
their meat is contaminated with heavy metals and organochlorines. "We are
to Kelly Cox, a little about the IMF. The warm atmosphere, the
conducting tests of dolphin meat and the hair of people who eat dolphins
food, and most importantly, the participating patient community
in Japan," says Hardy. "Our most recent test on the meat of a bottlenose
and physicians and nurse practitioner made the day memorable.
dolphin killed at Taiji showed levels of mercury 18 times higher than the
Very special thanks to Drs. Keith Stockerl-Goldstein and Ravi Vij
maximum allowed by Japanese health officials. Our test of the hair of a Taiji
from Washington University, as well as to George Bryant, NP, from
man who eats dolphin meat showed he had 33 parts-per-million, 30 times
Siteman Cancer Center, for their presentations and answers to the
the level considered safe. A Japanese doctor recommended that this man
many questions directed their way.
be hospitalized immediately. These two facts clearly point out the danger
that eating dolphin meat poses to human consumers. While direct action
At the end of the day, besides taking home the information and
in the Antarctic is running the Japanese fleet ragged, the real end to the
IMF publications being disseminated, those who were there took
slaughter of whales and dolphins will come when it is fully exposed how
home the most important thing possible HOPE. We ended the
contaminated the meat is." Ongoing studies are evaluating the correla-
day having made new friends, so huge kudos to everyone involved.
tions between polution in aquatic mammals and humans and links to the
The event was such a success that there is talk of organizing anoth-
onset of cancers including myeloma. For more information, please visit
er St. Louis Regional Community Workshop in 2008. mt
www.bluevoice.org. mt
16
www.myeloma.org
International Affiliates
upDates from Japan & Latin america
IMF Japan
self-help and the role of patient support organizations such as the IMF for
IMF Japan experienced one of its busiest years ever in 2007. Perhaps this is
an upcoming book on the latest treatment options for myeloma, and she
fitting, since 2007 is also the year that IMF Japan celebrated its 10th anni-
has several other publications in the works. We are also continuing with
versary of service. The Foundation held an impressive roster of eight well-
our semi-annual publication Ganbarimassyoi. Research by the Japanese
attended patient and family seminars throughout Japan, including meet-
medical community on myeloma pathogenesis and treatment is gathering
ings in some of
steam and is keeping Dr. Hiroyuki Hata busy with his Aki Memorial Award
the most remote
project. And, as always, our boss, Midori Horinouchi, is making sure that
regions of the
everything is moving along smoothly."
country.
The
We hope that you will join us in wishing IMF Japan a very successful year
main 2007 annu-
in 2008.
al event, which
featured a fac-
IMF Latin America
ulty of the most
In 2007, IMF Latin America celebrated its third anniversary. The auspicious
highly regarded
occasion was celebrated by holding IMF Latin America`s first ever Gala. The
myeloma
spe-
event took place on November 13th and was called Doctors in Concert.
cialists in Japan,
Physicians from many specialty areas oncology, hematology, neurology,
IMF Japan hosts its 10th anniversary meeting panel
attracted more
surgery, orthopedics,
discussion on living with myeloma
than 300 attend-
pediatrics, etc. who
ees! In 2008, IMF Japan has already held one patient and family seminar,
also have musical talent,
and will hold five more, visiting some locations for the first time ever.
performed for the IMF.
Over 400 guests attend-
The past year also marked the submission of four formal requests to
ed, making the event a
Japan's Ministry of Health, Labor, and Welfare for early approval of key
smashing success. The
myeloma drugs and a general improvement in the availability of myeloma
evening also garnered
therapies. Japan has universal health insurance, which means that every-
significant media cover-
one has low-cost access to all drugs, treatments, and tests approved by the
Ana Maria Braga (television host and
age, including prime-
authorities. However, for many and varied reasons, all new authorizations
member of IMF Latin America's Board of
time television and
take a very long time. This gap is known as the "drug lag" problem.
