Myeloma
Today WINTER2006
Volume 7 Number 1
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
In this issue...
Scientific & Clinical
Profiles in the News
Special Event
REPORT FROM ASH
SCIENTIFIC ADVISOR PROFILE
A
report
on
IMF's
Read about some of the most
Myeloma Today interviews
16th Anniversary Gala,
significant myeloma-related
Dr. Brian G.M. Durie about
honoring BOAC and
news from the 48th annual
his background and interest
Jerome Zeldis. PAGE 19
meeting of the American
in myeloma, as well as his
Society of Hematology (ASH).
involvements with the found-
Information includes updates
ing and growth of the IMF. Dr.
Also in this issue...
on Revlimid®, VELCADE®, and IMF's Bank On A
Durie also shares his outlook
Cure® research initiative. PAGE 6
for the future of the myeloma
Dear Reader Susie Novis' letter. PAGE 3
Myeloma Today discusses
community. PAGE 5
anemia with Prof. Heinz
Letters from our readers. PAGE 3
Ludwig. Learn about this com-
BOARD OF DIRECTORS PROFILE
2006 Lymphoma & Myeloma Conference report.
mon complication of myeloma
Myeloma Today interviews
PAGE 10
and why you may be at risk. A
Richard Saletan about his life
range of strategies for combat-
with myeloma, his work with the
Member Events Read about IMFers who have
ing anemia in myeloma are
IMF and its Board's Executive
chosen to make a difference by taking action
discussed. PAGE 7
Committee, his outlook for the
on behalf of the members of the myeloma com-
future of the Foundation, and
The recipients of the 2007 IMF Research Grant
munity. PAGE 13
awards were announced at the gathering of
his hopes for the myeloma com-
International Affiliates Updates from around
the Foundation's Scientific Advisors, held at the
munity. PAGE 4
the globe include news from out affiliates in
annual meeting of the ASH. Learn about the
INVESTING IN THE FUTURE
research projects funded by your generous dona-
Germany, Canada, and Japan. PAGE 15
tions.
This new section features
PAGE 9
profiles of IMFers who are
Support Groups Hear about local myeloma
The first meeting of the
making profound investments
communities in Rhode Island and Tennessee.
Nursing Leadership Board
in the myeloma community
PAGE 17
(NLB) took place November
and the path to a cure. Read
Calendar
45, in Dallas, Texas. Read
of seminars, symposia, and myeloma
about this groundbreaking
about how and why Gary &
events around the world. BACK COVER
retreat, which focused on
Louise Takata have chosen to
News & Notes important news bits and late-
novel therapies for myeloma. PAGE 11
commit so significantly to the fight against
myeloma. PAGE 21
breaking information. BACK COVER
SUPPORTIVE CARE
Myeloma
Today
discusses
PATIENT PROFILE
Looking for a LocaL
nutritional and lifestyle influences
This issue's patient profile focuses on the
on myeloma with Dr. Loch
myeLoma
life experiences of Dr. Wil iam Wheeler Jr.
Chandler, a naturopathic doctor
support group?
and how his 20
and a licensed acupuncturist.
years of travel in
Learn about integrative medicine and how it may
If you are interested in joining an
help you during cancer therapy.
Africa's prepared
PAGE 13
existing group please access the
him
to
cope
website at www.myeloma.org
IMF's Hotline Coordinators explain how
with his myelo-
kyphoplasty can help patients who have pain
"Finding Support"
ma
diagnosis.
that does not respond to bed rest, pain medica-
PAGE 18
or call the IMF
tions, or back braces, and is caused by fractures
at 800-452-CURE (2873).
in the vertebrae. PAGE 14
This issue of Myeloma Today is supported by Celgene Corporation and Mil ennium Pharmaceuticals.
International Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Benson Klein
Dr. Edith Mitchell
Susie Novis
E. Michael D. Scott
Michael B. Bell
Dr. Robert A. Kyle
Dr. Gregory R. Mundy
Matthew Robinson
R. Michael Shaw (ex officio)
Mark DiCicilia
Isabelle Lousada
Charles Newman
Richard H. Saletan
Igor Sill
Michael S. Katz
Allan Weinstein
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Daniel Bergsagel, CANADA
Ian Franklin, SCOTLAND
Ian MacLennan, ENGLAND
Y.C. Chen, REPUBLIC OF CHINA
Tadamitsu Kishimoto, JAPAN
James S. Malpas, ENGLAND
Scientific Advisors
Raymond Alexanian, USA
Rafael Fonseca, USA
Linda Pilarski, CANADA
Kenneth C. Anderson, USA
Gösta Gahrton, SWEDEN
Raymond Powles, ENGLAND
Michel Attal, FRANCE
Morie A. Gertz, USA
S. Vincent Rajkumar, USA
Hervé Avet-Loiseau, FRANCE
John Gibson, AUSTRALIA
Paul Richardson, USA
Dalsu Baris, USA
Hartmut Goldschmidt, GERMANY
Angelina Rodríguez Morales, VENEZUELA
Bart Barlogie, USA
Jean-Luc Harousseau, FRANCE
Donna Reece, CANADA
Régis Bataille, FRANCE
Joyce Ho, AUSTRALIA
David Roodman, USA
Meral Beksac, TURKEY
Vania Hungria, BRAZIL
Jesús San Miguel, SPAIN
William Bensinger, USA
Sundar Jagannath, USA
Orhan Sezer, GERMANY
James R. Berenson, USA
Douglas Joshua, AUSTRALIA
Kazuyuki Shimizu, JAPAN
Leif Bergsagel, USA
Michio M. Kawano, JAPAN
Chaim Shustik, CANADA
Joan Bladé, SPAIN
Henk M. Lokhorst, THE NETHERLANDS
David Siegel, USA
Mario Boccadoro, ITALY
Heinz Ludwig, AUSTRIA
Seema Singhal, USA
J. Anthony Child, ENGLAND
Jayesh Mehta, USA
Alan Solomon, USA
Raymond L. Comenzo, USA
Håkan Mellstedt, SWEDEN
Pieter Sonneveld, THE NETHERLANDS
John Crowley, USA
Giampaolo Merlini, ITALY
Andrew Spencer, AUSTRALIA
Franco Dammacco, ITALY
Gareth Morgan, ENGLAND
A. Keith Stewart, USA
Faith Davies, ENGLAND
Gregory R. Mundy, USA
Guido J. Tricot, USA
Meletios A. Dimopoulos, GREECE
Amara Nouel, VENEZUELA
Benjamin Van Camp, BELGIUM
Brian G.M. Durie, USA
Martin M. Oken, USA
Brian Van Ness, USA
Hermann Einsele, GERMANY
Antonio Palumbo, ITALY
David Vesole, USA
Dorotea Fantl, ARGENTINA
Jan Westin, SWEDEN
Headquarters
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607-3421 U.S.A.
Tel: 818-487-7455 or 800-452-CURE (2873)
Fax: 818-487-7454 E-mail: TheIMF@myeloma.org Website: www.myeloma.org
IMF Staff
Senior Vice President, Strategic Planning
Vice President, Member Services
Vice President, Operations
Diane Moran (dmoran@myeloma.org)
Kelly Cox (kcox@myeloma.org)
David Smith (dsmith@myeloma.org)
Development Associate
Publications Editor
Database & Inventory Control
Suzanne Battaglia (sbattaglia@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
Macky Lee (mlee@myeloma.org)
Hotline Coordinator
Executive Assistant
Associate Director, Development
Nancy Baxter (nbaxter@myeloma.org)
Nancy Kennedy (nkennedy@myeloma.org)
Candace McDonald (cmcdonald@myeloma.org)
Hotline Coordinator
Publication Design
Debbie Birns (dbirns@myeloma.org)
Development Assistant
Missy Klepetar (mklepetar@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Director, IMF Europe
Director, Medical Meetings & CME Programs
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Regional Director, Support Groups Southeast
Lisa Paik (lpaik@myeloma.org)
Hotline Coordinator
Andrew Lebkuecher (imfsupport@charter.net)
Webmaster
Paul Hewitt (phewitt@myeloma.org)
Specialty Member Services Coordinator
Abbie Rich (arich@myeloma.org)
Meeting & Event Services
Kemo Lee (klee@myeloma.org)
Regional Director, Support Groups Northeast
Spencer Howard (showard@myeloma.org)
Robin Tuohy (tuohy@snet.net)
www.myeloma.org
P
Internationallaceholder
Myeloma Foundation
Dear Reader,
and supporting the identification and implementation of
key nursing educational programs.
Winter is typically a time when everything goes into a
deep slumber. But not the IMF! We've never been busier.
The IMF's Bank On A Cure® team was equally busy
This past year was a monumental year for us as we added
developing custom SNP chips. They researched over half
key members to our team. Diane Moran, most recently
a million genetic variations that can affect cancer and
with Millennium Pharmaceuticals, came to us after a
targeted 3,400 genes that specifically influence myeloma.
22-year career in the pharmaceutical industry and has
And at ASH the important advances that were present-
helped the IMF realize new programs that help broaden
ed included the discovery of specific genes that iden-
our reach to patients, caregivers, and the medical com-
tify patients at highest risk for developing DVT's with
munity. Greg Brozeit took on a new role, becoming the
thalidomide and/or Revlimid therapy, as well as genetic
IMF's European Director. He has spent the past year
correlations with different type of myeloma disease pat-
participating in numerous seminars in Europe, meeting with doctors and
terns. These findings will be in the next issue of Myeloma Today
support group leaders, and launching the Myelom Merkur, a German
and will be available on our web site, but as we go to print, this
version of the Myeloma Minute.
information is still embargoed.
The IMF added 20 new publications to our already extensive library,
Our Support Group team, Kelly Cox,
including translations into French, German, Italian, and Spanish to provide
Robin Tuohy, and Andy Lebkuecher,
our members in other countries with access to information on treatment
crisscrossed the country visiting with
advances. The IMF also launched the Mensajero, a Spanish edition of the
groups from coast to coast, providing
Myeloma Minute. IMF Latin America and IMF Israel also were extremely
them with materials, information, and
busy, putting on seminars, meeting with patients, updating their websites,
a helping hand when needed. Four
and translating publications into Portuguese and Hebrew.
extremely successful conference calls
were held with the Support Group
The IMF launched another
Leaders that focused on important
new and exciting program
topics such as Medicare Part D, new
with the formation of the
clinical trial design, and novel therapy
NurseAdvisoryBoard(NLB).
updates. And this year 15 Support
The first meeting was held
Group Leaders were invited to attend
in November and brought
ASH something that had never been offered before so that they could
together 20 oncology nurs-
attend the important sessions; gain first-hand knowledge; and take that
es from leading centers
information back to share with their groups.
treating myeloma patients.
The inaugural meeting of
I realize that I've now run out of space... and there is so much more to
the NLB was structured to
tell! So please go to the IMF's website and read about all the other inno-
accomplish objectives that
vative programs and activities the IMF has been up to this year that help
include: defining the needs
myeloma patients and their families around the world.
of the myeloma nursing professionals and their patients; establishing a
baseline awareness of novel therapies and associated side effects; develop-
I'd like to express our deepest gratitude to you and thank you for your
ing management guidelines for nurses who treat myeloma patients; facili-
belief in and support of the IMF we couldn't do it without you!
tating information flow between the IMF and oncology nursing organiza-
Happy New Year!
tions; sharing best practices and lessons learned in myeloma advocacy;
Susie Novis
Letters to the IMF
To Susie Novis and Brian G.M. Durie, MD:
To Susie Novis:
The advocacy efforts of the IMF are just extraordinary. Thanks for your
Thank you and your staff for inviting me to the Gala. I enjoyed it very
commitment to your patients and to those who simply need support and
much. The food was excellent and the desserts "tres bien."
direction. I so appreciate your post-show follow-up. See you for new
programs in 2007!
I know how hard you have worked. Certainly those of us who have MM
enjoy the fruits of your labor to the Nth degree. I have seen how the IMF
Selma R. Schimmel
has grown and has taken on its own speed. I know that I would be bereft
Founder & CEO
without the IMF doing what it does. The culmination of the research has
Vital Options International
been to the benefit of all of us with MM, so thank you for being there.
Editor's Note: Dr. Durie and Susie Novis participated on the Vital Options
I hope to have more years because of what you do and because of Dr.
International radio program, The Group Room®, on July 30 and August 27,
Durie's wisdom in the cause of a cure.
2006. These programs (#547 and #551, respectively) are now available
online at www.vitaloptions.org.
Nancy Sorrenti
800-45-CURE(87)
Board of Directors Profile
myeLoma today in conversation with richard saLetan
Myeloma Today: Please tell us a little about
now I see Dr. Morie Gertz. Over the past 16 years,
yourself.
