Myeloma
Today
FALL 2007
Volume 7 Number 4
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Scientific & Clinical News
Supportive Care
Also in this issue...
Dr. Antonio P. Palumbo, IMF
Ginger Love, RN, discusses n Dear Reader by IMF president
Scientific Advisor, discusses his
peripheral neuropathy, damage
Susie Novis PAGE 3
interests in myeloma research,
to the peripheral nervous sys-
his work with the IMF and with
n Letters to the IMF PAGE 3
tem, which can be caused by any
GIMEMA, the Italian myeloma
of a variety of factors, including
n Nurse Leadership Board
network. He also shares his
injury, inflammation, and the dis-
activities update PAGE 10
thoughts on defibrotide, an anti-
coagulant currently not approved in the USA but
ease of myeloma itself or several approaches to its
used in a number of other countries.
treatment.
PAGE 4
PAGE 11
Dr. Robert A. Kyle, Chairman of
Patient & Caregiver Stories
the IMF Scientific Advisory Board
and member of the Board of
The Tuohy Family com-
Directors, talks about the evolu-
pletes the Summer 2007
tion of myeloma diagnosis and
Myeloma Mobile journey
n International Affiliates, AMEN celebrates
treatments, shares his thoughts
to educate and empower
second anniversary PAGE 14
on what we are likely to see in
patients and their families
n Support Groups from New Jersey and California
the future, and summarizes the latest information
in local communities across
share their stories PAGE 15
about MGUS and smoldering myeloma. PAGE 5
the United States, both in
Prof. Jean-Luc Harousseau
n IMFers raise funds to benefit the myeloma
, IMF
major cancer clinics and
community PAGE 18-21
Scientific Advisor and founding
smaller support groups.
member of Intergroupe Français
PAGE 12
n News & Notes PAGE 21
du Myélome and Groupe Ouest-
Est Leucémies Aigues et Maladies
Diana Marquise, a nurse and a 6-year breast cancer n Spotlight on Advocacy PAGE 22
du Sang, tells the story of the
survivor, tells the story of her seemingly insur-
n Calendar of events BACK COVER
highly successful French myelo-
mountable diagnosis with smoldering myeloma
ma cooperative group and gives a brief overview of
and how she has coped during her first year with
Special Events
its recent and current activities. PAGE 7
this disease. PAGE 16
Brian G.M. Durie
Read
about
the
recent
, IMF Chairman
Cindy & Bob Feltzin, who are making a profound
Concert For A Cause
oftheBoardandScientificAdvisor,
investment in the myeloma community, talk about
, headlined
encapsulates the recent recom-
why and how they have chosen commit to the fight
by Spinal Tap to
mendations of the International
against myeloma by fund-
raise funds to
Myeloma Working Group on the
ing myeloma research
benefit
the
prevention of blood clots associ-
and education initiatives,
IMF,
and
ated with the use of thalidomide
and leading a local sup-
the upcoming evening of com-
or lenalidomide. PAGE 9
port group. PAGE 17
edy Celebrating Peter Boyle.
Michael S. Katz,IMFDirector,pro-
PAGE 18-19
vides an update from the recently
established US Myeloma Forum, a
Looking for a LocaL myeLoma support group?
committee of the world's leading
multiple myeloma experts. The
If you are interested in joining an existing group please access
Forum has reached agreement
the website at www.myeloma.org "Finding Support"
on a clinical trial for treatment of
newly-diagnosed patients. PAGE 9
or call the IMF at 800-452-CURE (2873).
This issue of Myeloma Today is supported by Celgene Corporation, Mil ennium Pharmaceuticals, and Ortho Biotech.
International Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Benson Klein
Dr. Edith Mitchell
Susie Novis
E. Michael D. Scott
Michael B. Bell
Dr. Robert A. Kyle
Dr. Gregory R. Mundy
Matthew Robinson
R. Michael Shaw
Mark DiCicilia
Isabelle Lousada
Charles Newman
Richard H. Saletan
Igor Sill
Michael S. Katz
Allan Weinstein
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Daniel Bergsagel, CANADA
Ian Franklin, SCOTLAND
Ian MacLennan, ENGLAND
Y.C. Chen, REPUBLIC OF CHINA
Tadamitsu Kishimoto, JAPAN
James S. Malpas, ENGLAND
Scientific Advisors
Raymond Alexanian, USA
Rafael Fonseca, USA
Linda Pilarski, CANADA
Kenneth C. Anderson, USA
Gösta Gahrton, SWEDEN
Raymond Powles, ENGLAND
Michel Attal, FRANCE
Morie A. Gertz, USA
S. Vincent Rajkumar, USA
Hervé Avet-Loiseau, FRANCE
John Gibson, AUSTRALIA
Paul Richardson, USA
Dalsu Baris, USA
Hartmut Goldschmidt, GERMANY
Angelina Rodríguez Morales, VENEZUELA
Bart Barlogie, USA
Jean-Luc Harousseau, FRANCE
Donna Reece, CANADA
Régis Bataille, FRANCE
Joyce Ho, AUSTRALIA
David Roodman, USA
Meral Beksac, TURKEY
Vania Hungria, BRAZIL
Jesús San Miguel, SPAIN
William Bensinger, USA
Sundar Jagannath, USA
Orhan Sezer, GERMANY
James R. Berenson, USA
Douglas Joshua, AUSTRALIA
Kazuyuki Shimizu, JAPAN
Leif Bergsagel, USA
Michio M. Kawano, JAPAN
Chaim Shustik, CANADA
Joan Bladé, SPAIN
Henk M. Lokhorst, THE NETHERLANDS
David Siegel, USA
Mario Boccadoro, ITALY
Heinz Ludwig, AUSTRIA
Seema Singhal, USA
J. Anthony Child, ENGLAND
Jayesh Mehta, USA
Alan Solomon, USA
Raymond L. Comenzo, USA
Håkan Mellstedt, SWEDEN
Pieter Sonneveld, THE NETHERLANDS
John Crowley, USA
Giampaolo Merlini, ITALY
Andrew Spencer, AUSTRALIA
Franco Dammacco, ITALY
Gareth Morgan, ENGLAND
A. Keith Stewart, USA
Faith Davies, ENGLAND
Gregory R. Mundy, USA
Guido J. Tricot, USA
Meletios A. Dimopoulos, GREECE
Amara Nouel, VENEZUELA
Benjamin Van Camp, BELGIUM
Brian G.M. Durie, USA
Martin M. Oken, USA
Brian Van Ness, USA
Hermann Einsele, GERMANY
Antonio Palumbo, ITALY
David Vesole, USA
Dorotea Fantl, ARGENTINA
Jan Westin, SWEDEN
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www.myeloma.org
P
Internationallaceholder
Myeloma Foundation
Dear Reader,
The Fall edition of Myeloma Today is, in a way,
been published in prestigious journals such as
a paradox, as Fal usual y signifies endings,
Journal of Clinical Oncology, British Journal of
and this issue is about new beginnings. It's a
Hematology, The Mayo Clinic Proceedings, and
new beginning because this is the time of year
Leukemia. In addition, their numerous abstracts
when the IMF awards our research grants, and
have been accepted at major medical meet-
research as we all know is the path forward a
ings such as American Society of Hematology
new start.
(ASH) and the International Myeloma Workshops
Research has provided us with novel therapies
(IMW). The importance of their work cannot
that are changing the lives of thousands of
be underestimated, as it has framed the current
patients globally. It is guiding the development
approach to myeloma treatment and manage-
of the next generation of drugs that will lead to
ment in the era of novel therapies.
a cure.
The US Myeloma Forum was recently established
The IMF believes in funding a wide range of research that includes
to bring together key U.S. opinion leaders to form a coalition whose
both lab and clinical projects. Our research goal is "to support
goal is to work collaboratively to bring focus to projects, and to
research that will have the most immediate benefit for patients, while
reduce duplication of efforts and dilution of valuable resources. Like
working toward prevention and a cure." That means we support lab
coalitions in Europe, the US Myeloma Forum is working on projects
research with our signature project Bank On A Cure® and through our
to ensure that drugs make their way through clinical trials and on to
Junior and Senior Research Grant program.
FDA approval with speed and efficiency. The Forum's first meeting,
held in April of 2007, has already produced results a collabora-
Over the past 12 years, the IMF has awarded 65 research grants to
tion has been formed between Southwest Oncology Group (SWOG),
investigators around the world. A goal of our grant program is to
East Coast Oncology Group (ECOG), and Cancer Therapy Evaluation
not only fund research but to also bring new people into the field of
Program (CTEP)!
myeloma. The IMF grants provide seed money for innovative projects.
Ultimately, these smaller grants are critical because their recipients go
The IMF has invested wisely, which has allowed modest funds to reap
on to apply for multi-million dollar government grants. I am happy to
huge benefits. We have been able to move research forward through
note that most of the researchers the IMF has funded have stayed in
a variety of innovative projects. Always true to our mission, we put
the field and have gone on to publish over 100 papers in important
patients first, empowering them through our educational programs
peer reviewed journals. In addition to such grants, the IMF funds
and caring for them with equally important supportive programs. We
research through two other very important groups:
take care of patients today so that they can be here tomorrow to ben-
efit from the newest treatments and, hopefully, the cure.
The International Myeloma Working Group was formed in 2000.
Initially, it was a collaboration of about 25 experts. Today, 90 myeloma
Warm regards,
experts contribute to multiple ongoing projects. They have been very
Susie Novis
prolific and have published six consensus guideline reports that have
Letters to the IMF
I am an American living abroad. In the past four months, I lost two people
gave me hope. I no longer feel that I must stand on the sidelines watching
in my life to cancer (not multiple myeloma), and now I am dealing with
my husband's struggles. I now feel that there are things I can do to help
my husband's myeloma diagnosis. My husband chooses not to learn about
him fight myeloma.
the disease, so the task of doing research has fallen to me. Thanks to the
On our new journey, one of the things that have struck me is how myelo-
internet, information about myeloma is more accessible now then ever
ma has touched so many lives. We are not alone. The support, education,
before, and we are able to communicate, exchange ideas and experiences,
and information that the IMF and its members, like Peter Tischler, provide
and support one another even over great distances.
to the patient and caregiver community has empowered me to really take
One Myeloma Today article has made a particularly positive impression
an active part in my husbands treatment and care. I thank your organiza-
on me. I found Peter Tischler's Living Successfully with Multiple Myeloma
tion and Peter for your positive contribution to our new perspective.
to be a concise but in-depth first-hand account of a disease that I am only
With appreciation,
now learning about. As a caregiver, I was so grateful to learn so much
Deborah Rosenloev
information. I had so many doubts about the future, and Peter's article
800-45-CURE(87)
Scientific & Clinical
myeLoma today in conversation with dr. antonio p. paLumbo
Please tell us a little about your background
evidence of thalidomide's effectiveness in elderly
and medical training.
patients. The group is preparing an update of
I was born in Torino, Italy. I received my medical
this study, which we hope to finish by the end of
degree from the Medical School of Torino, and
the year.
undertook both hematology and clinical oncology
The phase II study of the melphalan, prednisone,
specialty training at the Università di Torino. Then I
and Revlimid combination (MPR) closed about a
spent five years in the US, where I worked in molecu-
year ago. We observed a better safety profile with
lar biology at the Wistar Institute of the University of
the use of MPR than with the use of MPT. In particu-
Pennsylvania. In 1985, I returned to the Università di
lar, peripheral neuropathy was not a problem with
Torino where I began my work in multiple myeloma.