Honorables), Christine Battistini, and Roberto
Civita (president of Brazil's largest publishing
major print magazines.
When it comes to new myeloma therapies, Japan's patients have access to
company and member of IMF Latin America's Doctors in Concert was
VELCADE® (bortezomib) as second-line treatment in combination with
Board of Honorables)
hosted by a well-known
dexamethasone, but there are no other novel therapies in the arsenal. No
Brazilian prime-time Evening News reporter. IMF Latin America is already
thalidomide. Revlimid® (lenalidomide) has only recently started Phase I
looking forward to marking its fouth anniversary in 2008 with another
investigation. Even VELCADE cannot be used in combination with any
Gala, and plans to make this an annual event.
agent except dex, or in newly diagnosed patients. It is such circumstances
IMF Latin America's 2007 Symposium for Nurses was held during the
that made the 2007 appeals to the Ministry so essential.
Brazilian Society of Hematology Annual Meeting. More than 200 nurses
In 2008, IMF Japan will continue to focus on lobbying for approval of
attended this important symposium, and there is clear demand to make
the novel therapies that are already available in the US and elsewhere.
this educational forum available on an annual basis. As part of its educa-
They will join forces with other patient organizations in a call for action
tion programs, IMF Latin America has hosted 11 patient and family semi-
addressed to the national government and to entities involved in drug
nars in its first three years. For 2008, five patient
development and authorization. IMF Japan's Daisuke Nakao has already
and family seminars are planned in Brazil, one in
been interviewed by a major Japanese daily newspaper and a US-based
Argentina, and one in Mexico, bringing the total
newswire, and has received several requests for manuscripts on this topic.
number of IMF Latin America patient and fam-
Another issue that IMF Japan is tackling is the serious shortage of doc-
ily seminars to 18 by year's end. In addition, IMF
tors with myeloma experience, so staffers are identifying and cultivating
Latin America has sent out approximately 15,000
hematologists willing to take on myeloma patients and to participate in
educational InfoKits.
patient seminars.
We would like to extend our thanks and con-
IMF Japan is run by a small core of dedicated volunteers. "We recognize
gratulations to Christine Jerez Tel es Battistini
that at this time we cannot physically reach everyone who can benefit from
(President, IMF Latin America), Abílio Gunutzmann
the help we can offer," says Daisuke Nakao. "So, we are putting extra effort
Filho (Director, IMF Latin America), the members
Christine Battistini
into upgrading our publication base. We recently updated our translation
of the IMF Latin America Scientific Advisory Board,
being interview
of the IMF Patient Handbook, and we are keeping our translation team
the Board of Honorables, and the dedicated staff
by TV program
Estilo Ramy
very busy with other projects. Kyoko Joko has written a chapter on patient
for all their impressive accomplishments. mt
800-452-CURE (2873)
17
Support Group Profiles
east texas myeLoma support group
Donna LaRocque's husband, Roger, was diagnosed with multiple for patients, family members, and health-care professionals interested
myeloma in the spring of 2005. Like many other couples facing
in learning more about myeloma, the event featured presentations from
this diagnosis, they felt alone. "There
medical professionals and from people living with the disease. One-on-
were other types of support groups
one access to myeloma experts gave many community members an oppor-
in the East Texas area, but nothing for
tunity to ask questions about their treatment options, and a welcoming
multiple myeloma patients or their
environment created a comfortable space to share personal experiences.
families," says Donna. "People deal-
ing with many other types of cancer
Doctors on the faculty addressed the topics of myeloma therapies, kypho-
can't relate to us. There are cures for
plasty and vertebroplasty, opiate pain management for compression frac-
Donna and Roger LaRocque
some other hematological malignancies, but not for multiple myeloma.
tures, and the ever-popular "Myeloma 101," which was of particular inter-
Myeloma is uniquely challenging."
est to the newly diagnosed and their caregivers. Other presenters included
IMF's Andy Lebkuecher, representatives from the North Texas Myeloma
The East Texas Myeloma Support Group invites you not to take the myelo-
Support Group, and Bonnie Jenkins, oncology nurse extraordinaire from
ma journey by yourself, but to come join them for mutual support and
the Myeloma Institute at the University of Arkansas at Little Rock.
education. The group's logo is an open book with the motto, "Learning
Together," which is an accurate description of its mission and activities.