I have received a variety of treatments for myeloma.
Richard Saletan: My wife Suzanne and I have been
Now I take prednisone and low-dose Cytoxan®.
married for over 40 years. We have two children. My
When did you become involved with the IMF?
son and daughter-in-law live in South Carolina, and
have two boys, ages 5 and 7. My daughter and her
Right after 9/11, I decided that I wanted to contribute
husband live in Massachusetts, and have a 4-year-
in some way to the myeloma community by then,
old daughter and a 2-year-old son. I take enormous
I had retired from my business career so I called
pride in my family and get the greatest joy from my
Susie Novis at the IMF. Immediately, she saw how
grandchildren!
my business experience could be of service to the
Foundation and its members. I began working with
Professionally, I have over 40 years of experience
Susie and Dr. Brian Durie in the business planning
in business management, strategic planning, and
area of the IMF. Soon thereafter, the "positioning
marketing for Fortune 100 companies. I founded
line" "Until There is a Cure... There is the IMF."
Weston Group Inc. and, as its chairman and CEO,
came into being. Next, we developed an annual
built it into a world-class consulting organization
plan for the IMF. Then I became a member of the
with over 75 employees. Our clients included Dow,
IMF Board and, a few years later, a member of its
Coca-Cola, Pepsi, General Foods, Chase Manhattan
Executive Committee.
Bank, American Express, Keebler, Nabisco, Bristol-Myers, Shell Oil, and
AT&T among others. I also served on the Board of Directors of a NYSE
Can you tell us about your work on behalf of the Foundation?
company.
I work closely with Susie and the Board. The annual business plan is
one project to which I continue to contribute every year. IMF progress
How did myeloma enter your life?
has been remarkable I have seen the Foundation triple its revenue in
One day, while playing golf, I felt a pain in my back after I made a swing.
the last five years! This growth in funding has allowed the IMF to create
The pain was so bad that I could no longer lift the club. I went home and
and to launch many new programs and services for patients around the
called my doctor. Because I had previously experienced problems with my
world, caregivers, and professional members of the myeloma community.
spinal discs, my doctor suggested I visit a chiropractor. The chiropractic
We have expanded our educational programs and increased our overall
adjustment did not offer relief. In fact, I collapsed at home the next day.
funding for research.
In the emergency room, when the doctor tried to sit me up, I went numb
from the middle of my chest down. A neurosurgeon rushed me into an
Probably the most sig-
MRI machine, then into surgery, where it was revealed that a compression
nificant research project
of the T6 vertebra produced a blood clot that had landed on my spinal
being funded by the
cord. A laboratory examination of the bone from the compression con-
IMF is the innovative
firmed the myeloma diagnosis. That was 16 years ago.
Bank On A Cure® ini-
tiative. In 2002, Susie
What medical treatment did you receive?
Novis called me after the
I spent 10 weeks in the hospital, then a year in physical therapy. My wife
IMF Scientific Advisory
happened to have worked for a hematologist, and he put me on a regimen
Board's annual retreat,
Saletan at an IMF Patient & Family Seminar
of melphalan and prednisone. After a year of treatment with my counts
and shared with me an
with Dr. Robert Kyle
below normal, he sent me to a local myeloma specialist who told me I had
idea of founding a col-
three years to live. I didn't like what I heard, so I sought out the most expe-
laborative DNA databank to provide doctors with access to DNA data that
rienced myelo-
could help move our understanding of myeloma forward. In my opinion,
ma doctor I
Bank On A Cure holds out tremendous promise, both for patients and the
could find. That
medical community. Cancer treatment that is customized for the patient's
man was Dr.
individual DNA profile will facilitate more effective and less toxic healing.
Robert Kyle at
This concept also assists pharmaceutical companies in developing, engi-
the Mayo Clinic.
neering, and refining drugs.
I remained a
What is your outlook for the future of the IMF?
patient of Dr.
Kyle's until he
Frankly, I look forward to the day when the IMF goes out of business! The
retired
from
bottom line is that the IMF is here to help patients; when a cure for this
clinical
prac-
disease is found and myeloma becomes history, our job will be done. But
tice. I still go
the only way the IMF will be able to achieve extinction is if we are suc-
to Mayo every
cessful in continuing to increase our funding for research, while we help
Saletan at the IMF Gala with wife Suzanne
six months, but
today's patients and their doctors deal with the disease. mt
and Susie Novis.
4
www.myeloma.org
Scientific Advisor Profile
Brian g.m. durie, md
Myeloma Today: Please tell us a little about
Family Seminar." Public knowledge about myeloma
your background.
was at a very low level. There was a critical need to
Brian G.M. Durie: I was born in Scotland, where I
improve day-to-day diagnosis and treatment for myelo-
graduated from the University of Edinburgh Medical
ma patients, as well as to promote new research. The
School in 1966. My internship was served at the
IMF brought together, for the first time, world experts
Edinburgh Royal Infirmary working as assistant to
in myeloma, working together in a collaborative effort
Professor Sir John Bruce, a prominent orthope-
to improve the quality of life for myeloma patients,
dic surgeon, and Professor Sir James Fraser, one
while working towards prevention and a cure.
of the leading internal medicine physicians in
Within the IMF's first year of existence, plans were made
Scotland. I completed my residency and fellowship
to publish Myeloma Today, to host the first Gala Benefit
in Hematology and Oncology at the Mayo Clinic in
to raise money and awareness about myeloma, and
Rochester, Minnesota. It was there that I first worked
to hold both the first Patient & Family Seminar in Los
under the direction of Dr. Robert Kyle. At the Mayo
Angeles and the first Clinical Conference on myeloma in
Clinic, I conducted several research projects includ-
Phoenix, Arizona. Since then, there have been over 100
ing special analyses of the impact of computers on
IMF Patient & Family Seminars around the world, and
medical research and medical practice.
regular clinical conferences of different types.
Upon completion of my fellowship training, I moved
Through these meetings, the IMF website, and numer-
to Tucson and began working in the Department of
ous publications, the Foundation reaches out to mil-
Hematology/Oncology at the University of Arizona. In
Brian G.M. Durie, MD
lions of people per year, including the over 20,000
my first year there, I worked on a computer project
National Director
newly diagnosed myeloma patients around the globe.
utilizing new statistical methods to calculate the num-
for Hematologic Malignancies,
Today, there is much more myeloma research and
ber of myeloma cells in the body at different stages
Aptium Oncology
many new drugs that offer hope for myeloma patients
of disease. This project led to the development of the
Specialist in Multiple Myeloma
faced with a dangerous disease.
and Related Disorders,
Durie/Salmon clinical staging system for myeloma,
Cedars-Sinai Comprehensive
What is your outlook for the future of the
with Dr. Sydney Salmon, which was published in
Cancer Center
myeloma community?
1975 and has been used worldwide for the evalua-
Los Angeles, California
tion of patients with myeloma. In 1981, I earned the
I have served as Chairman of the Board of the IMF,
appointment of Professor of Medicine.
as well as a Scientific Advisor, since the IMF was founded. The Scientific
Advisory Board is chaired by Dr. Robert Kyle. Currently, I also serve on the
In 1989, I assumed the chair as Professor of Clinical and Laboratory
Scientific Advisory Boards of IMF Latin America, IMF Japan, and Myeloma
Hematology, Chairing Cross and Westminster School of Medicine,
Canada. I am very proud of the work that the IMF has done and continues
University of London. I served as Chairman of the European Oncology
to do around the globe to fulfill its mission.
Research and Treatment Group (EORTC) Myeloma Committee when the
randomized trial comparing stem cell transplant with standard chemother-
In my work with myeloma patients, I have seen their average life expectan-
apy was planned and subsequently implemented by Dr. Michel Attal for
cy double, thanks in part to the education, advocacy, and research funding
the IFM group. In 1992, I came to Los Angeles to chair the IMF and work
of the IMF. New approaches to myeloma therapy have not only improved
at the Cedars-Sinai Medical Center as Director of Myeloma Programs.
the overall survival of patients but also their quality of life. Clinicians
and scientists are continuing to expand knowledge of myeloma and how
What are your current professional activities?
it responds to treatment. This work results in an improved outlook for
At Cedars-Sinai Comprehensive Cancer Center, I evaluate and treat from
myeloma patients. To this end, my latest projects include guidelines for
five to ten newly diagnosed myeloma patients each week, totaling several
bisphosphonate use to avoid ONJ as well as guidelines for DVT prevention
hundred new patients each year. I direct a variety of research projects,
related to the use of thalidomide and Revlimid.
including imaging with PET scans, molecular studies, virus culture
research, and a range of myeloma treatment studies involving novel
In the scientific and clinical communities, there has been an outstanding
agents. In my role as National Director for Hematologic Malignancies for
show of collaboration between the members of the IMF Scientific Advisory
Aptium Oncology, I coordinate clinical trial activities and set up spon-
Board, the Bank On A Cure® Advisory Board, and the International
sored research. I am co-Chairman, with Dr. Bart Barlogie, of the Myeloma
Myeloma Working Group. These experts represent all major myeloma
Committee for the Southwest Oncology Group (SWOG), which conducts
research facilities and hospitals around the world. Since I have been work-
major national clinical trials to evaluate new myeloma therapies.
ing in the myeloma field, we have never before been so firmly on the path
to a cure. mt
How did you become involved with the founding and growth of
the IMF?
Editor's Note: Dr. Durie has achieved many honors and awards. He is
the recipient of the Leukemia Society of America Scholar Award, and
The original ideas for the International Myeloma Foundation were laid out
received the US Hematological Research Foundation annual award, among
in November of 1989 in a coffee shop in London. Brian Novis, Susie Novis,
many others. He is a Marquis member of "Who's Who in America" and
and I were talking about what we could do to help make a difference for
"The Best Doctors in America." Dr. Durie holds an international patent for
myeloma patients. Little did we realize at the time how that conversation
scintillation autoradiography. He has published more than 600 research
would not only change our own lives but the lives of so many people
papers and abstracts, as well as numerous book chapters, articles, and
published books. The second edition of his textbook Multiple Myeloma and
around the world. IMF officially opened for business in October of 1990,
Related Disorders was published in 2005. Major recent published articles
with Brian Novis working out of the basement of his home.
include the new International Staging System in 2005 and the new Uniform
At that time, there had never been a "Myeloma Hotline" or a "Patient &
Response Criteria for Multiple Myeloma in 2006.
800-45-CURE(87)
5
Scientific & Clinical
48th annuaL meeting of the american society of hematoLogy
An overview of myeloma-related news
Introduction
these and possibly other mechanisms is allowing physicians to attack the
The mission of the American Society of Hematology (ASH) is to further the
cancer at its source, and to expand the use of Revlimid.
understanding, diagnosis, treatment, and prevention of disorders affecting
Bank On A Cure® Updates
the blood, bone marrow, and the immunologic, hemostatic, and vascular
systems. Since 1958, the ASH annual meeting has provided a forum for
In another significant ASH session, researchers working with the IMF's
discussing critical issues in the field of hematology. The 48th Annual ASH
unprecedented global, collaborative Bank On A Cure® initiative presented
Meeting and Exposition took
data identifying genetic pathways that may explain why some patients suf-
place on December 9th-12th at
fer from blood clots when undergoing thalidomide therapy for myeloma.
the Orange County Convention
The pathways may shed new light on individual differences in the
Center in Orlando, Florida.
response to cancer and its treatment, and may lead to the development of
Nearly 20,000 attendees from
screenings and tailored interventions to prevent these side effects.
around the world participated
The findings specifically involve thalidomide, a widely prescribed treat-
in the four-day meeting. Oral
ment that has been shown to extend and improve the quality of life for
and poster presentations, cho-
myeloma patients. An estimated 15% to 30% of patients treated with tha-
sen by peer-reviewers from
lidomide and dexamethasone without aspirin prophylaxis suffer a venous
abstracts submitted prior to the annual meeting, contained exciting
thromboembolic event (VTE) as a major complication. The research team
developments in scientific research. Plenary symposia and named lectures
looked at genetic differences between patients who suffered from blood
on specialized areas of hematology were also presented throughout the
clots and those who remained event-free, and attributed the VTEs to gene
meeting program.
clusters responsible for rapid drug metabolism, inflammation, and the
The advances in the treatment of myeloma caused much excitement at the
rate at which the tumor responds to treatment. This means patients with
48th annual meeting of ASH. A large number of abstracts presented dealt
genes that can be identified for rapid thalidomide metabolism and rapid
with novel agents such as Revlimid®, VELCADE®, and thalidomide. For
tumor breakdown were most likely to experience blood clots.
the first time at ASH, a whole session of the annual meeting was devoted
"We were surprised that we did not find genes involved with the blood
to the new paradigm of using novel therapies as the first approach to
coagulation cascade as a differentiating risk factor, but instead we identi-
the treatment of myeloma. Novel agents have been previously studied in
fied genes associated with DNA repair, drug metabolism, inflammation,
relapsed myeloma, so the current emphasis is on investigating their use
and tumor lysis," said Bank On A Cure co-director Dr. Gareth Morgan
in the frontline setting.