MPR. And, with the use of aspirin as prophylaxis
Currently, I am Associate Professor of haematology.
for deep-vein thrombosis (DVT), the incidence
Also, since 2000, I have headed the myeloma unit at
was lowered to approximately 5%. Both response
our department of oncology.
rate and progression-free survival, while not com-
How did you become involved with the IMF,
pared in a randomized fashion, demonstrates the
eventually joining its Scientific Advisory Board?
improved efficacy of MPR as compared to MPT.
My initial involvement with the IMF was due to my
Antonio P. Palumbo, MD
At the 2007 meeting of the American Society
colleague Dr. Mario Boccadoro, who has enjoyed a
Università di Torino
of Clinical Oncology (ASCO), GIMEMA members
long-standing friendship with Dr. Brian Durie and
Torino, Italy
presented an abstract on the factors predictive of
has been a member of the IMF and its Scientific Advisory Board for many
outcome in relapsed/refractory myeloma patients treated with VELCADE,
years. Dr. Boccadoro and I organize IMF seminars and conferences in our
melphalan, prednisone, and thalidomide (VMPT). This is the first sched-
country. We are currently working on preparing recommendations on
ule combining these four drugs at the same time. The peculiarity of this
the managements of side effects in myeloma patients being treated with
schedule is that thalidomide is lowered to 50mg and the VELCADE dose is
thalidomide or lenalidomide (Revlimid®). These guidelines should be
lowered to a weekly infusion. From the safety point of view, the incidence
completed and published soon.
of peripheral neuropathy was the same as with MPT, so the findings were
very encouraging. From the efficacy point of view, VMPT significantly
What is your personal research focus in myeloma?
increased response rate and progression-free survival for patients with
My interests in myeloma include the efficacy of high-dose versus con-
relapsed disease.
ventional chemotherapy, as well as pathogenesis and new therapeutic
approaches to treating myeloma. The combination of newer agents such
What are the current activities of GIMEMA?
as bortezomib (VELCADE®), Revlimid, and thalidomide with melphalan
Members of GIMEMA are currently working on three major trials. One
and prednisone (MP), the standard of care in Europe, is the current focus
major trial is being led by the Università di Torino, evaluating VELCADE,
of our work. These combinations have significantly improved the response
melphalan, prednisone (VMP) versus MPV plus thalidomide (VMPT).
rate induced by new drugs. We are also working to improve the safety
Another trial, led by Dr. Michele Cavo (Università di Bologna), is com-
profile of such regimens.
paring the combination of thalidomide plus dexamethasone (thal/dex)
You are one of the founders of the Italian myeloma network,
to thal/dex plus VELCADE as induction treatment in younger myeloma
GIMEMA. Please tell us about it.
patients prior to undergoing autologous transplantation.
GIMEMA (Gruppo Italiano Malattie Ematologiche dell'Adulto) is a joint
The third trial is led jointly by centers in Torino and Bologna. This study
venture between Italy's two major myeloma groups, one in Torino and the
is comparing three different approaches (aspirin, low fixed-dose warfa-
other in Bologna. We joined our efforts to form a unique myeloma group
rin, low-molecular-weight heparin) for the prophylaxis of thrombosis in
for our country. GIMEMA covers almost 90 hematology centers across
patients receiving thalidomide as frontline therapy at diagnosis. The study
Italy. More information about GIMEMA can be found at www.mieloma.it.
is accruing both younger and older patients. An abstract of this study was
What are some of the group's past accomplishments?
presented at the annual meeting of the American Society of Hematology
(ASH) in December of 2006.
Between January 2002 and May 2005, GIMEMA conducted a multi-insti-
tutional phase III clinical trial of newly diagnosed myeloma patients
What has been your experience with defibrotide?
who were older than age 64 or not medically able to undergo stem cell
Defibrotide is an anticoagulant currently not approved in the USA but
transplantation. The patients were randomly assigned to receive either MP
used in a number of other countries. Its mechanism of action seems to dis-
alone or in combination with thalidomide (MPT). Data analysis showed
rupt the attachment of plasma cells to stromal cells and to interfere with
that patients whose treatment included thalidomide did significantly bet-
tumor growth. The hypothesis of using defibrotide in myeloma is based
ter than the comparison group. These results provided the first definitive
on laboratory studies in mouse models, particularly in cultures containing
Continues on Page 8
4
www.myeloma.org
Scientific & Clinical
myeLoma today in conversation with dr. robert a. kyLe
When and how did you become involved in the
currently in the development pipeline will come to
field of myeloma?
represent significant advances, there are a dozen or
I became involved with myeloma when I was a medi-
so agents that look promising at this time. I suspect
cal resident, looking at serum protein electrophoretic
that these new drugs will be utilized in combination
patterns of our hospitalized patients. I showed what I
with the novel agents being used in myeloma treat-
had observed to the attending consultant, and asked
ment today. At this point, we should not in any way
him what the patterns meant. He said he didn't know
limit the scope of our research. We need to keep our
very much about them because the test was new
eyes open and be observant, and to take advantage
at the time, and he encouraged me to review the
of every new piece of information. It is even con-
experience of the Mayo Clinic. I reviewed over 6,000
ceivable that the information we seek is already out
serum protein electrophoretic patterns and found
there and we simply need to put the pieces of the
that there were patients who had large spikes in their
puzzle together in order to significantly advance the
patterns, and that those patients usually had mul-
field of myeloma.
tiple myeloma, Waldenstrom's macroglobulinemia,
Please tell us about your experience with
or primary amyloidosis. This was before immuno-
MGUS.
electrophoresis or immunofixation was available, so I
Robert A. Kyle, MD
Monoclonal gammopathy of undetermined signifi-
developed a formula using the height and the width
Mayo Clinic
cance (MGUS) is a term I coined in 1978. It was the
of the spike. A narrow spike represented myeloma,
Rochester, Minnesota
culmination of a long-term follow-up of 241 patients
macroglobulinemia, or amyloidosis. A broad spike
who had a monoclonal protein in their blood but no evidence of multiple
was due to an inflammatory or a reactive process, such as chronic infec-
myeloma, Waldenstrom's macroglobulinemia, or primary amyloidosis. All
tion or liver disease. A year later, Waldenstrom published his work on
of these patients were completely asymptomatic. MGUS patients have no
monoclonal and polyclonal gammopathies. When immunoelectrophoresis
hypercalcemia, renal insufficiency, anemia, or lytic bone lesions. Their
became available in the late 1960s, we developed a laboratory to utilize
M-spike is less than 3g/dL and their bone marrow contains less than 10%
it to identify the type of monoclonal protein. A decade later, we started
plasma cells.
using immunofixation.
The progression of MGUS to myeloma was recognized early in our studies.
How has the treatment of myeloma evolved over the years you've
Some of the MGUS patients I followed for a number of years developed
worked with this disease?
symptomatic myeloma or macroglobulenimia. The rate of MGUS progress-
The first treatment that was proposed for myeloma was a drug called
ing to myeloma is 1% per year. This statistic often gets MGUS patients
urethane. With this drug, a few patients had a reduction in their mono-
alarmed because their physicians tell them that they have a 25% chance of
clonal protein and bone marrow plasma cells. In 1958, a Russian physi-
developing myeloma. This is true if the patient lives for 25 years. Another
cian named Blokhin discovered what is currently known as melphalan
way to look at it is to tell the patient that there is a 99% percent likelihood
(Alkeran®). This drug has been used to treat myeloma in the US since the
of NOT progressing from MGUS to myeloma in the next year. However, a
early 1960s. In the 1970s and 1980s, there were many treatment combina-
patient remains at that risk, year after year and, over a 25 year period, 25%
tions of alkylating agents. Since the late 1980s, autologous stem cell trans-
of the MGUS patients progress to myeloma or a related disease.
plantation has been used in myeloma, initially utilizing stem cells from the
bone marrow. Subsequently it was discovered that a larger collection of
One important concept I'd like to get across is that, in general, we are
stem cells, and better engraftment, was possible by using peripheral blood
all at risk of developing many disorders and diseases. As we age, the
stem cells. It took a number of years for the kinks to be worked out. In the
risk increases. The median age of a person diagnosed with MGUS is 72
early days of transplantation for myeloma, the mortality from the proce-
years, and that patient might have any number of health issues arise in
dure itself was as high as 10% to 15%. Now the mortality is about 1%. By
subsequent years. According to our studies, a newly diagnosed 72-year-old
the late 1990s, thalidomide became part of available myeloma therapies.
MGUS patient has a 25% chance of progressing to myeloma by age 97, if
Early in the 21st century bortezomib (VELCADE®) was added to the list
he or she lives that long.
of myeloma treatments. For the past few years, we have also been using
What about smoldering myeloma?
lenalidomide (Revlimid®).