The East Texas Myeloma Support Group always welcomes new members.
This group meets in Gladewater on the second Saturday of each month
On October 20, 2007, the East Texas Myeloma Support Group co-spon-
from 11am to 1pm. For more information please contact Donna LaRocque
sored the "Understanding Myeloma" symposium with the IMF. Designed
at 903-845-6711, Joe and Millie Denton at 903-858-2332, or Ed and Carolyn
Evans at 903-839-4653, or visit http://easttexas.myeloma.org. mt
Photos:
Top row, far left: Andy Lebkuecher and Loul Biru.
Check-in table: Ed & Carolyn Evans with Georgia Herndon standing.
Top row, far right: speaker Dr. Gary Gross.
Lower row, far left: Jim & Nancy Ver Shaw, friends of the family,
and Bonnie Jenkins from Little Rock.
Lower row, second from left: speaker Dr. Lee Griffith.
Lower row, third from left: speaker Dr. Frank Ward.
Lower row, far right: Yelak Biru, Dr. Frank Ward,
Andy Lebkuecher, Dr. Carolyn Harvey, Dr. Gary
Gross and Bonnie Jenkins.
tampa/ st. petersBurg myeLoma support group
When Carolyn and Frank Kaiser attended the IMF Patient & Family
Seminar in Tampa/St. Petersburg, Florida, in November 2007, they
did not know what to expect. Newly faced with Carolyn's myeloma diag-
nosis, they sought out information, education, and support wherever they
could find it. Frank had even attended a caregiver's meeting at a local
facility but did not find it very helpful. "Myeloma is such an unusual and
complex disease that generic cancer information just does not apply," said
Frank. "The IMF meeting helped us to begin to answer some of our ques-
tions, and gave us a sense of community and camaraderie."
Carolyn Kaiser, Jim Barth, Frank Kaiser, and Marti Hill
type of services that a support group can provide to the local community,
Carolyn and Frank volunteered to work on starting a support group in
meeting structure, booking guest speakers, and handling a variety of
their area, along with Marti Hill and Jim Barth. Marti was diagnosed in
patient and caregiver needs."
January 2004, following a year of being misdiagnosed with a rheumatoid
condition. After unsuccessful treatment with thalidomide and dexametha-
In less than a month, the new Tampa/St. Petersburg Myeloma Support
sone, she had an autologous transplant, which helped her achieve a two-
Group was actively moving towards its first public meeting. Carolyn
and-a-half year remission before relapse. Jim was diagnosed with Stage 2
had distributed hundreds of flyers publicizing the group and its inau-
myeloma in 2006 in the course of an annual physical, and is currently not
gural meeting, and her fellow group leaders canvassed local physicians
receiving treatment.
and nurses. The group's first meeting was held successfully on March
15th, and the second meeting has been scheduled for April 19th. Andy
IMF's Andy Lebkuecher visited Florida to meet with the group as they
Lebkuecher plans to attend once again and invites you to do the same. For
planned their first meeting. The planning get-together was set up by Marti
more information, please contact Marti Hill at m23rose@gmail.com or
at a local restaurant. "The meeting was extremely productive," says Andy.