(Royal Marsden Hospital, London, UK). "While rapid tumor lysis is a fre-
Revlimid® Updates
quent problem in cancer care, in this case it affects only specific individu-
als patients we believe we can now identify in advance." In all, seven
Multiple significant studies presented show that Revlimid is helping a
genes were validated using a custom chip developed for Bank On A Cure.
growing range of myeloma patients by extending its utility. In some
"Identifying these pathways tells us who is at risk, why they're at risk,
cases, the data significantly build on previous studies to show long-term
and how we should approach intervention," said co-director Dr. Brian
response in newly diagnosed patients. In one study of Revlimid plus dexa-
Van Ness (University of Minnesota), a developer of the custom myeloma
methasone as frontline therapy, conducted by Drs. S. Vincent Rajkumar,
chip. "Our objective is not just to develop biological markers so we can
Martha Q. Lacy, and colleagues (Mayo Clinic, Rochester, MN), the overall
anticipate a patient's response, but to increase our understanding of the
response rate was 91%. With a low rate of disease progression after more
mechanisms of cancer, the drugs we use against it, and how that should
than two years, 67% of patients achieved a complete or very good partial
vary from one person to another." IMF chairman Dr. Brian G.M. Durie
response based on the International Myeloma Working Group's new uni-
(Cedars-Sinai Comprehensive Cancer Center, Los Angeles, CA) said, "Our
form response criteria for multiple myeloma. The relapse rate at two years
next step is to build this genetic data into a clinical risk model so we can
was only 18%. At the very least, these results are equivalent to what had
develop screens to predict how an individual patient will respond to treat-
been achieved in the past with autologous transplantation, but without
ment, and apply appropriate intervention strategies."
the transplant-associated risks and toxicities.
In a separate presentation -- Deep Vein Thrombosis In Myeloma: Estimate
Other studies presented at ASH show that: Revlimid plus dexamethasone
Of Problem And Recommendations For Therapy Based Upon A Survey Of
may "overcome the poor prognosis" of patients with certain chromo-
Members Of The International Myeloma Working Group -- aspirin was
some abnormalities (such as 13q deletion); Revlimid plus melphalan and
recommended as a prophylactic treatment for blood clots in myeloma
prednisone provides a complete response or very good partial response
patients who are treated with thalidomide or Revlimid®, a novel immu-
in nearly half of the elderly patients newly diagnosed with myeloma;
nomodulatory drug approved in 2006 in the US for myeloma patients
Revlimid combined with VELCADE is producing durable responses even
who have failed at least one previous treatment. The Bank On A Cure
in patients who have already failed on each drug alone; earlier use of
finding that genes related to inflammation are involved in this pathway
Revlimid results in a more favorable response in myeloma patients who
helps explain why aspirin is effective in reducing the occurrence of VTEs
have already failed another treatment.
in these patients.
Researchers have learned that Revlimid has multiple mechanisms of
Bank On A Cure researchers are also using the custom chip to identify
action, some still unknown, but many of which have been identified and
potential prognostic markers of survival outcomes. Early analysis pre-
characterized. The drug blocks the growth of tumor blood vessels, sensi-
sented at ASH -- SNP Associations with Event Free Survival in Myeloma
tizes the cancer cells to natural killer cells, and suppresses the TNF-alpha
from Two Phase III Clinical Trials using the Bank On A Cure Chip -- is
growth factor associated with inflammation. Combining the activities of
Continues on page 8
www.myeloma.org
Scientific & Clinical
anemia in muLtipLe myeLoma
Myeloma Today in conversation with Prof. Heinz Ludwig
Myeloma Today: What is anemia?
than in males, so women are at greater risk of develop-
Prof. Heinz Ludwig: Anemia is not a single
ing anemia. Chemotherapy, which is designed to target
disease but a condition with many forms and
and destroy the myeloma cells, can also destroy healthy
multiple possible causes. It can occur either
cells and reduce bone marrow function, causing a drop
because of the increased destruction of red
in Hgb levels and increasing the risk of anemia. Patients
blood cells (RBCs, erythrocytes) or from their
who show a low initial Hgb level prior to starting che-
loss (from bleeding) and/or insufficient pro-
motherapy are at particular risk of developing anemia
duction. The most important component of
that may be severe enough to require transfusions.
the RBC is hemoglobin (Hgb). The process
Are myeloma patients more at risk of developing
of manufacturing, recycling, and regulating
severe anemia than others?
erythrocytes is called erythropoiesis. Most of
Yes. In comparison with patients who have other can-
the work of erythropoiesis occurs in the bone
cers, myeloma patients are at particular risk of devel-
marrow. Low blood oxygen triggers kidney cells
oping severe anemia because, as a group, they have
to release the hormone erythropoietin (EPO),
reduced production of erythropoietin by kidney cells
which acts in the bone marrow to increase RBC
and, consequently, low blood levels of erythropoietin.
production.
Although overall reduced kidney function occurs in
What can you tell us about anemia in
only 5-10% of myeloma patients, the reduced EPO
multiple myeloma?
production occurs in as many as 50%. Even very slight
Anemia is a common complication of myeloma.
renal impairment can cause reduced erythropoietin
As in other situations, the anemia in myeloma
production that will lead to anemia.
Heinz Ludwig, MD, PhD
patients can have multiple causes. In myeloma
1st Department of Medicine
What can be done to combat anemia in
patients, anemia may be caused by the myeloma
Center for Oncology and Hematology
myeloma?
itself, by active anti-myeloma treatment, and/or
Wilhelminenspital
Exogenous recombinant human erythropoietins (epo-
by iron deficiency. It is hoped that as the effi-
Vienna, Austria
etins) have been used successfully to treat anemia
cacy of available myeloma treatments improves,
caused by myeloma itself and/or active anti-myeloma
the incidence of anemia cases caused by the disease itself will decrease.
treatment. In our high-dose therapy study (involving autologous stem
The adverse impact of anemia on physical functioning, quality-of-life, and
cell transplant), 1 out of 3 patients below age 70 received epoetin during
long-term outcome is well documented. It can cause disabling symptoms.
treatment. They received mainly epoetin alpha, although all three epo-
Therefore, the investigation and treatments of anemia should be an
etin agents are available (epoetin alpha, epoetin beta, and darbepoetin).
integral part of patient care. In fact, the majority of present-day myeloma
Through a combination of clinical studies and extensive experience in the
patients are likely to experience this condition at some point.
real-life clinical setting, epoetin has been shown to be efficacious and well
Please tell us about the European Cancer Anemia Survey.
tolerated, increasing Hgb levels, reducing the need for transfusion, and
improving quality of life. This favorable profile has been demonstrated
I participated in the recent European Cancer Anemia Survey (ECAS),
across a broad range of cancer types, irrespective of the treatment used.
which evaluated anemia in patients with myeloma and lymphoma in order
The effect of erythropoietin treatment is rapid, being seen as early as 4
to define anemia prevalence, incidence, and treatment patterns, as well as
weeks following the start of therapy. As for dosing, it has been found that
to identify anemia risk factors in European patients. Data for a subgroup
the once-weekly regimen of epoetin alpha or beta may result in improved
of 2,360 patients were analyzed; variables included age, sex, tumor type/
treatment compliance due to greater convenience than the three-times
stage, cancer and anemia treatment, World Health Organization (WHO)
weekly regimen. Darbepoetin can be given weekly or as infrequently as
performance status, and Hgb levels. There were 704 myeloma patients in
every three weeks.
the group of 2,316 total evaluable patients. Anemia rate at enrollment was
52.5%, and Hgb levels correlated with WHO scores. Anemia prevalence
How well do patients respond to erythropoietin therapy?
during ECAS was 85.3% for the myeloma patients. The overall incidence
Approximately 70% of myeloma patients with anemia respond to treat-
in chemotherapy patients was 55.4%. Only 47.3% of anemic patients
ment with epoetins. The question that we have been asking is: How can
received anemia treatment during ECAS. The overall Hgb nadir for initiat-
we increase the response rate? There has been one trial, involving a small
ing treatment was 8.9g/dL. In summary, myeloma and lymphoma patients
number of patients, which has shown that non-responders to erythropoi-
had a high prevalence and incidence of anemia; however, anemia was not
etin become responders when intravenous (IV) iron is given in addition
optimally treated. We hope that the predictive factors identified by ECAS
to the erythropoietin. Iron supplementation can convert a non-responder
will help clinicians develop optimal anemia treatment strategies for both
to a responder. This is a new field which may change the way we treat
myeloma and lymphoma patients.
myeloma patients who have anemia.
Which patients are at particular risk of developing severe anemia?
How does iron supplementation work, and how is it used?
Factors found to significantly increase anemia risk were low Hgb levels
Iron is the critical component of Hgb in RBCs which enables oxygen to be
prior to start of myeloma treatments, female gender, persistent/resistant
picked up in the lungs and carried throughout the circulation to sites where
myeloma despite active anti-myeloma treatment, and the use of platinum
oxygen is required. Iron absorption from dietary intake and utilization
as part of therapy. Myeloma patients above age 70 had an approximately
from bodily stores are severely altered in cancer-related anemia. Insufficient
90% risk of developing anemia. In females, normal Hgb levels are lower
Continues on page 8
800-45-CURE(87)
7
Scientific & Clinical
ASH OVERVIEW -- continued
showing that there are
Myeloma Education Programs
detectable genetic differ-
As part of the ASH special education programs, Dr. Philip R. Greipp (Mayo
ences between short- and
Clinic, Rochester, MN) chaired a program on multiple myeloma. Program
long-term survivors. From
presentations included Treating Patients Who Are Not Candidates for
these findings it may be
Transplant by Dr. Robert Z. Orlowski (University of North Carolina at
possible to better predict
Chapel Hill, Chapel Hill, NC), Thrombotic Complications of Myeloma
which patients will need
Therapy by Dr. Jeffrey Zonder (Wayne State University School of Medicine,
more aggressive thera-
Detroit, MI), and Bisphosphonate Complications Including Osteonecrosis
pies, and then to integrate
of the Jaw by Dr. Bhoomi Mehrotra (Long Island Jewish Medical Center,
genetic markers for adverse effects, along with recommendations for
New Hyde Park, NY ). A chapter based on this special session will be pub-
prophylaxis, to help optimize treatment on an individual basis for patients
lished in the Education Program Book, Hematology 2006.
with myeloma.
VELCADE® Updates
Conclusion
With the introduction of new myeloma therapies, the responses being
One significant study by Aptium Oncology Research Network (Los Angeles,
achieved have already translated into significantly improved average over-
CA) and Cancer Research and Biostatistics (Seattle, WA) focused on long-
all survival of patients. Even in the relapse setting, these new therapies
term follow-up of patients treated with VELCADE alone and in combina-
have doubled patients' life expectancy. "The many studies being present-
tion with dexamethasone as frontline therapy for myeloma. Forty-eight
ed at ASH confirm the good news we have been experiencing first-hand in
patients were evaluable and, at the end of treatment, the overall response
our work with myeloma patients," said Dr. Durie. "As we gain experience
rate was 90%. Response to VELCADE alone was rapid. Dexamethasone,
using new therapies alone and in combination with other new and exist-
which was added for 36 patients, improved responses in 23 patients. In
ing myeloma treatments, we are learning more about how blood cancers
summary, VELCADE alone and in combination with dexamethasone is an
respond to treatment, and which are the most critical pathways we need
effective frontline therapy for myeloma. The treatment is well tolerated
to block in order to stop the cancer. The wide range of presentations at
and toxicities were manageable and reversible. Stem cell harvest and
ASH should enable us to continue to improve the outlook for an expand-
engraftment were successful in all patients proceeding to transplant. This
ing range of patients. This is perhaps the most encouraging meeting of
regimen is now being compared to VAD in a phase III study comparing
ASH since I have been working in the myeloma field." mt
these two regimens as induction therapy prior to transplant.
ANEMIA IN MULTIPLE MyELOMA -- continued
availability of iron for erythropoiesis is the major limiting factor for RBC
to evaluate the safety and efficacy of IV iron versus standard practice
production, in spite of the presence of normal or increased storage iron.
in chemotherapy-induced anemia patients receiving darbepoetin alfa.