In June, the New England Journal of Medicine published a Mayo Clinic
What developments do you anticipate in the available myeloma
report on the risk of progression from smoldering to symptomatic myelo-
treatments?
ma. We concluded that the risk of progression from smoldering to active
I think that we are likely to see more new drugs with specific actions
myeloma is related to the proportion of bone marrow plasma cells and the
against various aspects of myeloma cell metabolic pathways. We are also
serum monoclonal protein level at the time of diagnosis. By definition, the
looking forward to more combinations of drugs that will interfere with
M-spike of a smoldering myeloma patient is greater than 3g/dL and/or the
myeloma cell proliferation. While it is impossible to say if any of the drugs
bone marrow contains more than 10% plasma cells. For the first five years,
Continues on Page 6
800-45-CURE(87)
5
Scientific & Clinical
DR. ROBERT A. KYLE -- continued from page 5
there is a 10% per year chance of developing myeloma. For the next five
County, while the national rate was only 0.8 per 100,000 for that same
years, there is a 3% per year chance. After 10 years, the rate of progression
time period. In 1977-1978, we found that the incidence of myeloma had
is 1.4% per year. Patients who have M-spikes greater than 3g/dL and more
fallen to 2.9 per 100,000. In 1991, the rate rose to 4.2 and we wondered if
than 10% plasma cells in their bone marrow are at greater risk of progress-
this represented an increase. But when we did an update a couple of years
ing to active disease than those with only one abnormality (M spike > 3
ago, we found that the incidence remained stable. We have looked back in
g/dL or plasma cells > 10%).
three-year increments for the past 56 years and there has been no statisti-
cally significant difference in the incidence of myeloma in Olmsted County
Is there anything you can share with us about the genetic aspects
over this period. The reason that the incidence rose slightly and then lev-
of myeloma?
eled off is that we have started looking for myeloma using improved and
If one were to perform conventional chromosomal studies on patients
modern diagnostic tools now available. There is also a greater awareness
with myeloma, about one third will have a cytogenetic abnormality, and
of this disease among physicians.
about 15% will have a chromosome 13q deletion. These patients generally
have a poorer prognosis than patients without such abnormalities.
While I believe that the incidence of myeloma has not changed in many
years, the prevalence of myeloma has increased. Besides the reasons
If one were to perform fluorescent in situ hybridizaton (FISH) on myeloma
already stated, the increased prevalence is due to more people living
patients, it is reported that 80% to 90% of patients will have an abnormal
longer remember, myeloma is a disease of older people and improved
result. I think that if one were to use sufficient probes, the number would
treatments that have myeloma patients living at least twice as long as they
be very close to 100%. FISH will detect chromosome 13q deletions in 40%
did 50 years ago. That alone doubles the number of patients living with
to 50% of patients. However, 13q- detected by FISH is not as important a
myeloma today.
prognostic factor as when it is detected by conventional cytogenetics.
Let's talk a bit about your work with the IMF. When Brian Novis and Dr.
If a patient has a 4;14 or 14;16 translocation, or a deletion of 17p, these
Brian Durie came up with the dream to start a foundation to help myelo-
would be poor prognostic features. However, translocation of 11;14 does
ma patients, the first call they made was to you. What do you remember
not seem to have an adverse effect on prognosis. The important point is
about the early days of the IMF?
that the genetic abnormalities seen with FISH are seen in patients with
MGUS almost as frequently as in patients with myeloma. The only conclu-
I have known Brian Durie since his residency at Mayo Clinic in the late
sion that one can draw from that fact is that the cytogenetic insult occurs
1960s. When I received a phone call from him and Brian Novis in the Fall
early in the course of monoclonal plasma cell disorders, and it takes mul-
of 1990, there were no national or international organizations in existence
tiple "hits" for a person to develop myeloma.
to serve the myeloma community. The International Myeloma Foundation
was formed to fill that void. The IMF was formally incorporated in October
What is the current focus of your work in myeloma?
1990. Shortly thereafter, at the annual meeting of the American Society of
My major interest in recent years has been MGUS and smoldering myelo-
Hematology (ASH), I met in person with the two Brians to continue our
ma. We are looking at the familial aspects of these disorders. There is a
discussions about the mission and activities of the IMF. I was happy to
hereditary element in myeloma and related plasma cell diseases. If you
collaborate with them and to become a founding member of the Board of
were to look at families of myeloma patients, statistically speaking, you
Directors and Chairman of the Scientific Advisory Board.
would be more likely to find a monoclonal protein in first-degree rela-
What are your thoughts about the IMF today?
tives of those persons than if you were to look at first-degree relatives of
The goals for the IMF that were laid out back in 1990 are very much what
people who do not have myeloma. I suspect that there are both genetic
they still are today. Obviously, the IMF has grown markedly over the last
and environmental factors at play here. As time goes on, we will surely
17 years. Its accomplishments are phenomenal. There are more monies
learn more about this.
being raised for research, and more patients reached with education,
But let me be clear that, even if your mother or father has been diagnosed
awareness, and support. There has also been a surge in the international
with myeloma, it would still be extremely unlikely for you to develop this
aspects of the IMF, with the Foundation achieving a broad international
disease. When patients ask me if they should have their children tested,
scope. I hope that in the future we will continue to increase our funding
I advise against this unless the family is participating in a research study.
of myeloma research, expand our patient programs, and make significant
There is no reason to increase their anxiety. Protein abnormalities are a
strides in battling this challenging disease.
part of aging, occurring mostly in older people. People diagnosed with
Editor's Note: Dr. Kyle has received countless awards, titles, and acco-
myeloma and related disorders are usually between the ages of 65 and 70.
lades. He is the most frequently requested speaker at IMF Patient & Family
Only 2% to 3% of newly diagnosed myeloma patients are under age 40.
Seminars around the world. Since 2003, the IMF has annually bestowed
Over the years, have you observed an increased incidence of
the Robert A. Kyle Lifetime Achievement Award to a physician whose work
myeloma?
against myeloma reflects the dedication and compassion inherent in Dr.
In Olmsted County Minnesota, where Mayo Clinic is located, we have
Mayo's vow. The IMF chose to name this award for Dr. Kyle, whose life and
looked at the population over the course of many years. From 1944 to
work give new meaning to these words. mt
1967, the incidence of myeloma was 3.1 cases per 100,000 in Olmsted
www.myeloma.org
Scientific & Clinical
ifm: the french myeLoma cooperative group
Myeloma Today in conversation with Prof. Jean-Luc Harousseau
Please tell us about the founding of the French
blood samples at my center in Nantes. This central-
myeloma cooperative group.
ized analysis allowed for good quality data for all
In 1989, the principal investigators for the three
our trials, and this became the second reason for
French cooperative groups working in multiple
our success.
myeloma at that time began joint cooperation. I
What about IFM's more recent activities?
was the leader of POF in the West of France, Michel
More recently, we became interested in translational
Attal led GEM (South), and Thierry Facon led GERM
research the "bench-to-bedside" translation of
(North). Other investigators from our three groups
research into clinical practice. We have also worked
also participated. This joint cooperation began the
with the International Myeloma Foundation on its
process that resulted in the founding of Intergroupe
Patient & Family Seminar program, helping French
Français du Myélome (IFM).
patients become better informed about their disease
What were the objectives of those early
and its treatment through interactive discussions.
cooperative efforts?
The IMF has done an excellent job with its patient
Our initial objective was to address questions about
education program, organizing one seminar per
myeloma treatment through randomized clinical tri-
year in Paris. The IFM has now taken the IMF's edu-
als. In 1990, with all three groups participating, we
cational initiative beyond Paris, organizing patient
designed three randomized studies. In order not to
Head of the Department
seminars throughout the rest of France. We also
duplicate efforts, we addressed three different ques-
of Clinical Haematology
conduct an annual nationwide doctor education
Professor of Medicine
tions about myeloma treatment. One of our studies
program, which is a video conference via satellite.
Nantes University Hospital
addressed the role of autologous transplantation,
Thanks to our sponsors, we have now initiated a
University of Nantes
which was a new approach to myeloma at the time.
Nantes, France
new program to make the satellite video conferenc-
That study, known as IFM-90, was the first random-
ing technology available to patients. In December
ized clinical trial comparing high-dose therapy (HDT) to conventional
2006, our first video conference for the patient community included the
chemotherapy. The study looked at 200 previously untreated myeloma
participation of 1,200 people from eight cities. It was a great success.
patients, all of whom were under the age of 65. IFM-90 was a big success,
Please tell us about some of the significant IFM studies.
demonstrating the superiority of high-dose therapy over conventional
In one retrospective analysis, we confirmed the benefit of complete
chemotherapy. The data was presented at many scientific and clinical
remission (CR) on overall survival. Such a study would have been impos-
meetings and was later published.
sible in earlier years because the number of patients achieving CR with
How did the three cooperative groups evolve into the IFM?
conventional chemotherapy was very low compared to HDT followed by
Thanks to the success of IFM-90, our group of researchers was able to
autologous transplant. But now we have been able to demonstrate that in
continue to work together. We designed the IFM-94 and IFM-95 trials,
myeloma, achieving CR does have an impact on overall survival, as it does
applying the same philosophy of cooperating by sharing responsibilities
in other hematological malignancies. We also looked at patients who did
and helping each other that had worked so well for us with IMF-90. (By
not quite achieve CR and still had a small M-component. We called this
the way, this is how members of IFM continue to work together to this
VGPR (very good partial response) and demonstrated that CR + VGPR
day.) When we formalized our cooperative efforts under French legisla-
correlated to longer progression-free survival and overall survival. This
tion, our association became know as Intergroupe Français du Myélome.
finding has been confirmed in all of our subsequent trials, as well as by
The early success of IFM attracted many other investigators and clinical
a number of other investigators. The concept holds true not only in the
centers to our group. IFM now encompasses almost all cancer centers in
context of HDT, but also with conventional-dose chemotherapy and with
France, and includes French-speaking centers in Belgium and Switzerland.
the use of novel agents in patients with relapsed disease.
This helped expand the scope of our new trials. For example, while IFM-
Another IFM randomized study, which started in July 2005 and finished
90 included 200 myeloma patients, the participation in our studies grew
in January 2007, compared vincristine, doxorubicin, and dexamethasone
to 400 patients for IFM-94, and to over 1,000 for IFM-99.