727-953-6527, or contact Carolyn and Frank Kaiser at cskaiser@mac.com
"We discussed strategies on how to get a new group off the ground, the
or 727-726-0066. mt
18
www.myeloma.org
Patient & Caregiver Experience
my many miracLes
By Christine McClay
My husband, Robert, and I were mar-
We had one last shot and, in May, trans-
ried in 1996. Two years later we
ferred the remaining three embryos. To
arrived at the decision that we were ready
everyone's amazement, eight weeks later,
to start a family. I got pregnant. And that's
we had three strong heartbeats. It's got
when all hell broke loose.
to be very hard to carry someone else's
babies and triplets at that! but our
The 20-week ultrasound showed that our
carrier was able to get them to 29-and-a-
baby boy did not have a brain, and the preg-
half weeks. Our girls spent 5-and-a-half
nancy had to be terminated. Shortly there-
weeks in the neonatal intensive care unit
after I started having what we thought was
and came home while still significantly
severe sciatica pain. Our doctors thought
short of their original due date. Each of
that the pain was pregnancy-related, and
them had slight medical problems, but
they prescribed a lot of pain-killers and
all of these were resolved over time. Our
muscle-relaxants. But the pain did not get
church family was here to hold, swaddle,
better. In fact, it got so excruciating that
The McClay Family
and cuddle the girls from 9am to 9pm
soon I could no longer sit or lie down in
every day, and the triplets thrived. Now Keely, Jenna, and Erin are healthy,
comfort. An MRI scan was performed. It revealed Stage 3 myeloma, with
happy, active three-year-olds. And Aidan is a wonderful big brother.
a lesion on my sacrum at the bottom of the spine impinging upon the
sciatic nerve. It became clear that if I had carried my little boy to term, my
Currently, I am experiencing a myeloma relapse, but that is just part of
myeloma would not have been discovered in time. So I like to think that
the challenge of living with this disease. After my transplant, I went on
he gave his life for mine.
interferon in hopes of prolonging the remission, which lasted about a
year and a half. In 2002, I took thalidomide for about nine months before
I was 33, and suddenly facing coming to the end of my life within three
my IgG reached normal levels. In 2004, I had a pulmonary embolism that,
to five years. My husband and I desperately needed to absorb and process
thankfully, was caught in time. In 2005, I was back on thalidomide and,
what all of this meant. We were made aware that the radiation I was about
once again, achieved remission. In May 2006, while my IgG tested within
to undergo part of the chemotherapy, radiation, and transplant treat-
normal range, I developed a lesion on my rib. It was then that we learned
ment plan would destroy my fertility. We talked to the doctors about our
that I had become a non-secretor. Apparently, this can happen as a result
options to have children, and got started towards an egg retrieval process
of thalidomide therapy. After two weeks of radiation, I started Revlimid®
the very next morning. The fertilized eggs were frozen to wait for a better
(lenalidomide) therapy. In October of 2007, I relapsed once more. I am
day, and I moved on with my myeloma therapy.
dealing with a series of broken ribs and am now on combination therapy
During my first year of treatment, I felt like I was having an out-of-body
consisting of VELCADE® (bortezomib) and DOXIL® (doxorubicin Hcl).
experience. It was a very difficult time, but my husband would never let
Our goal is to shrink the tumor burden enough to do a mini-allo trans-
me get down or focus on the negative. Neither of us has any family living
plant using my brother's bone marrow, as he is an exact HLA match.
nearby, so we got through those early myeloma days thanks to the broad
There have been times when this disease brought me to my knees, but my
network of local support that began to emerge. We had to learn to rely
husband and our support network have always lifted me up. I am a para-
on others. Our church came to our aid with meals and healing services,
legal for a pharmaceutical company. I had also been in the Army Reserves
and our neighbors and coworkers offered their assistance when we
as a Russian linguist for 12-and-a-half years. But the chemo did such a
needed it most.
number on me that I found I could no longer keep up mentally with
Then somehow we got word that there was going to be a convention
the demands of military intelligence work, not to mention the physical
in our area for couples who are infertile. As I was still dealing with the
rigors of training, so I got a medical discharge. Recently, I became a sales
aftereffects of a transplant, I was not able to attend, but my husband went.