Although the ASH/ASCO guidelines recommend iron substitution "when
Interim efficacy analyses showed a higher response rate for darbepoetin
indicated," specific information on the mode of iron therapy and its indica-
alfa with IV iron, with no difference in the safety profile. Eligible patients
tion is not provided. There is little information on the efficacy of oral iron
with chemotherapy-induced anemia and a baseline Hgb value < 11g/dL
supplementation and the only randomized trial comparing oral iron with
received darbepoetin alfa 500 mcg administered every 3 weeks. Patients
no iron or IV iron did not reveal a benefit for the oral application mode.
were randomized 1:1 to IV iron 200 mg (administered as a single dose
It did, however, show a significant increase in response rate and quality
at the same time as darbepoetin alfa or in two doses of 100 mg within 3
of life in the group treated with intravenous iron. Recently, additional evi-
weeks) or standard practice (oral iron or no iron). A total of 400 patients
dence for the benefit of intravenous iron therapy in addition to treatment
were randomized. In summary, the combination of darbepoetin alfa and
with erythropoiesis- stimulating substances was provided at the meeting
IV iron appeared to be associated with a trend toward increased mean
of the European Hematology Association. A Scandinavian group (Hedenus
serum ferritin (protein that stores iron in the body) levels compared to
et al.) presented results of a small study on 69 patients with myeloma or
the standard practice control arm. The findings presented suggest the
lymphoma that were randomized to weekly erythropoietin beta with or
need for additional exploration of iron uptake and demand in cancer
without intravenous iron. The patients on IV iron experienced a higher
patients treated with darbepoetin alfa.
response rate and responses occurred faster. The other study that was
Are the data sufficient to support offering IV iron as a current
presented (Vandenbroek et al.) showed reduced transfusion need and
treatment option?
slightly higher response rate when darbepoetin was combined with bi- or
In the patients studied who received IV iron, the benefits of IV iron
thrice-weekly IV iron supplementation.
supplementation included higher response rates, shorter time to increase
The role of intravenous (IV) iron supplementation is of increasing inter-
of Hgb, lower need for RBC transfusions, and improved quality of life
est as a possible means of improving response. Recent studies evalu-
better as compared to patients treated with oral or no iron at all. It is also
ated the impact of IV iron supplementation in comparison with oral iron
important to note that there is a financial benefit to the reduced need for
therapy and with control in anemic cancer patients treated with epoetin
erythropoietins because patients require lower doses to achieve equal or
(alfa, beta, or darbepoetin). Two studies presented at ASH in December
greater benefit. Severe side effects were rare and tolerance was good in
of 2006 show that concomitant treatment with IV iron is superior to oral
most patients. Concomitant IV iron supplementation is not standard treat-
iron or no treatment.
ment at this time, and information on long-term safety is not available, but
IV iron administration seems likely to evolve as an important adjunct to
What are the type, dose, and schedule of IV iron in these studies?
treatment with erythropoietic agents. mt
One of these was a randomized, open-label, multi-center study designed
8
www.myeloma.org
Scientific & Clinical
2007 imf research grant recipients announced
The recipients of the 2007 IMF Research Grant awards were announced
at the gathering of the Foundation's Scientific Advisors, held at the
48th Annual Meeting of the American Society of Hematology (ASH) in Orlando, Florida.
2007 Brian D. Novis Senior Research Grant
Nicola J. Camp, PhD]
University of Utah School of Medicine
William Matsui, MD
Salt Lake City, Utah
Sidney Kimmel Comprehensive
"The Familiality of Multiple
Cancer Center
Johns Hopkins University
Myeloma and Related Phenotypes"
Baltimore, Maryland
The causes of multiple myeloma are largely
"Hedgehog Signaling in Myeloma
unknown, but it is likely that genetic muta-
Cancer Stem Cells"
tions caused both by environmental and
Many agents produce complete remis-
internal factors are involved. Dr. Camp
sions in multiple myeloma, but most
aims to identify the gene defects involved
patients experience disease relapse and
in myeloma. This may lead to helpful infor-
progression. Dr. Matsui and colleagues
mation about the cause and progression of
have studied the cells responsible for
myeloma, and to improvements in diagnosis and treatment of this disease.
myeloma growth and have found that
If genes are involved in myeloma, family members have a higher chance
myeloma "stem cells" resemble B cells
of having genetic mutations involved with myeloma than would a random
rather than plasma cells and share several characteristics with normal stem
person in the population. Results from familiality analyses immediately
cells. Therefore, strategies that target these specific stem cell pathways
provide information about which family members should be screened and
may be able to prevent myeloma growth and relapse. Dr. Matsui and col-
more closely followed. Familiality analyses also provide the information
leagues have found that the Hedgehog signaling pathway that is required
needed to design studies to find the genes for myeloma. Beyond investi-
for stem cell regulation during normal embryonic development is active
gating myeloma by itself, the same types of analyses can be used to inves-
in myeloma cells, and they propose to examine its potential as a target
tigate the relationship between cancers of different types. For example,
against myeloma stem cells.
are the relatives of an individual with myeloma at increased risk of only
myeloma or other blood cancers or solid tumor cancers as well? Dr. Camp
2007 Brian D. Novis Junior Research Grants
and colleagues will use the Utah Population Database to perform familial-
ity studies for myeloma and other blood and solid tumor cancers.
Roberto Bellucci, PhD
Dana-Farber Cancer Institute
Boston, Massachusetts
Claire M. Edwards, PhD
Vanderbilt University Medical Center
"Genetic Screening for
Nashville, Tennessee
Myeloma Cell Susceptibility
"Effects of VELCADE on the protein
to NK cell mediated lysis
expression profile at the myeloma-
using shRNA libraries"
bone interface in vivo"
At present, allogeneic stem cell trans-
VELCADE®, a proteasome inhibitor, rep-
plantation is the only approach that
resents an important advance in the treat-
is potential y curative for patients
ment of multiple myeloma. In addition to
with myeloma. The effectiveness of
inhibition of myeloma cell growth, proteasome inhibitors also affect bone
this therapeutic approach is in large
cells, resulting in an increase in bone formation. Therefore, the effect of
part due to the graft versus myeloma
proteasome inhibition in bone cells may play a role in the therapeutic
effect. A compelling example of this effect is provided by donor lym-
effects of VELCADE in myeloma. Dr. Edwards and colleagues will use a
phocyte infusion, where 40-50% of patients with myeloma can achieve a
pre-clinical model of myeloma and state-of-the-art proteomic techniques
response in the absence of any other therapy. However, when compared
to determine the effect of VELCADE on the protein expression profile of
to other chronic hematological malignancies, graft versus myeloma effect
myeloma cells and bone cells at the myeloma-bone interface in vivo. These
is less powerful: only 10-20% of myeloma patients can achieve a long-last-
studies will further our understanding of the mechanism of action of
ing complete response. Although several studies have shown that tumor
VELCADE in multiple myeloma, and may lead to the identification of novel
rejection is a coordinated immune response involving both the adaptive
therapeutic targets for the treatment of myeloma bone disease.
and the innate immunity cells, the molecular mechanisms are not yet fully
understood. Dr. Bellucci and colleagues propose to study the effects of
kinase genes on NK lytic activity.
Continues on page 10
800-45-CURE(87)
Scientific & Clinical
RESEARCH GRANT RECIPIENTS -- continued from page 9
2006
Lymphoma & myeLoma
Silvia Ling, MD
conference
Centenary Institute of Cancer Medicine and Cell Biology
Newton, Australia
"Predicting Response of Multiple Myeloma
to Proteasome Inhibitors"
TheCenterforLymphomaandMyeloma
at Weill Medical College of Cornell
Multiple myeloma is currently incurable by chemotherapy.
University hosted the Fourth Lymphoma &
However, about a third of relapsed multiple myelomas
Myeloma Conference on October 1921,
respond to a new class of drugs, the proteasome inhibi-
in New York City. Since 2000, this confer-
tors. It would be very helpful to identify those patients
ence has provided a broad update and
who will benefit from the drugs in order to expedite their
overview of rapidly expanding knowledge
treatment. If patients who will not respond to the drugs
in lymphoma and myeloma. As of 2006,
could be identified, then the expense and unpleasant
the conference has moved to an annual schedule. Dr. Morton
side effects of a needless treatment could be avoided. In addition, treatment with
Coleman of the Center for Lymphoma and Myeloma at New
therapies that are more likely to work would not be delayed. At present, there is
York Presbyterian Hospital, Weill Medical College of Cornell
no known way to predict which myelomas will respond to proteasome inhibitors.
University, chaired the Lymphoma & Myeloma Conference.
Dr. Ling and colleagues think they have found a molecular marker that can do so.
His colleague, Dr. Ruben Niesvizky, co-chaired the Myeloma
The aim of this project is to confirm that the marker predicts responsiveness to
Session.
proteasome inhibitors in human myeloma patients and to investigate related fac-
tors that determine sensitivity to the drug.
On October 19th, the first day of the conference, Session I
opened with a discussion of the biology of myeloma. This ses-
2007 IMF Japan AKI Award
sion also covered topics such as Cytogenetics and FISH, genomic
characterizations, animal models and imaging, angiogenesis, and
This myeloma research grant is awarded in memory of IMF Japan founder
cell cycle control in myeloma. Session II covered the pathogen-
Akira Horinouchi.
esis and treatment of myeloma bone disease. Next, a luncheon
Akira Sakai, MD, PhD
symposium addressed the clinical application of current and
Research Institute for Radiation Biology
future directions in myeloma therapy, especially for newly diag-
and Medicine
Hiroshima University
nosed patients. Diagnosis, staging, and effective management
Hiroshima, Japan
strategies for the various types of myeloma were discussed in
"Analysis of the aspects induced by Cyclin
Sessions III & IV. These sessions also addressed relapsed and
D1 overexpression in myeloma cells leads
refractory myeloma, and the use of VELCADE® and Revlimid®
to a new strateg y of treatment of multiple
as initial therapy for myeloma.
myeloma"
Next day started with a session that debated the issues associated
Myeloma cells in the bone marrow are a hetero-
with high-dose chemotherapy and transplantation. After lunch,
geneous cell population. Dr. Sakai reports that
an update on immunomodulators in myeloma was followed by
phenotypic analysis of mature myeloma cells corre-
an immunotherapy update, with included presentations on the
lates with the cells' sensitivity to chemotherapeutic
role of vaccines in myeloma. Most of the sessions on the closing
agents. A recent study analyzing gene expression in
day of the conference focused on lymphomas, with the excep-
myeloma cells showed that the cells fall into 7 groups. Two showed a high expres-
tion of the final session of the day, which included a presentation
sion of cyclin D1 together with a low expression of cyclin D2, and they belong to
on PET scanning for both lymphoma and myeloma.
the low-risk group based on event-free and overall survival. Dr. Sakai also reported
that cyclin D1 over-expression was detected in about 40% of myeloma patients,
Drawing on the expertise of more than 50 leaders in the fields
and no chromosomal abnormalities were detected in half of them. It is not clear
of molecular biology, pathology, immunology, and transla-
whether the down-regulation of cyclin D2 in myeloma cells might offset cyclin D1
tional and clinical research, the 2006 Lymphoma & Myeloma
over-expression in cell biology, and it is not clear how expression of these cyclin
Conference presented a thorough understanding of the evolu-
Ds are regulated. Since cyclin D1 promotes the cell cycle progression, and cyclin
tion of thought and therapy of the topics under discussion. The
D1 over-expression is a marker of high-grade malignant cells in breast carcinoma
integrated, interdisciplinary approach of the conference made
or colon carcinoma, Dr. Sakai and colleagues sought to explain why cyclin D1
for a stimulating, interactive setting for continued medical edu-
over-expression appears to be a favorable prognostic variable for myeloma patients
cation for physicians, physicians-in-training, nurses, and pharma-
treated with high-dose chemotherapy and single or double autologous transplan-
cists interested in lymphoma, myeloma, and related plasma cell
tation. Recently, Dr. Sakai and colleagues have established a myeloma cell line with
disorders and their management. mt
cyclin D1 over-expression to analyze biological changes in these cells. They plan
to analyze characteristics of myeloma cells with cyclin D1 over-expression purified
from the bone marrow of myeloma patients, and to confirm the aspects found in
the cyclin D1 transfectant. mt
10
www.myeloma.org
Nurse Leadership Board
groundBreaking retreat focuses on noveL therapies
The first meeting of the Nursing Leadership Board
The IMF was honored to have Deborah Doss
(NLB) took place November 45, in Dallas, Texas.
from Dana-Farber Cancer Institute acting as the
The scope of this project is to develop broad recommen-
Chairperson for the task force committees, along
dations for nursing care for myeloma patients, and at
with fellow members of the executive committee
the initial NLB Retreat the focus was on Novel therapies.