(VAD) to VELCADE® plus dexamethasone (Vel/dex) as induction therapy
What were the initial goals set for the IFM?
prior to autologous transplantation. We recruited 480 patients, and we
hope to be making a presentation at the upcoming annual meeting of the
Initially, we focused on designing randomized clinical trials of frontline
American Society of Hematology (ASH) in December 2007. The analysis
therapies for myeloma, with the objective of asking specific questions to
has not been completed at this time, but I can share some information
be answered within a limited period of time. As both IFM's funding and
about our interim data on the first 222 patients. The overall response rate
participation increased, we began to look at other aspects of myeloma
(CR + VGPR) is superior with Vel/dex, and the difference is significant.
research, especially the role of cytogenetics and molecular biology. With
And what is even more important in my opinion is that the higher CR rate
input from Prof. Hervé Avet-Loiseau, we centralized the bone marrow and
Continues on Page 8
800-45-CURE(87)
7
Scientific & Clinical
DR. ANTONIO P. PALUMBO -- continued from page 4
stromal cells, which seem to show that the drug decreases the prolifera-
we are now able to tackle this disease with new weapons in our arsenal
tion of myeloma cells. This evidence comes from the lab of Dr. Kenneth
of armaments. Thalidomide, VELCADE, and Revlimid have changed the
Anderson, IMF Scientific Advisor from the Dana-Farber Cancer Institute
scenario of treatment by providing three new lines of myeloma therapies.
in Boston, MA. Based on this, we initiated a Phase I/II clinical trial of
We are now learning how to use these new drugs more efficiently, and we
defibrotide in combination with MPT in patients with myeloma. We used
are already seeing improvement in response rates, progression-free sur-
a dose-escalating schedule of defibrotide. At present, we can say that this
vival, and overall survival. Out there, 30 to 40 new compounds are under
combination is safe and feasible, and that it does not significantly increase
investigation in the laboratory setting or in early phase clinical trials, and it
toxicity of the MPT regimen. But it is too early to reach a conclusion about
is likely that some of these compounds will become new weapons against
the efficacy of the defibrotide plus MPT combination.
this disease. These are very exciting days for all members of the myeloma
community.
What is your outlook for myeloma patients, now and in the near
mt
future?
Editor's Note: In addition to membership in numerous professional organi-
I think that the optimism shared by members of the myeloma scientific
zations, Dr. Palumbo is a journal reviewer. He has authored more than 100
publications in peer-reviewed journals as well as numerous abstracts and
and clinical communities is now well known by the patient community.
several textbook chapters.
There are many ongoing studies that seem quite promising. After years of
using a very limited range of standard treatment approaches for myeloma,
PROF. JEAN-LUC HAROUssEAU -- continued from page 7
prior to transplantation translates into a higher CR rate after transplanta-
overall survival. Such results are almost comparable to what is achieved
tion. And if, as we believe, survival is related to response rate, then the use
with HDT in younger patients.
of the Vel/dex combination will increase the CR + VGPR rate both before
For patients who are candidates for autologous transplantation, we have
and after transplantation.
demonstrated the benefit of using thalidomide as maintenance after HDT.
Any issues with toxicity?
A recent study from Australia has confirmed that thalidomide can improve
The Vel/dex regimen is well tolerated overall, but there is a risk of periph-
the results achieved by HDT, and other recent data indicates that the use
eral neuropathy (PN) associated with VELCADE, occurring in approxi-
of novel agents in combination with chemotherapy and HDT plus autolo-
mately one third of the patients. We do not yet know the specific rate of
gous transplantation improves survival.
PN in its different grades. We are very vigilant in identifying the early signs
Next year, IFM will start a new investigation comparing Revlimid® plus
of PN and, when necessary, we either adjust the dose of VELCADE or stop
low-dose dexamethasone (Rev/dex) to melphalan, prednisone, and tha-
the treatment altogether before the onset of severe neuropathy.
lidomide (MPT). We also have questions about younger patients who are
How have novel agents impacted the work of IFM investigators?
candidates for HDT.
There are many practical examples of how novel agents -- used in frontline
Is there anything you would like to add in closing?
therapies, for relapsed patients, and with transplantation -- are improving
The IFM seeks to improve treatment strategies and to increase effi-
survival of myeloma patients. Novel agents have greatly expanded the
cacy and reduce toxicity of myeloma therapies. We strive for the highest
range of treatment options.
level of quality in our studies, and good clinical practice according to
Used sequentially in relapsed patients, novel agents improve survival by
European legislation is very expensive. We have good ideas and good
approximately two years. In the past, when patients relapsed, we would
investigators. Our biggest challenge is to find enough funding to actualize
give them the same cytotoxic agents in different combinations. And we
our projects.
had only two types of active agents, alkylating agents and steroids. Now we
The last thing that I would like to stress about the IFM is that we would
have several possibilities at hand at each step of the disease. Because novel
not have had the success we have experienced without one very important
agents are active even in heavily pretreated patients, we can achieve good
element friendship. We are not in competition with one another. We
responses in patients where such possibilities did not previously exist.
have now worked together as friends for almost 20 years, and we plan to
Of course, the second point of interest in novel agents is their benefit
continue in the same spirit. mt
for newly diagnosed patients. There are several proofs of such activity.
Editor's Note: Prof. Harousseau is a founding member of Intergroupe
For elderly patients who are not candidates for HDT and transplantation,
Français du Myélome and Groupe Ouest-Est Leucémies Aigues et Maladies
melphalan plus prednisone (MP) used to be the only option. At last, we
du sang. He is a member of the European Haematology Association
have several combinations utilizing novel agents that are superior to MP
(EHA), the European Group for Blood and Marrow Transplantation (EBMT),
not only in impressive response rates but also in progression-free and
the American society of Hematology (AsH), and the American society of
Clinical Oncology (AsCO).
8
www.myeloma.org
Scientific & Clinical
recommendations from the imwg
Prevention of blood clots associated with the use of thalidomide or lenalidomide
By Brian G.M. Durie, MD
Bloodclotscanoccurinpatientswithmyelomaaswellaswithmono- 2.What was the exact drug dosage, schedule, and combination
clonal gammopathy of undetermined significance (MGUS). The risk is
for the thalidomide or Revlimid® treatment? There is increased
related to both the underlying disease and the increasing likelihood with
risk with:
increasing age, especially over age 65 years. This background risk is in the
· High-dose dexamethasone
range of 3% to 7%, as determined by Prof. Antonio Palumbo, lead author
of recommendations from the International Myeloma Working Group
· Doxorubicin combinations using Adriamycin® (such as VAD) or
(IMWG). Fortunately, most patients have only a localized problem with,
Doxil® (such as thalidomide/Doxil®)
for example, phlebitis or inflammation of the veins of the calf of the leg
· Multi-agent chemotherapies
(deep vein thrombosis or DVT). This can be treated with blood thinners.
For patients taking thalidomide or Revlimid® alone or with low-dose
Occasionally, patients do develop blood clots that can travel to the lungs
dexamethasone (i.e. using the one day/week schedule), aspirin alone is
(pulmonary embolism or PE), which can be much more serious.
recommended as a sufficient preventative or blood thinner. For patients
With the introduction of thalidomide and Revlimid® (lenalidomide) for
who have one of the underlying risk factors and/or who are using one of
myeloma treatment, it was quickly noted that more patients were having
the increased risk combinations, more potent blood thinner therapy is
blood clot problems. This was particularly true during the first few months
recommended. The authors recommend a preference for using the blood
of treatment for a newly diagnosed patient. The exact risk related to two
thinner "low molecular weight heparin" or LMWH (e.g. Lovenox®). This
types of issues.
is preferred over the blood thinner Coumadin® (warfarin) because of
reduced risk of complications several drugs and even food items can
1. Underlying risk factors for developing blood clots such as:
interfere with warfarin and upset the balance increasing the risk of both
· Individual risk factors (obesity, prior blood clots, or having a
clotting and/or bleeding complications.
catheter)
More studies are required to assess blood clotting risk with different drug
· Other diseases (heart or kidney disease, diabetes, or infection)
combinations. The good news is that most patients can continue with
· Recent surgery, trauma, or "immobilization" (such as on a long
planned treatment with thalidomide and Revlimid® without undue risk.
air/car trip)
If a blood clotting problem develops, usually blood thinner treatment
· Other medications, particularly use of "EPO" (e.g. Procrit®,
can be started, and then thalidomide or Revlimid® treatment re-started.
Aranesp®, or Epogen®)
All patients are advised to discuss these issues directly with their treating
physicians. mt
update from the us myeLoma forum
By Michael S. Katz
EstablishedbytheInternationalMyelomaFoundation,theUSMyeloma ticalcompanyleadersinvolvedinmyelomadrugdevelopment.
Forum is a committee of the world's leading multiple myeloma experts.
The US Myeloma Forum has set a number of goals for integration of new
The Forum is a coalition that works collaboratively on key research initia-
treatments into the standard of care, as well as standardizing measures
tives and clinical trials. There are many promising therapies emerging
and methods to accelerate research. It was clear from the discussion that
from the laboratory. To translate this research "from bench to bedside," it
there are substantial issues in reaching consensus on many of the key
is crucial that we make the most of the resources available to conduct the
issues. However, we were able to make progress at the meeting, and the
most effective clinical trials and get them done as quickly as possible. The
participants agreed to continue to collaborate on working through the
US Myeloma Forum is dedicated to accomplishing this goal.
open issues.
The Forum started as a US enterprise, with the support and participation
Perhaps the most encouraging and impressive result of the meeting was
of the nation's leading myeloma researchers. Subsequently, a number
agreement on a clinical trial for treatment of newly-diagnosed patients, to
of key participants from Europe have joined the committee. At the first
be pursued by a consortium of the participating clinical trials groups. The
meeting, held this past April, US cancer clinical trials groups represented
trial, designated S0777, will compare combinations of steroids, Revlimid®,
included Eastern Cooperative Oncology Group (ECOG), Southwest
and VELCADE® as frontline treatments for myeloma. Patients treated suc-
Oncology Group (SWOG), and Cancer and Leukemia Group B (CALGB).
cessfully will continue on the study, collecting stem cells for a potential
Representatives from the National Cancer Institute's (NCI) Cancer Therapy
transplant but initially being placed on maintenance therapy with the
Evaluation Program (CTEP), which is a major funder of myeloma clinical
hope of prolonging their remissions.
trials, also attended. Representatives of myeloma clinical trials groups
from Italy, France, Holland, and Spain were also took part in the meeting.