director for Mary Kay Cosmetics, and a new group of friends entered my
He met a lawyer who specializes in surrogacy and adoption, and told him
life. Unbeknownst to me, when I was unable to work while dealing with
about our situation. In the Spring of 2000, when I finally recovered from
the most recent relapse, they collected enough money to help us pay our
my transplant, we called the lawyer. By the end of the year, we had found
mortgage this past December. Once more, friends came to our aid and,
our gestational carrier. We cashed in the stock options my husband had
once again, it overwhelmed me to know that people wanted to help.
received as part of his company's compensation plan in order to finance
I marvel that here I am, almost nine years after my diagnosis. Some morn-
the surrogacy. We like to think that no one has ever received a better
ings, just getting out of bed is tough, but I work at remaining positive
return on any stock. Our son Aidan was born on his due date in 2001.
and optimistic. I operate on an attitude of gratitude, and am thankful for
He was perfect.
everything. Myeloma has given me a new window on life. It taught me to
When Aidan was about a year and a half, we decided it was time to give him
be humble, that I don't control everything, that it's okay to accept help
a brother or a sister. Aidans' gestational carrier was no longer available, so
from others, and that there is much goodness in people and much beauty
we had to start the search process all over again. In early 2004, we found
in life. I have chosen to live with myeloma as if it is already just a chronic
another woman and did an embryo transfer in March. Nothing happened.
disease, and I intend to be here for my children and grandchildren. mt
800-452-CURE (2873)
19
Member Events
imfers raise funDs to Benefit myeLoma community
By Suzanne Battaglia
Jammin' For A Cause
Mailing For A Cure
The Twin Cities Myeloma Foundation was born out of the local Twin Cities
Matt Jacobs has battled multiple myeloma for over three years. "If this
Area Multiple Myeloma Support Group about five years ago. The sup-
were a boxing match, we would be in the sixth round of a 15-round fight.
port group was providing an
And so far, it is a draw," says Matt. "Over the past year, I have been knocked
essential service but wanted
to the mat, but when it looked like I was not going to beat the 10-count,
to figure out a way to finance
a new drug protocol became available that put me into an eight-month
their meeting expenses, spon-
remission. And, although I am
sor projects designed to raise
back in treatment again, I'm con-
myeloma awareness, and con-
vinced that I'll be OK."
tribute in a significant way
In a December 2007 letter,
to myeloma research. Three
Matt asked his friends and fam-
years ago, Donna Costello
ily to donate to the International
and Pat Harwood, who run
Myeloma Foundation during the
the Twin Cities Myeloma
Donna Costello, Famous Dave,
holiday season, and they respond-
Foundation, organized their
and Pat Harwood
Phyllis & Matt Jacobs
ed with great enthusiasm. In addi-
first fundraiser, a sit-down dinner for patients and their network of sup-
tion to raising funds for myeloma research and other IMF programs, this
porters. The evening also featured presentations by myeloma experts, and
type of fundraising also allows its organizer to be proactive in creating
the event was a huge success, attracting more than 300 people. The pro-
public awareness about the disease while sending cards and letters, some-
ceeds from that event enabled the funding of a research grant for a project
thing most of us do anyway on many holiday occasions. Hats off to Matt
being conducted by the Mayo Clinic in Rochester, MN. In April of 2007,
for a job well done!
the Twin Cities Myeloma
Foundation hosted their
Join Us
second fundraising event,
We are grateful to all IMFers who contribute their time, imagination, and
which was also a big suc-
hard work to benefit the myeloma community. The IMF is committed to
cess.
working with you to continue to raise awareness and funding for myeloma
In August of 2007, a
education and research. Join us in working together toward our common
local philanthropist, Tom
goal... a CURE. Our FUNdraising program provides you with the tools,
Ryan, offered the group
assistance, and expertise to make your event a success. No idea is too
Pat Harwood and Donna Costello with event an opportunity to hold an
large or too small. Please contact me, Suzanne Battaglia, at sbattaglia@
volunteers Laura & Jeff Schuerman
event on November 20th
myeloma.org or 800-452-CURE (2873).