Kathleen Colson, also from Dana-Farber, and Lisa
The NLB is an exciting new initiative of the International
Smith, from the Cancer Center of the Carolinas.
Myeloma Foundation. The first goal for the Board is to
Special thanks go to Kathleen and Lisa for their
develop guidelines for nurses on the management of side
participation as faculty facilitators at this inaugural
effects associated with the novel therapeutic agents used
meeting.
in treating myeloma patients in order to help nurses in the
community to optimize care.
The weekend began with a welcome from Susie
Novis, President of the IMF, and Diane Moran,
Twenty nurses from the leading centers treating myeloma
Senior Vice President Strategic Planning of the IMF,
patients in the US were selected to participate in the NLB. The NLB will
who presented the vision, charter, and meeting focus of the NLB.
expand to include nurses internationally, to ensure that patients around
the world receive the best care possible.
Dr. Brian Durie provided an excellent review of novel therapies to set the
stage for the important work that the outstanding team of nurses had in
At this inaugural meeting the founding nurse members were:
front of them. He focused on the new agents Revlimid®, Thalomid®, and
Velcade®, alone and in combination, and in the various indications for
Beth Faiman, Cleveland Clinic; Stacey Sandifer, Cancer Center of the
their use.
Carolinas; Bonnie Jenkins, Myeloma Institute/UAMS; Elizabeth Billoti,
St. Vincent's Comprehensive Cancer Center; Emily McCullagh, Memorial
Lisa Smith presented the spectrum of side effects with novel therapies,
Sloan Kettering Cancer Center; Ginger Love, H. Lee Moffitt Cancer Center
which opened the discussion among the participants on their experience.
& Research Institute; Jeanne Westphal, Meeker County Memorial Hospital;
This discussion became the framework for developing the management
Joseph Tariman, formerly of Northwestern University (currently a PhD.
guidelines. The objective of this session was to present an overview of
candidate at University of Washington); Kathleen Curran, University of
common side effects often associated with novel therapies. The nurses
Pittsburgh; Kathy Lilleby, Fred Hutchinson Cancer Research Center;
then reviewed the NLB comprehensive needs assessment survey that had
Katy Rogers, Sidney Kimmel Comprehensive Cancer Center; Kena Miller,
been completed by each participant prior to the retreat, for insight into
Roswell Park Cancer Institute; Maria Gavino, MD Anderson Cancer Center;
nursing clinical practice experience, and to explore gaps that may exist
Patricia Mangan, Hospital of the University of Pennsylvania; Sandra Rome,
between protocol and practice-evident side effects.
Cedars-Sinai Medical Center; Teresa Jahns, Mayo Clinic; Page Tertolotti,
Samuel Oschin Comprehensive Cancer Institute.
The needs assessment survey showed that the treatment protocols with
which nurses have the most experience are: Revlimid/dex, Velcade, and
Founding members of the Nursing Leadership Board
Continues on page 12
800-45-CURE(87)
11
Nurse Leadership Board
NURSING LEADERSHIP BOARD -- continued
Thalomid. Of the common side effects observed by the nurses as indicated
The first day of the retreat
on the survey, deep vein thromboses (DVTs) are the most challenging to
ended with Dr. Durie lead-
manage. The NLB identified which side effects impact quality of life and
ing the last interactive ses-
which are life-threatening. The Board then identified which were the top
sion. In this session, he
five side effects and "the survey said..."
presented three case stud-
Top five side effects:
ies. Case one was an older
patient on Revlimid who
· Peripheral Neuropathy
was experiencing neutro-
· Thrombocytopenia/neutropenia/myelosuppression/infection/fever
penia. Case two was that
· DVT
of a younger patient who
· Steroid related
had had a transplant. After
· GI related
two years of remission he
showed increased IgG lev-
Dr. Durie then led an interactive discussion on enhancing patient quality
els, so he was now being
of life, focusing on current trends in supportive care. The objective of
Katy Rogers and Sandra Rome
treated with Velcade. This
this session was to provide an overview of commonly used methods of
patient also had chromosome 13 deletion. After four cycles of Velcade
supportive care, to describe trends in protocol-based supportive care, to
with an excellent response, he experienced thrombocytopenia (low
discuss the NLB members' experience, and to identify and explore gaps
platelet count). Case three was a patient on frontline Thalomid/dex, with
that may exist between protocol-based supportive care trends and nursing
multiple risk factors who was experiencing numerous treatment related
clinical practice.
side effects. Following each case the question was asked, "How would you
Lisa Smith followed
manage this patient?"
Dr.
Durie
with
The Board began the Sunday session by identifying those side effects
the discussion on
that they felt were the most crucial: those that seriously affected patients'
Enhancing Patient
quality of life and those that could be life-threatening. The NLB identified
Quality of Life. This
the following side effects: peripheral neuropathy, thromboembolic events,
session's objective
myelosuppression, steroids related, and GI related problems. The nurses
was to highlight NLB
then went into small breakout groups for in-depth discussions, with a
survey-identified
directive to develop an issues statement, a corresponding position state-
treatment protocols,
ment and strategic recommendations for each side effect. They focused
to discuss NLB side
on how to treat these side
effect management
effects, and were asked to
At the Saturday evening NLB dinner,
approaches identi-
begin the process of reach-
Susie Novis was extremely pleased
fied in the survey,
ing a consensus and estab-
to make the exciting announce-
and to enumerate
lish guidelines.
ment that Celgene Corporation will
their
experience
Kathleen Colson and Lisa Smith
provide a grant to the IMF to be
with specific side
The next steps for the
used to enable each member of the
effects that occur with the Revlimid/dexamethasone, Thalomid/Velcade,
Board are to develop a
Nurse Leadership Board to attend
and Velcade/Melphalan regimens, respectively. These experiences and
consensus and to write the
the XIth Myeloma Workshop, which
those with other commonly used protocols will become the framework
Management Guidelines for
wil take place in Greece, June
for the guidelines.
Nurses Treating Myeloma
25th 29th, 2007. The room went
Patients.
After lunch Diane Moran led a discussion outlining some of the major
wild! The IMF thanks Celgene for
consequences associated with side effects. Of major importance were the
The establishment of the
this incredible and unprecedented
questions she posed:
Nurse Leadership Board
opportunity to bring the Nurse
is truly a groundbreaking
Leadership Board to this premier
· What are the current side effect management consensus and guidelines?
endeavor, and the consensus
meeting a learning experience
· What are the nursing needs associated with improving the management
of the Board and the IMF is
until now not offered to nurses.
of side effects?
that the work that they will
do will change the lives of myeloma patients around the world. Treatment
Diane then discussed how the NLB would develop and define position
and management of side effects impacts not only a patient's ability to stay
statements along with strategic recommendations.
on a therapy but also to gain full benefit from the therapy, and to enhance
Dr. Durie then led the group through a series of interactive questions
quality of life. The IMF is honored to collaborate with such an esteemed
focused on needs assessment, such as: "What is the primary role of oncol-
Board and we look forward to the work that lies ahead.
ogy nurses in management of patient side effects during treatment for
The IMF would also like to thank the inaugural sponsors of the NLB,
myeloma?"
Celgene Corporation and Millennium Pharmaceuticals. mt
1
www.myeloma.org
Supportive Care
nutritionaL and LifestyLe infLuences on muLtipLe myeLoma
Myeloma Today in conversation with Dr. Loch Chandler
Myeloma Today: Please tell us about your
intake may reduce risk for myeloma1. Green tea
professional orientation.
has many benefits, and one study has shown that
Dr. Loch Chandler: I am a naturopathic doctor and
it can cause myeloma cell death2.
a licensed acupuncturist. The two areas of emphasis
Should myeloma patients take supplements?
in my practice are cancer and clinical nutrition. I
enjoy working closely with the other practitioners
Nutritional deficiency is common during cancer
who are a part of a person's healthcare team, and
treatment, but nutritional supplements should
helping people minimize the side effects of cancer
be chosen with great care. Supplements can ben-
treatment. By helping to relieve side effects, we can
efit and harm. Using vitamins and/or herbs may
help improve the patient's quality of life and help
increase or decrease the toxicity and/or effective-
support their recovery process.
ness of chemotherapy. For example, Vitamin C
may interfere with VELCADE®. It is best to seek
Acupuncture can help people with cancer before,
professional advice and to take an individualized
during, and after treatment. It helps to optimize
approach based on situation and needs.
the flow of energy, or Qi, in the body and is used
to treat pain, nausea, peripheral neuropathy, and
What about lifestyle choices? Why is exercise
fatigue. Naturopathy blends ancient, pre-modern,
so important?
and current philosophies and therapies. Its roots
Exercise improves blood counts, energy, mood,
are in European "nature cures," which focus on
quality of life, sleep, immune function and weight
diet, hydrotherapy, herbal medicine, and lifestyle
regulation, while decreasing blood pressure and
changes.
reducing nausea. Exercise is important for both
Loch S. Chandler, ND, MSOM, LAc
cancer patients and caregivers. While physical
What is integrative medicine and how can it
Providence Integrative Medicine Clinic
Portland, Oregon
activity is vital, an individualized plan is best,
help during cancer therapy?
since each person's needs and abilities vary.
Integrative medicine is a healthcare model that blends individualized,
evidence-based complementary and alternative medicine (CAM) together
Can naturopathy reduce the effects of peripheral neuropathy?
with conventional medicine in a patient-centered and whole-person
Peripheral neuropathy (PN) can be a side effect of cancer and cancer treat-
approach. Examples of CAM therapies include acupuncture, naturopathic
ment, nutritional deficiencies, diabetes, and cholesterol-lowering medica-
medicine, nutritional and supplement assessment, herbal medicine,
tions. It is most commonly described as numbness, pain, tingling, and
homeopathy, massage, and mind-body therapies.
weakness in hands and feet. PN can adversely affect sleep and the overall
quality of life. Conventional treatments for PN can include non-steroidal
Integrative medicine can help mobilize a person's natural healing ability,
anti-inflammatories, tricyclic anti-depressants, SSRIs, anticonvulsants,
improve tolerance of conventional therapy by decreasing side effects,
and implant devices. There are naturopathic approaches that can help
decrease risk of cancer recurrence, and address a range of quality of life
in preventing or reducing the effects of PN. The history of PN shows a
issues, such as sleep, fatigue, poor appetite, stress management, weight
strong correlation to nutritional deficiencies so improved nutrition, an
loss, and constipation.
individualized supplement program, acupuncture, and drinking plenty
Some patients and caregivers who think that they've never tried mind-
of water can significantly reduce the severity of symptoms. In one study,
body therapies might actually be benefiting from such therapies already!
27% of patients who used CAM therapies (supplements, acupuncture,
Mind-body work includes activities such as individual and family coun-
magnets, herbal remedies, and chiropractic) reported an improvement in
seling, and participating in support groups. The benefits include stress
neuropathy symptoms3.
management and relaxation, and connecting with other people affected
What should we look for in an integrative medicine practitioner?
by cancer. Examples of other mind-body therapies include meditation,
relaxation, hypnosis, and visual imaging.
Choose a qualified integrative medicine practitioner who has experience
treating people with cancer. When interviewing prospective practitioners,
What role does nutrition play?
seek out individuals who are licensed naturopathic doctors (ND) and acu-
Certain food groups can help the body detoxify from cancer-causing sub-
puncturists (LAc) with a degree from a 4-year accredited school, licensed
stances, decrease levels of hormones that stimulate cancer cell growth,
counselors or social workers (LCSW, MSW, LPC) with a Masters degree,
reduce blood supply to cancer cells, better balance the immune system,
and certified graduates of accredited mind-body programs (e.g. Harvard
and improve the body's healing and recovery capabilities. I recommend
Mind-Body Program or Center for Mind-Body Medicine). Also, tell your
the Mediterranean diet, which is high in vegetables, beans, fruits, nuts,
oncologist and other conventional care providers about any use of CAM
whole grains, olive oil, and fish. It includes some dairy -- mostly as cheese
treatments and supplements, and ask all members of your healthcare team
and yogurt -- and moderate alcohol. The diet is low in red meat, poultry,
to consult with one another.
mt
potatoes, and refined sugar. Studies show many benefits to this diet: less
1
obesity and heart disease, and a 60% reduced incidence of cancer. In par-
Brown, Cancer Causes & Control, 2001;12(2):117-25.