Recently, S077 was approved by NCI's CTEP and the protocol is expected
In addition, there were myeloma patients and caregivers, and pharmaceu-
to be available to patients in the near future.
mt
800-45-CURE(87)
Nurse Leadership Board
nLb activities update
Myeloma Today in conversation with
Page Bertolotti, RN, BSN, OCN
Cedars-Sinai Medical Center
Kena Miller, MSN, FNP, and Beth Faiman, RN, MSN CNP, AOCN
Samuel Oschin Comprehensive Cancer Institute
Los Angeles, CA
How did you become involved with the NLB, and
for journal publication, so the NLB is turning its atten-
Elizabeth Billoti, ANCP, ONP, AOCN
what can you tell us about its activities?
tion to new areas of focus. As myeloma evolves into a
St. Vincent's Hospital
Kena: Most of us were nominated for the Nurse
chronic disease, there are more and more long-term
New York, NY
Leadership Board (NLB), either by the myeloma spe-
survivors who are likely to use various myeloma treat-
Kathleen Colson, RN, BSN, BS
cialists we work with or by our nursing colleagues.
ment agents repeatedly, often re-combined into new
Dana-Farber Cancer Institute
Boston, MA
The NLB is a unique partnership between the IMF and
regimens. This is why it is imperative the myeloma
a group of oncology nurses from leading cancer cen-
nursing community to develop consensus on how
Kathleen Curran, RN, BSN, BS
University of Pittsburgh
ters treating multiple myeloma in the United States,
to best manage long-term side effects and long-term
Pittsburgh, PA
as well as from representative community practices.
management of therapy. This applies to standard
Deborah Doss, RN, OCN
The NLB provides an unprecedented opportunity to
treatments, novel agents (Thalomid®, Revlimid®,
Dana-Farber Cancer Institute
improve patient care by sharing myeloma knowledge
VELCADE®), emerging therapies (low-dose dexa-
Boston, MA
and experience among our colleagues on the Board,
methasone, Doxil® plus VELCADE®), and experimen-
Beth Faiman, RN, MSN CNP, AOCN
as well as to disseminate our expertise to our col-
tal therapies.
Cleveland Clinic
leagues in community-based settings who are also car-
Kena: In general, the management of long-term side
Taussig Cancer Center
ing for myeloma patients. Healthcare is a team effort
Cleveland, OH
effects is not an area that is well-developed in cancer
physicians make the decisions, but it is often nurses
care, and this has been true for the field of myeloma
Maria Gavino, RN, BSN
who implement the treatment and help manage the
M. D. Anderson Cancer Center
as well. I am currently working with one myeloma
Houston, TX
patients' response to it.
patient who is 18 years post-diagnosis, and there are
Teresa Jahns Miceli, RN, BSN
Please bring us up to date with NLB activities.
many more patients like that across the country. This
Mayo Clinic
Kena: At the first NLB retreat in November of 2006, we
is a wonderful new frontier, and we must help our
Rochester, MN
initiated the drafting of nurse consensus guidelines to
patients maintain their quality of life while managing
Bonnie Jenkins, RN, OCN
clarify specific protocols and procedures that nurses
their disease over the years.
University of Arkansas for Medical Sciences
Little Rock, AR
can use to help myeloma patients optimize their treat-
Beth: To address these issues, the NLB formed four
Kathy Lilleby, RN
ments, manage side effects, and receive the support
task forces focusing on patient education, nursing
Fred Hutchinson Cancer Research Center
they need. In developing the guidelines, NLB mem-
education, long-term side effects, and publications.
Seattle, WA
bers focused on the management of side effect asso-
All NLB members are involved in working on the long-
Ginger Love, RN
ciated with myeloma: myelosuppression, peripheral
term side effects task force. In addition to working on
University Hematology Oncology Care
neuropathy, DVT/PE, GI side effects, and steroids-relat-
our respective teams, Kena and I also served as the
Cincinnati, OH
ed side effects. As a result of this initiative, NLB mem-
retreat's faculty. We worked as a tag-team, facilitating
Patricia A. Mangan, MSN, CRNP
bers presented a poster entitled "Nurse Guidelines
each other's presentations, as well as those by the
Hospital of the University of Pennsylvania
for Enhanced Patient Care" at the 11th International
leaders of the various task forces.
Philadelphia, PA
Myeloma Workshop, which took place in Greece in
Emily McCullagh, RN, NPC, AOCN
Kena: NLB members also benefited from an edu-
June 2007.
Memorial Sloan-Kettering Cancer Center
cational presentation by Dr. Brian Durie, Chairman
New York, NY
Tell us about the second NLB retreat.
of the IMF, who discussed scientific updates on
Kena Miller, MSN, FNP
Beth: The second NLB retreat took place in Santa
long-term side effects and management approaches,
Roswell Park Cancer Institute
Monica, CA, in August of 2007. NLB members
patient-related outcomes, transplant therapies, renal
Lewiston, NY
reviewed and discussed each section of the consensus
impairment, bone health, and the efficacy of novel,
Katy Rogers, RN
guidelines. The guidelines are now being prepared
emerging and experimental therapies for myeloma.
Sidney Kimmel Comprehensive Cancer Center
Johns Hopkins University
Continues on next Page
Baltimore, MD
Sandra Rome, RN, MN, AOCN
Cedars-Sinai Medical Center
Samuel Oschin Comprehensive Cancer Institute
Los Angeles, CA
Stacey Sandifer, RN, BSN
Cancer Centers of the Carolinas
Greenville, SC
Lisa Smith, MSN, FNP, AOCN
Cancer Centers of the Carolinas
Greenville, SC
Joseph Tariman, RN, MN, ARNP-BC, OCN
Northwestern University
Seattle, WA
Jeanne Westphal, RN
Meeker County Memorial Hospital
seated, left to right: Diane Moran, Page Bertolotti, Beth Faiman, and Kena Miller.
Litchfield, MN
standing, left to right: Kathleen Colson, Katie Rogers, Ginger Love, Patricia Mangan, Teresa Jahns Miceli, Bonnie Jenkins,
Elizabeth Billoti, Lisa smith, Joseph Tariman, sandra Rome, Deborah Doss, Jeanne Westphal, and Kathy Lilleby.
10
www.myeloma.org
Supportive Care
peripheraL neuropathy
Myeloma Today in conversation with Ginger Love, RN
What is peripheral neuropathy, and what is its cause?
significant impact on a patient's quality of life, so it
Peripheral neuropathy (PN) is damage to the peripheral ner-
is important to catch, evaluate, and address PN as
vous system. Such damage can be caused by any of a variety
quickly as possible.
of factors, including injury, inflammation, or a number of
What is the prognosis once it is determined
medical conditions or their treatments. In myeloma, PN is
that a patient has PN?
rarely present at diagnosis, although there are such cases.
However, several approaches to myeloma treatment, includ-
First of all, this depends on whether PN is induced
ing some novel therapies, are associated with PN as a side
by the myeloma disease itself or if PN is the side
effect. With long-term use of Thalomid® (thalidomide), the
effect of treatment. If PN is induced by a spe-
incidence of PN is between 22% and 54%. With VELCADE®
cific drug, and if this is caught early, we can often
(bortezomib), according to scientific data, the incidence of
resolve symptoms. In many such cases, we are
PN in patients who have had prior therapies is approximate-
able to either stop or reverse PN. Otherwise, the
ly 34%. However, with Revlimid® (lenalidomide), another
patient may end up with irreversible peripheral
novel agent used to treat myeloma, the current data indi-
nerve damage.
cates that only approximately 2% of patients develop PN.
Ginger Love, RN
How is PN treated or managed?
University of Cincinnati
How and when is PN assessed in myeloma patients?
If a patient is about to start therapy that is associat-
College of Medicine
It is important for all myeloma patients to be assessed for
ed with a possible side effect of PN, or is exhibiting
Cincinnati, OH
PN at diagnosis in order to establish a baseline. Such assess-
early signs of PN, we often recommend nutritional
ment should then be repeated whenever it is clinically indicated, especial-
support, supplementation with B-complex vitamins and folic acid, and
ly if the patient is receiving therapy that includes Thalomid or VELCADE.
certain amino acids. There is anecdotal evidence that these approaches
Because PN can be a very challenging side effect, healthcare providers are
work, but this has not been confirmed through scientific studies. If a
on the lookout for potential symptoms, but it is also important to educate
patient already has a higher grade of PN, we consider treatment with
patients and their caregivers about the symptoms of PN and encourage
tricyclic antidepressants such as amitriptyline (Elavil®). In cases where
them to report all possible signs as early as possible. It is easier for doc-
there is a more neurotoxicicity, we consider using medications such as
tors and nurses to monitor patients whose therapy is being administered
gabapentin (Neurontin®) or pregabalin (Lyrica®), as well as referring the
intravenously because we have an opportunity to observe and to question
patient for physical or occupational therapy. If pain is an issue, we may try
such patients on a more regular basis. Patients who see their healthcare
Lidoderm® patches. Severe pain may require a referral to a neurologist or
providers less frequently such as when myeloma therapy is oral and self-
to a pain management specialist. Dose adjustment, termination, or change
administered must remain vigilant to noting and reporting any potential
of therapy is considered on a case by case basis.
adverse side effects they may be experiencing. If you are in doubt if what
I would like to stress, that patients should not under-report their symp-
you are experiencing is PN or not, contact your doctor or nurse to report
toms for fear that their therapy might be terminated. In many cases, it is
and discuss your symptoms.
possible to address PN with dose adjustments and, even if it is necessary
What are the signs and symptoms of PN?
to stop therapy, it can often be possible to restart it at a reduced dose once
symptoms are resolved. Because patients who tend to under-report their
In extremely mild cases of PN, it is possible for a patient not to be aware
side effects to their medical teams may also be inclined to withhold their
of any symptoms. In such cases, unless a nerve test is performed, it would
complaints from their caregivers, it is important for family and friends to
be difficult to ascertain the presence of PN. However, as the grade of PN
be on guard for signs of PN.
increases, common manifestations reported by patients include numb-
ness, tingling, or discomfort in hands or feet. One simple question nurses
What are some of the overt signs to watch for?
often ask patients when evaluating them is, "Do you have any trouble
Patients may be less steady when walking, or be unaware of stubbing
buttoning buttons?" Patients can also experience pain, muscle cramps
their toes. Hand numbness may lead to dropping cups and utensils, and
or weakness, trouble walking, sensitivity to touch, cold hands or feet,
to difficulties with feeling small objects. In general, an informed and
pricking sensations, or burning pain. Sometimes PN results in hearing
educated myeloma patient community, and a heightened awareness of
problems, or a ringing/buzzing in the ears. Depending on the grade of PN,
PN, are very effective tools in monitoring or preventing this challenging
it can interfere with function or with basic daily activities. PN can have a
side effect. mt
NLB -- continued from previous page
What were your key takeaway messages from this NLB retreat?
working on coordinating a Speakers Bureau and other new myeloma
Beth: Each NLB member contributes something unique to the group,
educational initiatives.
from experience in direct patient care to expertise in clinical research.