at Elko Speedway, a well-known local attraction. Donna and Pat are both
myeloma patients and, having already organized one big fundraiser in
UPCOMING MEMBER EVENTS
2007, they found the thought of a second large event in the same calendar
year somewhat daunting. "But we decided to move forward with the Elko
April 15, 2008 "Spirit of 76" Lewisville, TX
Contact: Jim Conrad, 972-317-8798
event anyway," says Donna. "We received support and sponsorship from
two pharmaceutical companies, Celgene and Millennium, and a local
April 24, 2008 "Music Against Myeloma" New York, NY
restaurant, Famous Dave's of Linden Hills. The IMF was also very helpful
Contact: Slava Rubin, 312-804-3076 or slavarubin@gmail.com
in getting the project going, and Kelly Cox and Suzanne Battaglia both
April 27, 2008 "A Song For Ireland" Philadelphia, PA
attended the evening to lend their support."
Contact: Doug Farrell, 215-870-5189
May 4, 2008 "Afternoon Tea" Washington DC
The event was called "Jammin' For A Cause," as the featured attraction
Contact: Carol Klein, carol60klein@verizon.net, or
was a performance by the Johnny Holm Band, very popular local musi-
Nancy Moses, nancykmoses@aol.com
cians who draw big crowds to their concerts. Unlike previous Twin Cities
May 17, 2008 "JC Golf Tournament" St. Cloud, MN
Myeloma Foundation events, Jammin' For A Cause drew a wide audience
Contact: David Johnson, 952-546-6000 or Djohnson@borkonlaw.com
composed of people already familiar with myeloma and also those not
June 21, 2008 "Schirinzi Golf Tournament" Prato, Italy
peviously aware of it. Thus, there was a significant opportunity to spread
Contact: Vittorio Schirinzi, vschirinzi@tin.it
the word about myeloma to a larger community. The event was attended
July 13, 2008
by 800 people and, besides the musical performance, it included a live
"Multiple Musicians Against Multiple Myeloma" Great Neck, NY
auction, a raffle with some very nice offerings, a martini bar, and a dinner
Contact: Naomi-Margolin, 516-487-6712 or Nmargolin@aol.com
of ribs, corn, baked beans, and cornbread. Funds raised by Jammin' For A
July 19, 2008 "Naperville Golf Tournament" Naperville, IL
Cause will be used to support the IMF's Bank On A Cure® research initia-
Contact: Craig Czerkies, 630-721-0557 or czak16@aol.com
tive at the University of Minnesota.
20
www.myeloma.org
Investing in the Future
MyeloMa Today in conversation with DaviD Brown
"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.
When were you first diagnosed?
achieve remission. The next therapeutic approach
During a routine physical in 1998, blood tests revealed
involved several months of thalidomide and dex-
irregularities in my blood chemistry. The oncologist I
amethasone. Next came an autologous transplant,
was referred to diagnosed me with MGUS (monoclo-
which was performed at Mayo Clinic in July 2003.
nal gammopathy of undetermined significance). There
I relapsed after an 18- month remission.
were no symptoms, but the doctor was pessimistic
In late 2006 my oncologist at Mayo Clinic, Dr. Craig
about my prognosis. That was what led me to do my
Reeder, started me on Revlimid® (lenalidomide)
own research, to connect with the IMF, and to seek a
and dexamethasone. Unfortunately, in my case,
second opinion from Dr. Brian Durie, who had been
Revlimid did not bring the disease into remission.
highly recommended in the field of multiple myeloma.
In August 2007, also at Mayo Clinic, a second trans-
At the time I lived in San Jose, California. Dr. Durie
plant was performed. The lambda light chain num-
agreed to accept me as a patient and monitor the
bers remained normal until the end of February
disease. He is an excellent physician, a terrific person,
2008, when they began to rise slightly.
and has since become a good friend.