2
ticular, studies have shown that cabbage family vegetables are associated
Nakazato, Clin Can Res, 2005;11(16):6040-9.
3 J Neurol Sci, 2004 Mar 15;218(1-2):59-66.
with lower rates of many cancers; one study indicated that more frequent
800-45-CURE(87)
1
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.
Question:
outside of the vertebral body.
I have compression fractures in my
The balloons used in kyphoplas-
back that are extremely painful. I
ty may allow some correction of
have heard other myeloma patients
the deformity by re-expanding
mention a procedure called "kypho-
the compressed vertebra. The
plasty" that may help this problem.
expansion of the balloons also
What can you tell me about it?
forces the soft, central bone tis-
sue out toward the harder, outer
Answer:
bone of the vertebra, where it
Myeloma is a cancer that affects
"dams up" the cracks and fis-
the plasma cells of the bone mar-
sures in the fractured vertebra.
row. This rare and complex disease
The balloon is deflated and with-
replaces healthy bone marrow with
drawn after it is inflated, leaving
malignant plasma cells (myeloma
a void or cavity. PMMA is then
cells), often causing widespread
inserted into the cavity under
development of lesions and destruc-
low pressure. Because the walls
tion of bone. Lesions occur most
of the vertebra are dammed up,
commonly in the bones of the spi-
the placement of the cement is
Hotline staff: Debbie Birns, Paul Hewitt, and Nancy Baxter
nal column. Most myeloma patients
more carefully controlled than in
experience pain, especially in the back and the ribs. Sudden severe back
vertebroplasty, and the cement is therefore less likely to ooze out. With
pain can indicate that the vertebral body of a vertebra has fractured or
kyphoplasty, doctors are, in many cases, able to restore some portion of
collapsed. Fractures of the bones of the spinal column are called vertebral
a patient's lost height. This depends largely on the state of the fractured
compression fractures (VCFs) or simply, spinal fractures. Treatments to
bone tissue and how much time has passed since the fracture. Balloon
alleviate the pain associated with VCFs range from over-the-counter medi-
kyphoplasty has been performed since 1998.
cations to major open spine surgery.
Results from the first multicenter long-term, prospective clinical study
Kyphoplasty is a procedure designed to help patients who have "intrac-
evaluating the benefits of balloon kyphoplasty treatment of spinal frac-
table spinal pain secondary to vertebral body fractures." In lay terms, that
tures were published in the September 2006 issue of Spine. The study
means pain that does not respond to bed rest, pain medications, or back
evaluated 155 elderly patients with 214 spinal fractures caused by primary
braces, and is caused by breaks in the vertebrae.
osteoporosis, secondary osteoporosis, or multiple myeloma. Multiple out-
comes were evaluated over two years following balloon kyphoplasty, and
The vertebrae, when fractured, often compress nerves, resulting in unre-
the results demonstrated that patients experienced improvement in back
mitting pain. These fractures can also cause problems in addition to pain,
pain, back function, and quality of life. In addition, the study documented
depending upon which vertebrae are affected. For example, when the
improvements in restoring vertebral height.
thoracic (mid-back) spine is compressed, a patient can have decreased
lung capacity. When the lumbar (lower back) spine is compressed, a
In order to determine if kyphoplasty would be an appropriate option for
patient can have decreased lung capacity and even loss of appetite due to
you, you should speak to your oncologist, who may refer you to an ortho-
a reduction in abdominal space. And vertebral compression often leads to
pedic surgeon, neurosurgeon, or interventional radiologist. Kyphoplasty
significant loss of height.
requires special training; it is especially important that the doctor who
performs the procedure have experience in dealing with myeloma
Previously, the only procedure available to help support collapsed ver-
patients, since bones affected by myeloma are more fragile than those
tebrae was vertebroplasty, which involves injecting a semi-liquid plastic
of people who undergo kyphoplasty for osteoporosis. If your oncologist
cement called polymethylmethacrylate (PMMA) under high pressure into
thinks that kyphoplasty may be a viable option but doesn't have a referral
a fractured vertebral body through one or two bone biopsy needles. After
for you, you may call us here at the IMF Hotline at 800-452-CURE (2873)
injection, the PMMA hardens. This technique was developed to stabilize
or visit the Kyphon Inc. website, www.kyphon.com, which lists specially
the spine, increase mobility, and decrease the pain from vertebral com-
trained doctors by area and zip code.
pression fractures. It does not, however, help with the spinal deformity,
and there is a danger of leaks of PMMA into surrounding tissues.
The IMF has published a booklet, Understanding Balloon Kyphoplasty and
Myeloma-Induced Vertebral Compression Fractures, which may help you
Kyphoplasty involves inserting (under image guidance, using a radiocon-
be better able to discuss your condition with your physician and formulate
trast medium) two balloons, one in either side of the vertebral space. The
a treatment plan that's best for you. This publication is available online
balloons are then inflated. By inflating the balloons, the doctor forces the
at www.myeloma.org. You can also request a free of charge printed copy
"cancellous" or soft, central part of the bone outwards toward the
from the Foundation. mt
14
www.myeloma.org
International Affiliates
updates from around the gLoBe
GERMANY
After attending the 2006 IMF Support Group Leaders' Retreat in Arizona,
As part of the mission of the IMF
Francesca Plaster was determined to make the most out of the Myeloma
to provide the best in patient
Awareness Week in her home Province of British Columbia. She contacted
education and to increase col-
local newspapers and radio and television stations. The response was
laboration between myeloma
quite favorable. Next, Francesca provided information about myeloma
specialists
throughout
the
and the Greater Vancouver Multiple Myeloma Support Group to the local
globe, two members of the IMF
government representative and asked that an appeal be submitted to the
Scientific Advisory Board (SAB)
capital to request that Myeloma Awareness Week be proclaimed officially.
participated in patient meetings
Then she asked, "Could we get the whole month proclaimed instead of
Dr. Orhan Sezer confers with
in Germany this year.
just one week?" As a result of Francesca's efforts, the month of October
Dr. Robert Kyle
was officially proclaimed Myeloma Awareness MONTH!
In June, SAB member Dr. David Vesole spoke at a patient meeting in
Würzburg. The event, hosted by Dr. Hermann Einsele of the University of
Würzburg and Mrs. Kleineberg, attracted more than 100 participants.
In September, Dr. Robert Kyle, Chairman of the SAB, participated in
Multiple Myeloma Days at the University of Heidelberg. Hosted by SAB
member Dr. Hartmut Goldschmidt, the event included more than 220 par-
ticipants. The program consisted of patient meetings, special educational
programs for clinicians, and a gathering of the German-Speaking Myeloma
Multicenter Group (GMMG).
Myeloma Canada seminar in Montreal, Quebec
The first Myeloma Awareness Month event in British Columbia was an
appearance on a morning talk show by Dr. John Shepherd of Vancouver
General Hospital and Michelle Krall Wigmore. Dr. Shepherd answered
questions about myeloma and Michelle related the experiences of her
mother, Adella Krall, who was diagnosed with the disease in 1996.
Michelle's sister is Grammy-winning jazz vocalist Diana Krall, whose
concerts have raised much-needed funds for Vancouver General Hospital.
Congratulations to Francesca, the Greater Vancouver Multiple Myeloma
Support Group, and all who contributed to the success of British
(left to right) Karin Kleineberg, Rolf Kunstmann, Prof. Dr. Martin Wilhelm,
Dr. Kerstin Schäfer-Eckart, Dr. Robert Kyle, Dr. Tobias Schertlin,
Columbia's Myeloma Awareness Month!
Prof. Dr. Hannes Wandt
In Ontario, an interactive vid-
In November, Dr. Kyle returned to Germany for patient meetings in
eoconference -- Current and
Nürnberg and Berlin. The Klinikum Nürnberg Nord hematology/oncology
Emerging Therapies in the
staff -- Drs. Wilhelm, Schäfer-Eckart, Schertlin, and Wandt -- and Karin
Treatment of Multiple Myeloma
Kleineberg and Rolf Kunstmann, leaders of Myelom Hilfe Nordbayern,
-- was held on October 12th
fit in 45 additional walk-ins to the more than 80 pre-registered attendees
with the participation of five
for Dr. Kyle's talk on the diagnosis of myeloma. Another 90-plus patients,
cancer centers throughout the
caregivers, clinicians, and residents attended Dr. Kyle's detailed overview
province. The evening was host-
of myeloma and novel therapies at a patient meeting hosted by Dr. Orhan
ed by the London & District
Sezer of Berlin's Charité Hospital and Elke Schutkowski, leader of the
Myeloma Support Group. The
Berlin support group.
Dr. John Shepherd, Francesca Plaster,
presentation, which was made
and Michelle Krall Wigmore
In 2007, the IMF plans to expand its program of bringing American-based
by Dr. Donna Reece, was viewed
experts to European patient meetings and offering speaking opportunities
by approximately 100 patients. The support group is planning to hold
for European-based myeloma experts in the United States.
more educational videoconferences in the future. Three days later, on
October 15th, the 5K Walk for MM Research at Ontario's Princess Margaret
CANADA
Hospital drew 200 participants. On October 26th and 29th, two radio web-
Myeloma Canada, the national organization and IMF affiliate, was formed
cast programs devoted to myeloma were broadcast in English and French,
in 2004. Today, there are 14 myeloma support groups across Canada,
reaching a large audience throughout Canada and the US.
all actively involved in myeloma awareness and education and in rais-
In Quebec, the second annual Myeloma Canada seminar attracted over
ing funds for research. October of 2006 was a very busy month for the
175 attendees to Montreal on October 27th. The seminar -- Myeloma
Canadian myeloma community.
Continues on page 16
800-45-CURE(87)
15
International Affiliates
UPDATES FROM AROUND THE GLOBE -- continued
JAPAN
IMF Japan was founded in 1997 by Akira Horinouchi, a
myeloma patient who dedicated himself to improving
the quality of life of other patients in Japan. Over the
last nine years, IMF Japan has grown to serve over 1,000
members. With the support of a nationwide network
of more than 60 consulting physicians, IMF Japan has
significantly furthered the cause of myeloma education
and awareness.
In 2006, IMF Japan expanded its meeting and seminar
program beyond the major cities of Tokyo and Osaka
into the countryside. Such events are of the utmost
importance to a patient population with more limited
Greater Vancouver Multiple Myeloma Support Group celebrates
access to information and treatment. In an effort to
a successful Myeloma Awareness Month
further advance patient education, volunteers regularly
Today & Tomorrow: Progress & Challenges -- featured a faculty of myelo-
translate the latest available medical texts for dissemina-
ma experts from Canada and the US, including Drs. Morie Gertz (Mayo
tion to IMF Japan members. IMF Japan also produces an original annual
Clinic), Chaim Shustik (McGill University), Silvy Lachance (University
publication, GAMBARIMASSHOI, which is distributed to the patient com-
of Montreal), Richard LeBlanc (Quebec University Hospital Centre),
munity, medical doctors, and pharmaceutical companies.
and Karen van Hoeven (The Binding Site). Pierre Deschamps from the
As part of its advocacy effort in July of 2006, IMF Japan petitioned the
Canadian Human Rights Tribunal discussed patients' rights, and IMF's
Ministry of Labor & Welfare for the approval VELCADE® in Japan. In
David Smith provided an update on Bank On A Cure® and presented the
October, VELCADE was finally approved in Japan for relapsed or refrac-
Understanding Bisphosphonates video.
tory myeloma in patients who have received at least one prior therapy.
The IMF congratulates Myeloma Canada and all its members on the many
Zometa® also received approval in Japan in 2006, and thalidomide was
accomplishments of 2006!
submitted for approval. The IMF congratulates all who contributed to
these positive developments for the myeloma community in Japan. mt
We speak
your language
The IMF publishes a comprehensive
library of informative myeloma
resources. Used by patients, caregivers,
healthcare professionals, and anyone
needing a reliable source of up-to-date
information regarding the disease,
these publications are critical to
a better understanding of myeloma.
800 452-CURE (2873) www.myeloma.org
1
www.myeloma.org
Support Groups
rhode isLand
chattanooga area
muLtipLe myeLoma support group
muLtipLe myeLoma
(rimmsg)
support group
CarolMurray-RossiwasdiagnosedwithmyelomainSeptemberof2003.Shefelt The Chattanooga Area Multiple Myeloma Support Group
a need to connect with other patients battling the same disease but there was
was founded by Tommy Tonkin in 2002, shortly after
no myeloma support group in Rhode Island. So, in April of 2005, Carol founded the
his diagnosis. Running the group became a joint project for
Rhode Island Multiple Myeloma Support Group (RIMMSG). Five members attended
Tommy and his wife, Carroll. Together, they attended the
the first meeting. The group has grown significantly since then it even serves mem-
annual IMF Support Group Leaders Retreat and implemented
bers who are unable to attend meetings in person. "RIMMSG enables patients and
what they learned to help their group grow and develop.
caregivers to exchange comfort and empowerment," says Carol, "I derive much of
Sadly, Tommy passed away in September of 2005. But Carroll
my strength from
other group mem-
bers, as well as
from participat-
ing in community
service, dissemi-
nating myeloma
information, and
increasing myelo-
ma
awareness.