Kena: Our work is an ongoing endeavor. Myeloma is a very intense
Being part of the NLB enhances our education and empowers us to take
disease. To work in myeloma, you have to have a particular dedication
charge of exciting new projects. In addition to what we have already
and a passion and for your patients. These characteristics describe every
discussed, the NLB is now addressing how to best disseminate the NLB
member of the IMF's Nurse Leadership Board. It is very gratifying to be a
Consensus Guidelines to the entire nursing community in the US. Besides
part of such a hard-working group of people. mt
the upcoming publication of the NLB Consensus Statements, we are
800-45-CURE(87)
11
Education & Awareness
the myeLoma mobiLe: a famiLy Journeys across america
By Robin Tuohy
My husband Michael was diagnosed with mul-
to see the local Fox/NBC
tiple myeloma seven years ago at age 36. Most
affiliate waiting to meet our
newly diagnosed patients have never heard of
entire family even our dog,
myeloma, unless they already know someone
Shannon, and cat, Spike, got
with this disease. This year, 20,000 more people
some media attention! Then
will be diagnosed with myeloma. And we don't
we did live radio interviews
ever want anyone to feel as lost or alone as we
with KTOE in Rochester and WICC in Connecticut.
did seven years ago.
In Grand Island, NE, support group leader and long-time friend
There is limited public awareness of myeloma, and sparse research funding.
Jim Omel hosted a picnic for 30 people that's a crowd for Nebraska!
In collaboration with the IMF, where I work as regional director of support
Mikey especially loved fishing in the lake behind Jim's house. The picnic
groups for the Northeast, our family wanted to do what we could during the
lasted until 10PM, and
summer of 2007 to change this. Along with our children, 14-year-old Ally
we got lots of hugs and
and 9-year-old Mikey, we traveled in an RV called the Myeloma Mobile on
encouragement to keep
a cross-country tour. Our plan was to educate and empower patients and
on "keepin' on." At the
their families in local communities across the United States, both in major
Rocky Mountain Cancer
cancer clinics and smaller support groups
Center
in
Denver,
Leaving the East Coast and heading West
CO, there was a fan-
tastic turnout to the
We left our Connecticut home on June 16, the last day of school for the
Myeloma Mobile event
kids. The trip got off to a great start when Dr. Mel Goldstein, meteorologist
IMFers Diane & Jarvis
for ABC affiliate WTNH-TV in New Haven, CT, invited us to join him on
Seccombe and Nancy
the noon news. Dr. Mel is an 11-year myeloma survivor and an outspoken
Thompson decided to
patient advocate.
start a local support group after they heard us speak. We also received
We headed to Boston and Fenway
news coverage from CW2.com and KWGN-TV. We celebrated Michael's 43rd
Park, where we set up a table at
birthday in beautiful Colorado!
the gate where thousands of peo-
In Moab, UT, we had our first vaca-
ple enter in order to disseminate
tion days of the trip. We escaped the
IMF educational materials. Then
107-degree heat by rafting down the
we were invited onto the field
Colorado River. As we headed for Salt
(where Mikey and I put some
Lake City, UT, we stopped at Arches
Fenway dirt into our pockets).
National Park and Dead Horse State
We stood with Wally, the Red Sox
Park, and at the Great Salt Lake. The
Mascot, and two Red Sox "Socks" Mascots. When the announcer said that
kids sure got great lessons as we drove
Michael was a 7-year cancer survivor, the 36,000+ people in attendance
across our beautiful country!
erupted in cheers and applause. It was awesome!
After a stop in Nevada, we headed for California. In Lake Tahoe, we were
We visited Millennium Pharmaceuticals in Cambridge, MA, for a fun and
approached by a family from Australia. They were excited to meet us
informal event. Both Michael and I spoke to a crowd of supporters. Then
because they had heard about the Myeloma Mobile! We met many people
Ally and Mikey played Michael's song, I'm Not Leavin', and the crowd
who wanted to donate money, but our tour was strictly about education
loved it. On our way to the next destination, Michael called in to a live
and awareness, so we just thanked the generous folks and referred them to
radio show on WDRC and spoke
the IMF.
about myeloma, the IMF, and the
Myeloma Mobile. After stops in
In Sunnyvale, CA, we
Watkins Glen, NY, and Cleveland,
had a memorable visit
OH, we arrived in Ann Arbor, MI.
at Kyphon. We toured
We were greeted by 24 members of
the facilities, saw how
the local myeloma support group!
balloon kyphoplasty
Next day, we visited the University
was developed, and met
of Michigan Cancer Center, where
hundreds of staffers.
Dr. Yasser Khaled led an educational program. At many of our stops, the
We were touched by
Myeloma Mobile events featured local clinicians who were there to educate
the heartfelt reception
the public.
we got. At the event,
myeloma patients Jeffrey Martinez and Thomas Lujan talked about how
In Wisconsin, we were greeted by three support groups from Madison,
kyphoplasty helped with their spinal compressions, and IMF's David Smith
Milwaukee, and Racine. We also spent a day filming a two-part story for
and Arin Assero spoke about how innovative tools improve patients' lives.
StoryBridge.tv. The Mayo Clinic in Rochester, MN, was our next stop. IMF's
Many thanks to Kyphon's Israel Madera and his family for taking such good
Kelly Cox started off the event with a brief talk, which was followed by a
care of us.
presentation by Dr. Martha Lacey. As we left the building, we were surprised
1
www.myeloma.org
Education & Awareness
When we rolled into Los Angeles, it was
University for an event featuring Drs. Leonard Heffner and Sagar Lonial.
like coming home to our second fam-
In the Norfolk area of Virginia, we were honored to be present at the
ily, the IMF. Susie Novis and the IMF
first meeting of a new myeloma support group founded by Jerry Walton,
staff are incredible people who really
a patient and a recently retired high school teacher who truly under-
care. At the Myeloma Mobile event, we
stands the meaning of "Knowledge is Power!" Next, our Myeloma Mobile
also got to see many folks from sev-
traveled to the Sidney Kimmel
eral Southern California support groups.
Comprehensive Cancer Center
at Johns Hopkins in Baltimore,
Dr. Brian Durie gave a presentation
MD. The event, which featured
and fielded numerous questions
Drs. Carol Ann Huff and William
from the audience.
Matsui, was standing room only.
Thanks to IMF's Nancy Baxter,
At the Abraham Cancer Center of
Michael was invited to throw out
the University of Pennsylvania,
the first pitch at a San Diego Padres
we were happy to see Dr. Edward
baseball game! He was also inter-
A. Stadtmauer, a pioneer of non-chemotherapy treatments for myeloma. He
viewed about myeloma by a local TV
fielded lots of questions on everything from immunotherapies to organics.
station. After the game and a visit with local support group members, we
We were happy to see Maddie Hunter and Marilyn Alexander, leaders of
said goodbye to the West Coast.
the local support group, and Ann McNeill, who leads the support group at
Heading East via the Southwest & the South
New Jersey's Hackensack University Medical Center. The Hackensack center
At the Mayo Clinic in Scottsdale, AZ, we were met by our featured speaker,
chartered a bus so their patients could to attend the event. Folks from the
Dr. Rafael Fonseca, as well as many Mayo staffers. The event was attended
Central New Jersey Support Group
by both the Phoenix and the Tucson myeloma support groups and several
also came. We met many patients who
newly diagnosed patients.
were not part of any group and we
encouraged them to join one!
In North Texas, we
joined 50 support
At the Celgene headquarters in
group
members
Springfield, NJ, we toured the facility,
at a baseball game
then participated in a press confer-
between the Frisco
ence and met with over 750 research-
Rough Riders and
ers, developers, and others. The Tuohy family is particularly grateful to
the Corpus Christi
Celgene because Revlimid® is the treatment that accounts for Michael's
Hooks.Michaelthrew
current complete remission. He is my husband, best friend, soul mate,
out the first pitch
and the absolute best dad to our children. Novel therapies have made it
and the announcer
possible for us and for other families to have our lives back, and we are
talked about myeloma, the IMF and the Myeloma Mobile. In Dallas, 70 peo-
forever grateful.
ple from several Texas support groups greeted us at the Charles A. Sammons
Ahhh...Homecoming!
Cancer Center at Baylor University. Drs. Marvin Stone and Robert Berryman
During our 63-days journey, we traveled 11,000 miles through 30 states,
led the presentations. Fox 4 KDFW interviewed us, as well as several other
attended over 20 events, and met thousands of people. And we had one
patients and caregivers. In Houston, we visited the M.D. Anderson Cancer
more event left our homecoming! On August 17, at the Leever Cancer
Center for an event was attended not only by many patients and caregiv-
Center in Waterbury, CT, the grand finale of our tour featured Dr. Paul
ers, but also by a remarkable number of clinicians! Unfortunately, Michael
Richardson of the Dana-Farber Cancer Center in Boston, Dr. Kurt Sabbath
was under the weather, so it
of the Leever Cancer Center, Mayor Mike Jarjura of Waterbury, Mayor Robert
was left to Mikey, Ally, and
Chatfield of Prospect, and our friend Dr. Mel Goldstein, who arranged for
I to speak to the audience
live TV coverage of the event. Michael and I shared the experiences of
about our Myeloma Mobile
our journey with patients,
journey .
family, friends, nurses,
In Louisiana, we were inter-
and staff who packed the
viewed by Lake Charles NBC
auditorium. We were for-
affiliate KTLC-TV. In Lafayette,
tunate to have media cov-
it was Fox15-TV and The
erage from the Waterbury
Daily Advertiser newspaper.
Republican
American,
In Baton Rouge, our segment with WVLA-TV aired twice! After a tour of New
The Prospect Pages, WPLR
Orleans, we continued to Mississippi. We visited the Dexter Avenue Baptist
radio, and the Archdiocese
Church, where Martin Luther King organized the Montgomery Bus Boycott
of Hartford's television
in 1955. In Alabama, we stopped at the Rosa Parks Museum and Martin
magazine "Crossroads".
Luther King's church and home.
Our tour with the Myeloma Mobile may have ended but the friendships
In Georgia, Andy Lebkuecher, our good friend and IMF's regional direc-
we've made will last forever. We thank Susie Novis and the IMF, all of our
tor of support groups for the Southeast, joined us for a cookout with the
sponsors, and everyone we have met along the way, for helping make the
Atlanta Area Myeloma Support Group, one of the largest and oldest groups
dream of this crusade a reality. People helping people that's what it's all
associated with the IMF. We visited the Winship Cancer Institute of Emory
about! mt
800-45-CURE(87)
1
International Affiliates
amen ceLebrates second anniversary
By Michael S. Katz
AMEN, the Israeli Association of Myeloma
Dr. Durie was able to share current developments in
Patients, is the IMF's affiliate in Israel. AMEN
multiple myeloma and learn about important work in
was founded to help improve the quality of life
the field being done at Ein Kerem. The doctors took
of myeloma patients through education and sup-
the opportunity to present cases to Dr. Durie to get
port, to centralize information on the disease
his perspective. Once we left Ein Kerem for Herzliya,
and its treatments, and to act as a liaison with
a city on Israel's central coast just north of Tel Aviv,
Bituah Leumi (social security) and health insurance
a huge traffic jam (or was it divine intervention?)
companies.
provided the opportunity for the doctors to continue
their discussions and present several more cases.