The problem with this disease is not just the
What were the circumstances in your life at that
myeloma itself, but all the peripheral medical
time?
David Brown
issues that have happened along the way. I have
I have three grown daughters and 11 grandchildren. By 1998, I was in a
had major sinus disease, which involved two surgeries. As a result of
second marriage, with a two-year-old son. In June 1999 we moved full-
numerous cases of pneumonia, I developed infections in the pleura of my
time from Silicon Valley to Pagosa Springs, Colorado. The initial diagnosis
right lung, which required a thoracotomy. Recovery from the operation
was an emotional blow to my entire family, but we learned to accept it
took almost a year.
over time. My March 2001 checkup confirmed that my condition still did
Myeloma has had a profound impact on my life. Of the last seven years, I
not require treatment, as no symptoms had emerged. In June 2001, my
have probably had only about 18 months when I wasn't actively dealing
wife and I had our second son.
with some aspect of this disease. Because of my chronic leg and back pain,
When did you convert from MGUS to active myeloma?
I have had to cope with my inability to do physical things with my two
The day before 9/11, I started to experience some pain in my right femur
young sons. Our experience with myeloma has been challenging, both
while I was exercising on the treadmill. The pain continued to get worse,
physically and emotionally, but it is now part of our lives. We have adapted
and by Thanksgiving I was on crutches. During that same time I was
and are doing well. Every day is a new day and we are learning to take one
experiencing significant chronic pain caused by degenerative disc disease
day at a time and to be grateful for our many blessings.
that has subsequently required six different operative procedures. In the
What has been most helpful to you along the way?
late fall of 2001 I went to Mayo Clinic in Scottsdale, Arizona, to obtain
Without the support of my family and my strong Christian faith, I do not
opinions on the leg and back pain. While at Mayo, scans revealed that I
know that I could have survived this experience. My faith has grown dur-
had an in-place fracture to my femur and that the MGUS had progressed
ing this trying period. I am learning to trust in the Lord, to wait on the
to multiple myeloma, which was the cause of the fracture. During this
Lord, and to hope in the Lord. It is also very essential to have the support
time I was still under the care of Dr. Durie, who recommended immediate
of others friends, other myeloma patients, and doctors. I have sought
radiation of the right femur to kill off the myeloma. I returned to Colorado
out the best myeloma doctors I could find. I have become close friends
for the treatment.
with them. My relationship with Susie Novis and the IMF has also been
Please tell us about your experience with myeloma.
very important. I certainly recommend that other members of the myelo-
While at home in December 2001, I had a fall that fractured my leg. After
ma patient community reach out to the IMF and learn about all available
four hours I ended up in the emergency room in Durango, Colorado, an
support services. Myeloma can be a lonely and scary disease, and it helps
hour and a half drive from where we live. The leg was reset and a rod was
to have others to talk with about it. As a result of my disease I am able to
implanted in the hip. After being released from the hospital, I received
offer support by sharing my experiences.
more radiation therapy. During the next nine months we waited for the
Why have you chosen to support the IMF and myeloma research?
bone to regraft, which did not occur. In January 2003, I underwent surgery
I am a benefactor both to the IMF and to the Mayo Clinic. The IMF is a
at Mayo to have a titanium prosthesis installed to replace the damaged
wonderful organization that provides a key support system for myeloma
bone. The prosthesis connects with my femur and goes over the knee into
patients and their families. I helped provide seed funding for the IMF's
the tibia. The recovery from this surgery was quite lengthy. I started on
Bank On A Cure® research initiative. Being a visionary in my business
chemotherapy (Cytoxan®). There was some improvement, but I did not
Continues on next Page
800-452-CURE (2873)
21
INVESTING IN THE FUTURE -- continued from page 21
life, I decided to invest in what at the time was a novel idea. The decision
was made largely from knowing Susie Novis and Dr. Brian Durie and the
caliber of the people around them. My interest is in funding research that
aims to mitigate this disease and to find a cure for it. I was confident from
the beginning that Bank On A Cure would ultimately be successful.