And the IMF has
been very sup-
portive of me and
(left to right, standing) Joann & Bill Feaster, Gail & Steve Sullivan of the group. "
(left to right, seated) Gary & Susan Burns,
In October of
Frank & Deb Duchala, Bob & Jo Aspri
2006, Carol and
Kim Shank, Rhonda Edwards, and Carroll Tonkin.
the RIMMSG took on the formidable task of organizing a Multiple Myeloma Awareness
Week in her state. The RIMMSG received a tremendous outpouring of support from
was determined to carry on this part of her husband's mis-
the local community. Scott Avedisian, the mayor of Warwick, RI, declared October
sion. "Our group was so important to Tommy. He reached
22-28 to be Multiple Myeloma Awareness Week and displayed the IMF banner on
out and did so much for so many members of the myeloma
Warwick City Hall for the duration of the
community, and I just had to continue his work. The group is
week to help raise public awareness. City
a big part of his legacy."
employees donated money to the RIMMSG
by sponsoring a "dress down day."
Carroll was reluctant to attend the 2006 IMF Support Group
Leaders Retreat without Tommy, but "as soon as I got off
The Rhode Island Multiple Myeloma
the plane, I felt as if I was surrounded by my best friends!"
Awareness Week included the RIMMSG's
She now co-leads the group with oncology education nurse
First Annual Money for Miracles fundraiser,
Kimberly Shank, RN, and oncology social worker Rhonda
which was held on October 27th. The event
Edwards, MSSW, ACSW, of the Memorial Cancer Resource
featured the unveiling of the group's new
Carol Murray-Rossi selects the
Center in Chattanooga. Kim and Rhonda alternate helping
logo, which now appears on the RIMMSG winning raffle ticket during RIMMSG's
facilitate the group's meetings. The group includes members
banner, as well as on coffee mugs available
Money for Miracles celebration
from Tennessee, Alabama and Georgia.
for sale. Money for Miracles also included
a raffle, a silent auction, and a presentation by Robin
"Our meetings often feature presentations by invited guests.
Tuohy, IMF's NE Regional Director of Support Groups,
We've hosted speakers physicians, nurses, a dietician, an
who traveled from Connecticut with her family to join the
attorney who have addressed the wide range of topics that
celebration.
concern our members," says Kim, "But we regularly make
time for open discussions. We are also very welcoming to
"Support group members provide invaluable help to one
newly diagnosed patients and their families. This is a very
another. But we can also do a lot in our local communi-
close-knit group of people who truly care about one another
ties to raise public awareness and money for research.
and encourage each other to never give up or lose sight of
Organizing a fundraising event really isn't as intimidating as it first seems, and it's
hope."
really worth the effort! We raised more funds than we thought we would, and the
mt
proceeds benefit both the IMF and the RIMMSG!" mt
Editor's Note: The Tennessee support group meets on the third
Thursday of each month at the Memorial Cancer Research
Editor's Note: The Rhode Island Multiple Myeloma Support Group meets on the first
Center. For more information, please contact Kimberly
Tuesday of every month. For more information please contact Carol Murray-Rossi at
Shank, RN (Oncology Education Nurse) at Kimberly_Shank@
marcar@gis.net.
memorial.org.
800-45-CURE(87)
17
Patient & Caregiver
a chance to Live
By William F. Wheeler Jr, MD
Iwasbornin1943inBlackville,SouthCarolina.Severeasthma
in childhood kept me confined to the house for months. Nine
hospitalizations and long, lonely, miserable nights sweating in
a hot steam tent -- a crib draped with plastic -- had taken their
toll. Worst of all, I had not been able to go outside to play with
my friends.
One night, after mother tucked me into bed and left, my chest
constricted as if strong metal bands were tightening around it. It
took all my strength to barely move air in and out. I rolled closer
to the copper kettle that was belching clouds of white steam
and tried to call out but it was too late. There was not enough
breath to make a sound. Tight with panic, my lungs closed off
completely. I quit struggling and gave up.
I knew I was dying. Anger suddenly raged through my body,
anger that I would never go out and play again, never run in
the yellow fields of grass behind the house, never smell the
flowers that grew in our garden, or marvel at the secret world of
ants and butterflies. These were great mysteries of nature that I
loved, and I felt cheated, angry with God for taking me away.
There had never been a stated purpose in my travels -- no endangered
As the room turned grey, arms reached out and picked me up, the touch
species to study, no vanishing culture to document, no goals to strive for
filling my body with overwhelming warmth and an indescribable feeling of
or mountains to climb. I had no desire to test myself in any way, no desire
love. The anger vanished. As I was taken toward the ceiling, I looked down
to pit myself against the forces of nature. I was not an anthropologist,
at my lifeless body, and I knew I was going to a better place. Then a voice
professional adventurer, photographer, writer, or even physically qualified
filled the room: "Put him back." Instantly, I was back in bed, breathing.
for wilderness travel. Some deep-seated instinct was guiding me.
As a child, I regarded this as a normal experience. I never even thought to
Each contrasting landscape desert, rainforest, grasslands forged a
tell anyone about it until recently. Whether it was real or the delusion of a
spiritual awareness all its own. Each tribe encountered left me with a
dying child I do not question, for that experience has been a guiding force
greater understanding of our common humanity. Finally, alone in the
in my life ever since that night. Since that moment, I have regarded life as a
wilderness, I came closer to God. And that, I discovered, was what I was
precious gift, each day to be lived fully and never taken for granted.
searching for all along.
To experience as much of life as possible, I rushed the milestones of
After 24 trips to the continent, the more than 5000 photographs and
life. I quit high school for college and received my medical degree from
videos and 400 artifacts collected during my travels are in the permanent
Duke University at the age of 23, completing an internship in surgery at
collection of the Smithsonian Institution's National Museum of Natural
University of California San Diego and a specialty degree in anesthesiology
History. My photographic book, Efe Pygmies, Archers of the African
at the Massachusetts General Hospital in Boston. But I dreamt of faraway
Rainforest, was published in 2000 by Rizzoli. My next book, ALIVE: On
cultures and civilizations.
Foot in the Sahara, Congo, and Rift Valley, chronicles my 20 years of travel
with nomads in Africa's most remote and least touched wilderness. And
Africa was a natural choice for me. A continent of great extremes, it con-
there have been many more unwritten adventures in Africa, the Himalayas,
tains the world's largest desert and vast untouched rainforests. Human
and South Sea islands.
life began in Africa, and only there is it possible to sense what it was like
for the first people to live among the exotic animals found nowhere else
Then, at 62 years old, I was told I had myeloma. With chemotherapy, I was
on earth. So, after practicing medicine for 12 years, I bought a Land Rover
given a 40% chance of surviving one year. My immediate reaction to this
and began traveling through Africa.
unexpected news was a warmth that spread over my body, the same com-
forting sensation experienced in my childhood vision. My first thought
After adding 40,000 miles to the odometer, I retired the Land Rover and
was how thankful I am to have solidified my relationship with God; my
began exploring the most untouched wilderness on foot, alone except for
second, how lucky to have fulfilled my dreams.
a nomad guide whose language I was not able to speak. Each journey was
self-organized in the style of 19th century explorers supplies carried on
I always begin my day with a prayer. I thank God for another wonderful
the backs of porters or pack animals, no GPS, no emergency backup, no
day, for another chance to give love and compassion to everyone I meet. I
radio, not even a watch. Nothing to remind me of my own civilized world.
am grateful for having been given the chance to live. mt
I kept detailed journals, with sketches and hand-drawn maps. There was
Editor's Note: Dr. Wheeler's photographs have appeared in books, maga-
adventure: Balal the Tuareg who stole my camel at sword point, abandon-
zines, and calendars. He has acted as consultant and ground liaison for
ing me in the desert; the lion that killed my riding horse; the Cape buffalo
the Discovery Channel. In 1998, Dr. Wheeler established the Efe Pygmies
Medical Project to provide basic medical care in the Congo.
that broke my companion's spine.
18
www.myeloma.org
Special Event
what a night!
Report from the IMF's 16th Anniversary Gala
By Sara Israel
On Saturday, October 21st, 250
Bank On A Cure® research initiative, and the dedi-
guests joined together for the
cated team of scientists behind these successes.
IMF's 16th Anniversary Gala. The
evening's festivities took place at the
Dr. Brian Durie, IMF Chairman of the Board, and
beautiful Regent Beverly Wilshire
Susie Novis, IMF President, took the podium to
Hotel in Beverly Hills.
further extol the accomplishments of Bank On A
Cure. Dr. Durie recalled the days when this major
The IMF's annual gala has always
research initiative was "merely a glint in Susie's eye"
been an important, spirited, and
and spoke passionately about the project's many
successful fundraising event for the
collaborators who have selflessly given their time
foundation, and this year's was no
and talents to achieve a common goal. Ms. Novis
exception. Due in large part to the
extended that compliment to encompass everyone
evening's generous sponsors, includ-
in the room, and acknowledged the evening's true
ing the Presenting Sponsors, Celgene
heroes: the myeloma patients around the world
Corporation
and
Milliennium
who conduct themselves with dignity, a sense of
Pharmaceuticals, this year's gala
Dr. Brian Durie and Susie Novis
humor, and tremendous courage.
raised vital funds for myeloma
research and essential programs, while encouraging attendees to
During a delicious dinner, IMF Board
celebrate the myeloma community's accomplishments.
Member Benson Klein introduced Dr.
Jerome Zeldis, who received the evening's
The evening began with a lively cock-
IMF Visionary Award. As Chief Medical
tail hour. Elegantly dressed revelers
Officer of Celgene Corporation, Dr. Zeldis
visited with old friends and made
has been a champion of Bank On A Cure
new ones, all the while vigorously
since the beginning, and has supported the
bidding on the fantastic items in the
initiative's col aborative research efforts
evening's silent auction, ranging from
in a multitude of ways. In addressing the
fine jewelry to concert tickets to ter-
gala's crowd, Dr. Zeldis spoke passionately
rific trips. Many diligent guests kept a
about his devotion to developing drugs
close eye on the objects they desired
and improving treatments for myeloma
as the bidding progressed.
patients, and fondly of his affiliation with
Host Robin Leach
the IMF.
When the doors for dinner opened,
Robin Leach, host of Lifestyles of the Rich and Famous and a good
After honoring Dr. Zeldis, Dr. Durie and
friend of the IMF, was there to greet everyone in the beautifully
Dr. Robert Kyle, Chairman of the IMF
decorated ballroom. Mr. Leach set the festive tone and introduced
Scientific Advisory Board, introduced the
the primary focus of the celebration -- the successes of the IMF's
Dr. Jerome Zeldis
members of the Bank On A Cure research
Members of the Bank On A Cure Team: Dr. Hervé Avet-Loiseau, Dr. Hartmut Goldschmidt, Dr. Gareth Morgan,
Dr. Dalsu Baris, Antje Hoering, and Dr. Brian Van Ness
Continues on page 20
800-45-CURE(87)
1
Special Event
WHAT A NIGHT! -- continued
team. The IMF community was thrilled that so many of these
important honorees could be there in person, including Dr.
Hervé Avet-Loiseau, Dr. Dalsu Baris, Dr. Hartmut Goldschmidt,
Dr. Antje Hoering, Dr. Gareth Morgan, and Dr. Brian Van Ness.
Each of these honorees spoke eloquently about what Bank On
A Cure and their work with the IMF means to them as crusaders
fighting myeloma.
All of the evening's guests were called upon to participate
when Mr. Leach spearheaded the gala's live auction and intro-
duced auctioneer Mr.
Grant Snyder. Enthusiastic
bidders won exotic
Benson and Carol Klein, Dr. Robert Kyle, and Dr. Brian Durie
Ronny Mosston
of Millennium Pharmaceuticals
Susie Novis and Stephanie Gallagher
vacations, once-in-a-lifetime experiences, and two adorable puppies--
both of them striking "fetching" poses for the crowd and taken home that
Lindsay and Kent Luke
very evening by grateful and loving new owners.