It has been wonderful to watch the progress that
AMEN has made in just two short years, helping
Once we arrived at Kibbutz Shefayim, we were
the myeloma community in Israel. It has been an
pleased to meet and speak with many myeloma
honor to be involved even in a small way in this
patients and their families. Many local doctors joined
good work. I've had the opportunity to meet with
us in our salute to AMEN, an organization that has
AMEN's Vaad (council), to attend a local support
excelled at providing individual patient support as
group meeting, and to speak at a program for
well as setting up support groups, developing infor-
Israeli oncology nurses.
mation in four languages, helping to build research
collaborations, and pressing the government and
So, I was thrilled to be invited to be a part of
Michael s. Katz
drug companies to make the best treatments avail-
AMEN's recent second anniversary celebration. It
able to patients in Israel.
was also wonderful to have the opportunity to visit AMEN and Israel with
my colleagues, Dr.
Dr. Durie's talk gave the attendees a view of the latest in myeloma treat-
Brian Durie and Susie
ments and the exciting developments on the horizon. As a patient, it
Novis, the chairman
is so encouraging
and president of the
to hear how much
International Myeloma
progress is being
Foundation. For Susie,
made in treating
it was her first visit.
myeloma. There
For Brian, it was his
are new drugs
first visit since spend-
available that are
ing a summer on a
saving lives every
Kibbutz near Tsfat over
day, and more
Dr. Brian Durie with Prof. Dina Ben Yehuda
30 years ago.
novel therapies
(Hadassah Ein Kerem) and Paula Azulai (AMEN)
are on the way.
We arrived a few days
early to tour Jerusalem and the north. Seeing first-hand the incredible
On Friday morning, AMEN arranged for Dr. Durie to meet with the Israeli
historic sites and natural beauty of the country, and visiting diverse com-
Myeloma Study Group to discuss current clinical trials and potential
munities was a stark contrast to the political caricatures of Israel that we
research collabo-
often get from newspapers and television.
rations. In the
evening, after a
On Thursday, we had
relatively peace-
the opportunity to
ful Shabbat on the
meet with the Dr. Ben
Tel Aviv seashore,
Yehudaandothermem-
we had dinner
bers of the Department
with
members
of Hematology at
of AMEN's Vaad
Hadassah Ein Kerem
before hurrying to the airport for the flight back to the US. We thank AMEN
Hospital. Ein Kerem is
for its many accomplishments and for all that it continues to do to support
a beautiful neighbor-
and advance the causes of the myeloma community.
hood in the hil s of
mt
southwest Jerusalem. Located in Ein Kerem, Hadassah University Medical
Editor's Note: Michael s. Katz is a member of the IMF's Board of Directors.
Center is a 700-bed facility that deals with virtually every conceivable
For more information about AMEN, please visit www.AMEN.org.il or
aspect of modern medicine and serves as a national referral center for the
contact Mati Raviv at mati-r@013.net.il or 052-258-7612, or Zipy Farber
most complex and challenging medical cases.
at zipyfarb@netvision.net.il or 052-396-1210.
14
www.myeloma.org
Support Groups
new Jersey: hackensack
In October of 2006, Ann McNeill, an questions from group members. She has also led a group presenta-
oncology nurse practitioner from the
tion on how to understand and interpret test results. The group
Hackensack University Medical Center
now has a co-leader, Stephen Suppa, who has become an invaluable
(HUMC) in Hackensack, NJ, attended the
asset, working with Ann to help increase the group's outreach.
Lymphoma and Myeloma Conference in
In August, members of the HUMC Multiple Myeloma Support Group
New York City. There she met Robin
traveled together to Philadelphia to great Robin Tuohy and her family as
Tuohy, IMF's Regional Director of Support
they made a stop on their way back home from a cross-country myeloma
Groups (Northeast). Robin was interested
awareness road trip in the Myeloma Mobile. "We are a very close-knit
in revitalizing the myeloma support group
support group," says Ann. "Attending the Myeloma Mobile awareness
at HUMC's Cancer Center. The group had
event was just one example of the ways that we are always there for one
dissipated when it lost its facilitator, and
another."
Ann McNeill, RN, NP-C,
Ann seemed like the perfect candidate to
mt
and stephen suppa
lead the group.
Editor's Note: The Hackensack University Medical Center Multiple Myeloma
support Group meets on the third Thursday of each month, from 10:30am to
The first meeting of the new HUMC Multiple Myeloma Support Group
noon, on the third floor of the sanzari Building. This group is open to myelo-
took place in January of 2007, with 25 people in attendance. In subse-
ma patients, family members, caregivers, and friends. For more information,
quent monthly meetings, the group has bonded well and attendance
please contact Ann McNeill amcneill@humed.com or 201-996-5983.
continues to be good. While
some meetings are forums for
discussions between facilita-
tors and group members, other
meetings have featured guest
speakers, including a nutrition-
ist, leaders of other Northeast
myeloma support groups, and
IMF's Robin Tuohy, who is her-
self a caregiver. Ann McNeill
is always present to answer
caLifornia: inLand empire
TheInlandEmpiremultiplemyelomasupportgrouphelditsfirstmeet- storiesandtoaskquestions."
ing in May 2005. The group was organized by Tom Courbat and Jim
Tom's myeloma is related to Agent
McCulloch, with the assistance of the IMF. Tom and Jim knew each other
Orange exposure during the Vietnam
through the online myeloma ListServ but they had never met until the IMF
War, when he was stationed at Camp
suggested they collaborate on starting a support group.
Casey, near the demilitarized zone
Five people attended the first meeting, but membership has now grown
between North Korea and South
to include 120 patients and caregivers, with 12 to 50 attending most gath-
Korea. Because he has developed
susie Novis & Tom Courbat
erings. The group was founded to serve Riverside and San Bernardino
extensive experience with getting claims processed through the US
Counties, but has also welcomed participants from as far away as Long
Department of Veterans Affairs, the IMF refers myeloma patients to Tom
Beach, Orange County, and San Diego. Many group members have formed
who are in a similar situation and need advice or assistance.
close friendships that go beyond monthly meetings.
With Jim's passing last year, a new co-leader has joined the group, Valerie
"We alternate between hosting guest speakers to holding open discus-
Stevenson. Tom and everyone in the group are impressed by and grateful
sion forums for members," says Tom, who has been living with myeloma
for her dedication and support.
for six years. "We make sure to spend time with new members, mak-
"I found the IMF shortly after my diagnosis, and the Foundation was a
ing them feel welcome and giving them the opportunity to share their
big help to me," says Tom, "So I do all I can to help the IMF by sharing
my knowledge and providing camaraderie and
empathy to other members of the myeloma
community." mt
Editor's Note: The Inland Empire myeloma
support group meets on the third Tuesday of
every month from 6:30 to 8:30pm at Riverside
Community Hospital Cancer Center in Riverside,
CA. For more information, please contact Tom
Courbat at Tom68-69Korea@thecourbats.com or
call 951-677-6451, or contact Valerie stevenson
at valstevenson2005@yahoo.com or call her at
909-797-7716.
800-45-CURE(87)
15
Patient & Caregiver Experience
smoLdering battLes: my diagnosis with smoLdering myeLoma
By Diana Marquise, RN
LastyearonAugustninth,atage50,exactlysixyearsaftermydiagnosis my shortened life span and the inability to live out all my dreams. If I
with breast cancer, I was diagnosed with smoldering multiple myelo-
wasn't crying I was sleeping.
ma. My diagnosis came unexpectedly via a routine annual blood test.
The morning arrived for my bone marrow biopsy and I requested general
The day of my appointment, I felt absolutely fine. My family was doing well
anesthesia. The procedure went well and I was discharged home. Four
in their respective lives. I was finishing up some pending writing projects.
days later we learned about my definitive diagnosis multiple myeloma.
In terms of my health, there were no indicators that these blood test
My doctor suspected I had the smoldering type of myeloma. "Chances
results would be anything but normal.
are you'll die from something else," he
said. He told me to go home and make
Four days after my appointment, my
In spite of my medical background,
believe that I didn't have the disease.
oncologist phoned to report that my
the condition was rare enough that
His words were absolutely impossible
blood protein was abnormally elevated.
to execute -- how could I live a normal
Three days later when I returned for a
I'd never even studied it in nursing school,
life when one day my bone marrow
second blood test, he set aside time to
nor read about it in the magazines.
might get so full of bad blood cells that
talk with my husband and I. "I'm not
my bones could fracture?
sure what's going on," he said, "We won't
I felt more like a patient than a nurse.
know until we do further tests."
There were things that people told me
during the early days of my diagnosis that I will never forget. My oncolo-
Not knowing makes me very anxious. I'm a nurse and generally can
gist made a point of saying, "If this condition or experience does not rivet
handle whatever I am told, but I do have a need to know. In spite of my
your focus on life, then you've missed the point." Yes, I've had my emo-
medical background, the condition was rare enough that I'd never even
tional ups and downs. And, in the early days after my myeloma diagnosis,
studied it in nursing school, nor read about it in the magazines. I felt more
my family was quite anxious and treated me very tenderly. Now one year
like a patient than a nurse. My husband Simon and I had just moved to
later, we've all realized that I am living my usual life, the only difference is
California from Florida. My new oncologist hadn't known me long enough
that I have frequent blood tests. For now, I've made the decision to only
to know how I'd respond under the circumstances. "In the best case, your
tell my close friends and family about the disease because I don't want
elevated protein can be due to an infection occurring somewhere in your
sympathy nor do I want people to worry about me prematurely or at all. In
body," he explained. "In the worst
addition, I don't want to be treated
case, you could have a type of blood
My oncologist made a point of saying,
differently.
cancer."