The myeloma scientific community has come a long way since my initial
1998 diagnosis. After being given a prognosis of a 5-year survival, I am
now in my 10th year. My current treatment options include novel agents
that were simply not available a few years ago, and more new products are
Put your old cell phone to good use!
being developed every day. mt
Donate your old cell phone and become part of finding the cure.
The IMF has partnered with a cell phone recycling organization
Planned Giving
that makes a donation for every cell phone we turn in. Current cell
There are many ways to support the IMF. It is important that you find the
phone models are worth up to $20 each. Many older models are
approach that best meets your needs and fulfills your wishes. In order
worth $1 to $10.
to help start the thought process for your gift planning, we suggest the
You can help the IMF continue its research and programs. You can
following forms of giving:
help our environment. You can provide cell phones to underserved
· Bequests in your Will or Trust
· Annuity Trusts
communities. And it's as easy as sending us your old cell phones.
· Gifts of Securities (Stocks)
· Unitrusts
For more information about how to turn your old cell phone into
· Gifts of Real Estate
· Term-of-year Trusts
a contribution (or how to set up an IMF collection program at your
· Charitable Lead or Remainder Trusts
· Gifts of Life Insurance
business or school), call Kemo Lee at at 800-452-CURE (2873).
Estate and gift planning requires thoughtful consideration and discussion.
To learn more about any of the suggestions listed above, or other forms
Or, you can mail your phones direct to the IMF:
of giving that might inspire you, please contact Heather Cooper-Ortner
International Myeloma Foundation
at 800-452-CURE (2873) or hortner@myeloma.org. We also invite you to
c /o Cell Phones for a Cure
visit our website at www.myeloma.org for a more detailed explanation of
12650 Riverside Drive, Suite 206
these giving plans.
North Hollywood, CA 91607-3421.
2008 IMF Calendar of Events
April 17 19
IMF Scientific Advisory Board Retreat BeRMudA
June 27 28
IMF Patient & Family Seminar Seat le, WA
April 25 26
IMF Patient & Family Seminar Vienna, AuSTRIA
June 27 29
eastern Cooperative Oncology Group (eCOG) meeting Boston, MA
April 30 May 4 Southwest Oncology Group (SWOG) meeting Atlanta, GA
July 25 26
IMF Patient & Family Seminar Boston, MA
May 15 18
Oncology Nursing Society (ONS) Philadelphia, PA
August 8 9
IMF Patient & Family Seminar Short Hil s, NJ
May 28
Regional Community Workshop for Physicians Barcelona, SPAIN
August 22 23 IMF Patient & Family Seminar San diego, CA
May 30 June 3 American Society of Clinical Oncology (ASCO) meeting Chicago, IL
Sept 18 19
Biennial 5th Annual International Symposium on Clinical
May 31
IMF Patient & Family Seminar Valencia, SPAIN
Applications of Serum Free Light Chain Analysis Bath, uK
June 2
Regional Community Workshop for Patients/Physicians
October 10
IMF Patient & Family Seminar Paris, FRANCe
Pamplona, SPAIN
October 17
IMF Patient & Family Seminar Rome, Italy
June 12 15
european Hematology Association (eHA) meeting
Oct 29 Nov 2 Southwest Oncology Group (SWOG) meeting Chicago, IL
Copenhagen, deNMARK
Nov 14 16
eastern Cooperative Oncology Group (eCOG) meeting
June 25
Regional Community Workshop ulm, GeRMANY
Ft. Lauderdale, FL
June 26
Regional Community Workshop Stut gard, GeRMANY
dec 6 9
American Society of Hematology (ASH) meeting San Francisco, CA
Other events/meetings wil be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or cal 800-452-CURE (2873).
IMFLatin America, IMFJapan and IMFIsrael events are not included above.
Imagine Moving Forward
We speak your language
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International Myeloma Foundation
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Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
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