The gala was also the culmination
of the IMF's opportunity drawing,
with al proceeds funding Bank
On A Cure. Ms. Ronny Mosston,
Director of Patient Advocacy for
Mil ennium Pharmaceuticals, was
the lucky winner, and will soon be
off on a first-rate trip to Barcelona,
Spain.
Dessert was served (and devoured),
but no one wanted to leave. The
band, Ric Howard Music, kept play-
ing, and guests kept dancing.
Dr. Van Ness, co-chairman of the
Bank On A Cure initiative and
(top row, L to R) Stephanie Gallagher, Igor Sill, Cynthia Sill, Dr. Robert Vescio, Elana Farquharson,
a member of the IMF's Scientific
Dr. Robert Kyle, Susie Novis;
Advisory Board, reflected on the
(second row, L to R) Mark DiCicilia, Donna Botherton, Dr. Brian Durie, Robin Leach
evening. "When patients, friends,
and staff of the IMF show up for a fundraising gala, it always feels like
mission we are all working toward, work we hope will culminate in a cure
family supporting a cause," he said. "But the IMF accomplishes this not
for myeloma." mt
only through a night of fun and recognition, but also through the serious
0
www.myeloma.org
Investing in the Future
MYELOMA TODAY IN CONVERSATION WITH GARY TAKATA
Myeloma Today's new section "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.
Myeloma Today: Please tell us a little
Please tell us about your involvement
about your background.
with the IMF.
Gary Takata: I worked in the brokerage busi-
After the pelvis was irradiated, I did not
ness on Wall Street. After I left Wall Street, I
require further cancer treatment for almost
founded several companies in the medical
two years. I returned to being fairly active
business. In May of 1983, I founded OSI
I was back to playing tennis! and my
Pharmaceuticals Inc., a drug discovery com-
life seemed as normal as it was before the
pany. The Chairman of the Scientific Advisory
diagnosis. At that time, I didn't have a need
Board was James D. Watson, co-winner of
for the patient support that the IMF provides,
the Nobel Prize in 1962 for his landmark
but I understood and appreciated the value
discovery of the double-helix structure of
of the Foundation's services. So, in 1997, my
DNA. Today, OSI Pharmaceuticals has several
wife Louise and I made our first contribu-
FDA-approved drugs, including one that was
tion to the Foundation's scientific activities
approved last year for cancer. The company
by donating stock. In addition, since my
has projected annual sales of $600,000,000.
business career has been focused on drug
discovery, this was one way for us to further
Under what circumstances were you
scientific research that benefits the myeloma
diagnosed with myeloma?
community. In 1999, we financed the IMF
I was an avid tennis player -- you would have
Virus Symposium that took place at the VIIth
found me on the court almost every day. In
International Multiple Myeloma Workshop
1995, I began experiencing pain in my pelvis.
in Stockholm, Sweden. This satellite session
One day in 1996, the pain became excruciat-
featured IMF Scientific Advisors and several
ing. I thought that this was due to a sciatic
world-renowned researchers, including Prof.
nerve condition, so I went to see a neurolo-
Luc Montagnier of the Institute Pasteur in Paris (who first discovered the
gist. MRI imaging revealed a solitary plasmacytoma on my left pelvis, and
AIDS virus). It was very exciting to be present during discussions between
further testing confirmed the diagnosis of multiple myeloma.
leaders in the field of myeloma. In 2004, Louise and I underwrote the
How did you become involved with the IMF?
IMF Scientific Advisors Retreat in Bermuda, which focused on molecular
testing and clinical trials. We also support the Bank On A Cure initiative.
My oncologist mentioned that I should meet Mike Katz, another myeloma
We believe that this IMF project will lead to a greater understanding of
patient he was treating. One day, Mike and I ended up seated next to
myeloma, as well as the development of individualized treatments that
each other while receiving infusions of Aredia®. He told me about the
take into account genetic variability, and drug toxicity and efficacy.
IMF and about the work that Susie Novis and Dr. Brian Durie were doing
to benefit myeloma patients. Mike and I became friendly, and I became
Why have you chosen to support the IMF?
involved with the IMF.
Contributing to the IMF is very worthwhile for all of us who have been
affected by myeloma. It has meant a lot to me to see the strides that
have been made in the years since my diagnosis. People who are being
diagnosed now can look forward to a longer and better quality of life
than those of us who were diagnosed years ago. I am an 11-year myeloma
survivor and the disease is beginning to take its toll, but the scientific and
clinical progress is helping me lead a relatively normal life. And the IMF's
unparalleled patient services programs have made a significant difference
in my quality of life. In particular, the Hotline and the online chat group
have been a great source of support and information. IMF's patient edu-
cation has taken on even greater importance with the availability of the
newer drugs and combinations of new and old drugs. Soon, myeloma may
become a manageable chronic disease. My outlook is that I am LIVING
with myeloma. My support of the IMF has helped the IMF support me,
and others like me, in times of need. I would like to encourage others to
contribute to the IMF in support of our common cause. mt
Gary and Louise Takata with Susie Novis
800-45-CURE(87)
1
Member Events
IMFERS RAISE FUNDS TO BENEFIT MYELOMA COMMUNITY
By Suzanne Battaglia
IMF represented on Celebrity Jeopardy!
says Elise, "Some of the donations were so generous that we had to keep
A winner of 27 Emmy awards since its debut in
raising our fundraising goal!" Scott adds, "Running the marathon was an
1984, Jeopardy! celebrated its 5,000th episode
amazing experience I will never forget. I am very impressed with Team
milestone with a two-week television event
Continuum and the work they do, and am honored to have been able to
featuring 30 stars competing for at least $1
help the Team and the IMF."
million to be donated to their special causes.
Walk for Myeloma
Celebrity Jeopardy rolled out the red carpet to
On October 15, 2006, participants
actors, newsmakers, and pop culture icons at
in Walk for Myeloma circled Lake
New York's historic Radio City Music Hall. Each
Oseola at the University of Miami
celebrity participant received $25,000 for his or
in support of the myeloma commu-
her charity of choice, while each show's victor
nity and the IMF. This second annual
won $50,000 for charity.
event was once again spearheaded by
On November 21, 2006, actor/writer Michael
Denise Vidot, whose father was diag-
McKean appeared on Celebrity Jeopardy on behalf of the IMF. Michael
nosed in 2004. Denise, a junior at the
played Lenny on Laverne & Shirley and has written and/or acted in many
University of Miami, is committed not
movies, such as "This Is Spinal Tap," "For your Consideration," "A Mighty
only to raising funds for research but
Wind," and "Best in Show." Michael's Jeopardy appearance was dedicated
also to promoting myeloma awareness in her community. For this year's
to the memory of close friend Lee Grayson.
event, Denise secured the involvement of several student organizations
IING New York City Marathon
and the turnout for the Walk more than tripled from last year to a total
of 250 registrants. The Walk has now become the Annual Philanthropic
On November 5, 2006, IMF Hotline coordinator
Event for the Beta Sigma Chapter of Lambda Theta Alpha Latin Sorority
Paul Hewitt ran the New York Marathon to raise
Inc. Congratulations, Denise!
money for Team Continuum. The Team was cre-
ated by myeloma patient
Gary C. Heuer Jr. Memorial Golf Tournament
Paul Nicholls to ease the
On September 9, 2006, the 5th Annual Gary C. Heuer Jr. Memorial Golf
burden that cancer thrusts upon patients and
Tournament was held in Pavilion, NY. Players gathered at the Davis
their families. This was Paul's first marathon
Countryside Meadows for the shotgun start of the exciting 18-hole round
and he spent four months training for the event.
of golf. Refreshments were provided on the course, and lunch was served
"The whole experience was magical," says Paul,
at turn. Later, a steak dinner awaited players and non-golfing event sup-
"The run itself was grueling, but the good will
porters, and door prizes were distributed to holders of winning tickets.
and support the Team received was electrify-
Our thanks to all the sponsors, golfers, and family and friends who con-
ing. Whatever pain I experienced during the
tributed to the success of this event. Special thanks go to Nancy Heuer,
26.2 mile run doesn't begin to compare with
who established this tournament and who does such a superb job organiz-
myeloma patients' daily rigors. By running the
ing it every year.
New York Marathon, I was able to accomplish a
life-long goal while raising money for a cause I believe in. I am so grateful
Cents for Cells
to the IMF, Paul Nichols, and Team Continuum for facilitating this amazing
IMFer Beth Morgan is about to undergo a stem cell transplant, so she
event, and for raising funds to provide immediate help to the patients who
is asking family, friends, and the community to help her help the IMF
need it most."
by raising a penny for each stem cell that will be collected. That's about
15,000,000 cells! Won't you please help Beth reach her goal by supporting
Scott Segar first got involved with run-
the Cents for Cells campaign? A donation of $100 represents 10,000 stem
ning when he joined a cross-country
cells! "Like many other patients, I feel the need to do something to help
team in high school. After graduation,
win the war against myeloma. And I can't think of a better way aside
he continued to run for exercise. Seven
from discovering a cure! to help my community other than to support
years ago, he ran his first marathon in
the IMF." Please visit www.centsforcells.com for more information.
Hartford, Connecticut. Another marathon
on Cape Cod followed. Then, in August of
Join Us
2006, Scott's wife Elise received a phone
We are very grateful to all IMFers who contribute their time, imagination,
call from her aunt, Susie Novis. The IMF
and hard work to benefit the myeloma community. The IMF is commit-
was looking for runners to join Team
ted to working with you to continue to raise community awareness and
Continuum in raising funds to benefit
funding for myeloma educational and research. Please join us in working
cancer patients and their families. Before
together toward our common goal... a cure. Our FUNdraising program
long, Scott embarked on a demanding training regimen, fitting in practice
provides you with the tools, assistance, and expertise to make your
runs between his job as a West Hartford police officer and the busy life of
event a success. No idea is too large or too small. For more information,
a young family. While Scott focused on training, Elise took on the task of
please contact me, Suzanne Battaglia, at SBattaglia@myeloma.org or call
fundraising. "We reached out and so many people stepped forth to help,"
800-452-CURE (2873). mt
www.myeloma.org
2007 IMF Calendar of Events
Feb
2324 LosAngelesP&FSeminarLosAngeles,CA
June
15 ASCOChicago,IL
Mar
2324 HoustonP&FSeminarHouston,TX
810 ECOGWashnington,DC
710 EHAMeeting,Vienna,AUSTRIA
April 2427 ONSLasVegas,NV
7 KyleAwardDinnerVienna,AUSTRIA
May
26 SWOGHyat Regency,Chicago,IL
2530 XIthInternationalMyelomaWorkshop,KosGREECE
July
2728 TeaneckP&FSeminarTeaneck,NJ
Other events/meetings will be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or call 800-452-CURE (2873).
IMFLatin America, IMFJapan and IMFIsrael events are not included above.
The upcoming IMF Patient & Family Seminars in Los Angeles and Houston are expected to be sold out. Reservations
are taken on a first come, first served basis. Don't miss your opportunity to participate in these educational and empowering events.
To reserve NOW, please call 800-452-CURE (2873) or register on the web at www.myeloma.org.
News & Notes
Imagine Moving Forward is the theme of the IMF's myeloma
Planned Giving
bracelet. Wear one in honor, celebration, or in memory of
There are many ways to support the
· Term-of-year Trusts
a loved one. When
IMF. It is important that you find the
· Charitable Lead or
people
ask
you
approach that best meets your needs
Remainder Trusts
about it, you'll have
and fulfills your wishes. In order to
a perfect opportu-
help start the thought process for
Estate and gift planning requires
nity to spread the
your gift planning, we suggest the
thoughtful consideration and discus-
sion. To learn more about any of the
word about multiple
following forms of giving:
suggestions listed above, or other
myeloma.
These
· Bequests in your Will or Trust
forms of giving that might inspire you,
bracelets are only
· Gifts of Securities (Stocks)
please contact Susie Novis at 800-
$1 each in sets of
452-CURE (2873) or snovis@myelo-
10. Youth bracelets
· Gifts of Real Estate
ma.org. We also invite you to visit
are now available, so
· Gifts of Life Insurance
our website at www.myeloma.org for
everybody in your family who has been touched by myeloma
· Annuity Trusts
a more detailed explanation of these
can wear one! Order bracelets online at www.myeloma.org,
· Unitrusts
giving plans.
or contact Suzanne Battaglia at SBattaglia@myeloma.org or
800-452-CURE (2873).
International Myeloma Foundation
NON-PROFIT
12650 Riverside Drive, Suite 206
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
U.S.A.
www.myeloma.org
PAID
N. Hollywood, CA
(800) 452-CURE (2873)
PERMIT NO. 665
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Foundation
yelomaM
International
©2006,
U.S.A.in
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
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