"If this condition or experience does not rivet
I'm also happy to report that,
I felt the clinical side of me take con-
although my protein levels remain
trol. It was as if I'd stepped outside of
your focus on life, then you've missed the point."
high, I feel better than ever. My lev-
myself and was speaking about one of
els are monitored by my oncologist,
my patients. "A blood cancer? Like what?" I feared the worst. My oncologist
and I take all the necessary precautions to remain as healthy as possible.
said that he'd phone with the results as soon as he had them. He seemed
For the most part, I try not to think about myeloma. And my doctors say
to genuinely care about my well-being, but my husband and I left his office
that it might be a long time, if ever, before my body dictates otherwise.
dazed, confused and scared.
Although I try to be optimistic because my disease is not active, I still
How could anything be wrong with me again? I'd just passed the critical
must realistically understand that things can change in the years ahead.
five-year breast cancer survival mark, and although I dodged chemo-
Naturally, the doctors cannot make me either promises or predictions. To
therapy and radiation, I was still living with the effects of a mastectomy
help me through some emotionally difficult moments, I have a therapist
and reconstruction. For the past six years I've been followed by a holistic
who I speak with on a regular basis to help me deal with the present and
internist, eaten organically, swallowed a plethora of herbs and minerals,
any eventualities the future might hold.
and exercised on a regular basis. There are people who take less care of
My life's passion is writing, and this passion has helped me navigate
themselves who never get sick. I felt doomed.
through both the pleasant and the tumultuous times, including difficult
Two days later my oncologist phoned to say that the second blood test
pregnancies and breast cancer. Now this passion helps me cope with my
also came back with an elevated IgA, and the only way to make a definitive
new diagnosis, and although at first I thought that multiple myeloma
diagnosis was to do a bone marrow biopsy. "Isn't there any other way to
was insurmountable, I have come a long way during this first year. My
make a definitive diagnosis than such an invasive procedure?" I inquired.
plan is to survive one more hurdle of surprises my body has sprung on
My mind flashed back to my oncology internship and all the patients com-
me. My history shows that I am a fighter and I'm determined to fight this
plaining about the discomfort of that intervention.
battle too! mt
The next 48 hours before the procedure seemed excruciatingly long. We
always fear the worst when it comes to our bodies. I began planning for
1
www.myeloma.org
Investing in the Future
myeLoma today in conversation with cindy & bob feLtzin
"Investing in the Future" features profiles of IMF members who are making profound investments
in the myeloma community and the path to a cure. We hope that the stories of how and why these individuals
have chosen to commit so significantly to the fight against myeloma will inspire you as much as they do us.
Please tell us when and how you were
What enables you to lead a support group?
diagnosed with multiple myeloma.
Bob: Cindy's background is in education, and
Bob: I was diagnosed with multiple myeloma in
she is a people person. I have a background
2001, after a year of aches and an infection that
in biology and chemistry, so I am better suited
just wouldn't go away. The blood tests showed an
to analyzing information. When it comes to
elevated protein level. My doctor listed a number
explaining what's going on in the myeloma
of potential causes for the blood count abnormal-
world to our support group, that's my job.
ity, including something called multiple myeloma.
When it comes to getting 250 people to a
After more tests, I was due to receive my diagnosis
meeting or having Geraldine Ferraro or
on September 11th, but my lab samples were lost
Drs. Ken Anderson, Bart Barlogie, Mohamad
at the Ronald Reagan Washington National Airport
Hussein, or Hermann Einsele speak at sequen-
due to the repercussions of the 9/11 tragedy.
tial meetings I don't know anyone who can
My diagnosis was confirmed the next day. I just
do it better than Cindy.
couldn't feel sorry for myself after thousands of
people had just lost their lives in a terrorist attack.
Why did the two of you choose to invest
in the IMF and its research and education
How did you cope with your husband's
Cindy and Bob Feltzin
programs?
diagnosis?
Bob: It's my life. That's how I look at it. So,
Cindy: I fed him. In fact, I fed him so much that his sugar level went
whenever we are able, we write a check to help support the IMF programs
into the 400s, a diabetic level! We now know that if steroids are part of a
that have been of tremendous help to us over the years. We also donate
patient's treatment, it is not a good idea to eat a lot of carbohydrates. But,
stocks, which doesn't seem to hurt as much as writing checks, especially
at that time, we knew very little. We were still in shock over the diagnosis.
if the investment we are donating is worth more now than when we paid
Bob started treatment with a local oncologist. We did not yet realize how
for it. We also have an insurance policy in place that benefits our children
important it is to see a myeloma specialist as early as possible in order to
as part of our estate, and these trusts are set up in such a way that our
be put on the best path of treatment. By the time our son Brian found a
children can donate money for myeloma research while I am still alive. We
myeloma expert in Boston, it was too late for Bob to change his course
are fortunate to be living the `good life' in south Florida, and we believe
of treatment.
that we must do our part.
Tell us how you became involved with the IMF and the myeloma
Cindy: Government funding isn't enough to support the search for the
community.
cure. And the research being done by the pharmaceutical companies does
Bob: We attended an IMF Patient & Family Seminar a few months after my
not suffice. We feel that we must do our part and contribute economically
diagnosis. That's where we met Susie Novis, the IMF staff, and Drs. Brian
to help fund myeloma research, as well as important myeloma education
Durie, Robert Kyle, Gregory Mundy, and Sundar Jagannath. We learned so
programs. We need more action to be taken now. I would like to challenge
much about myeloma! If a myeloma patient, caregiver, or family member
every member of the myeloma community to get involved in supporting
wants to be educated about this disease, IMF seminars are "must attend"
our common cause. I know that families coping with myeloma are under
events. We are now seminar veterans, having attended many meetings in
financial strain, but many are still capable of making a donation to support
the last six years.
research and education programs. If we don't do it, who will? mt
Cindy: My earliest memory of the IMF is calling the Hotline. Whenever I
Planned Giving
had questions or concerns, the IMF was there to hold my hand. Once we
There are many ways to support the IMF. It is important that you find the
felt comfortable with the disease, we decided to re-start the local myeloma
approach that best meets your needs and fulfills your wishes. In order
support group at a Wellness Community center in Miami. I reached out to
to help start the thought process for your gift planning, we suggest the
other patients and caregivers via the IMF, local media, and word of mouth.
following forms of giving:
I've always been involved in my community, and now I was part of a new
· Bequests in your Will or Trust
· Annuity Trusts
community of people whose lives had been touched by myeloma.
· Gifts of Securities (Stocks)
· Unitrusts
· Gifts of Real Estate
· Term-of-year Trusts
Bob: My wife is a dynamo. After we moved from Miami to West Palm Beach
· Charitable Lead or Remainder Trusts
· Gifts of Life Insurance
in 2003, she founded a new myeloma support group for Palm Beach,
Estate and gift planning requires thoughtful consideration and discussion.
Martin, and St. Lucie Counties. In 2006, Cindy was the recipient of the
To learn more about any of the suggestions listed above, or other forms
IMF's Francesca Thompson Outstanding Service Award for her service to
of giving that might inspire you, please contact Heather Cooper Ortner
the myeloma community. This award was established in 1997 in memory
at 800-452-CURE (2873) or hortner@myeloma.org. We also invite you to
of Dr. Francesca Thompson, a renowned orthopedic surgeon and author
visit our website at www.myeloma.org for a more detailed explanation of
of the book Going for the Cure.
these giving plans.
800-45-CURE(87)
17
Special Events
concert for a cause
One amazing night in August, Spinal Tap headlined a concert to raise funds to benefit the IMF
ChristopherGuest,MichaelMcKeanandHarryShearer
the first concert,
(also known as Spinal Tap and The Folksmen) invit-
his girlfriend,
ed several of their friends to perform with them at the
Naomi Margolin,
first ever Concert For A Cause. The event was amazing,
continues
to
with a crowd of over 1000 people packing the historic
s p e a r h e a d
Avalon Theater in Hollywood. And they were not disap-
MMAMM and it
pointed with the show they received!
is now an annual
tradition.
For close to two hours, actor, comedian and singer
Michael McKean led an all-star show that entertained
When the IMF
and, frankly, cracked up the audience. From lyrical folk
(l-r) C.J. Vanston, Harry shearer, Michael McKean, Christopher Guest -
first approached
singing songs from spinal Tap
songs to soul-
Michael about
ful jazz to glam
creating a benefit concert,
rock, these solid
we could not have imag-
performers kept
ined how amazing he and
the standing-
his wife, Annette O'Toole,
room-only audi-
and their many, many friends
ence energized
would be. They were incred-
and cheering
ibly generous with their time
for more!
and their talents.
In the weeks
(l-r) Actress and wife of Michael McKean,
Our sincere thanks to
Annette O'Toole, daughter Nell Geisslinger,
leading up to
Legendary Van Dyke Parks (at keyboards) and friends
and actress Jane Lynch
our sponsors, Celgene,
the event, the IMF and Concert for a
Millennium, LA Confidential
Cause generated a great deal of publicity
Magazine, 97.1 Free FM, Jimi Hendrix Electric
on the radio, in print and on television.
Vodka, DJ Timbo and the Avalon Theater for
By the time doors opened at 7 pm, a line
their generous support of this event. Special
had formed down the street and around
thanks also to the amazing performers, Michael
the block from the box office. Fans of the
McKean, Harry Shearer, Christopher Guest,
performers and IMF supporters came out
Annette O'Toole, Judith Owen, Van Dyke
in droves to support this extraordinary
Parks, Jane Lynch, Nell Geisslinger and Naomi
and unique fundraiser.
Margolin. Thanks also go to the fantastic crew
of staff and volunteers for making this evening
Thanks to the generosity of our sponsors
such an enormous success. Not only were we
and a sell-out crowd, the event raised
able to generate a significant amount of money
over $40,000 to support the IMF's pro-
for the IMF, we were able to reach out and
grams and services. Concert For A Cause
let people know that "Until there's a cure...
also generated a significant amount of
Naomi Margolin joined Michael McKean to sing
There's the IMF!"
awareness in the larger community about
mt
Rainbow Connection in honor of Lee Grayson
myeloma and its treatment options.
Concert For A Cause grew out of a friendship between Michael McKean
and Lee Grayson, a talented musician as well. Michael and Lee had
been friends since high
school and Lee's pas-
sion for music connected
many people, includ-
ing Michael, to the IMF.
Before his death, Lee cre-
ated a fundraising event
called Multiple Musicians
Against Multiple Myeloma
Brian Durie and susie Novis
(MMAMM). Although Lee
with Tova Bonem, publisher of
Los Angeles Confidential magazine
passed away shortly after
Capacity crowd at the Avalon Hollywood
18
www.myeloma.org
Special Events
ceLebrating peter boyLe
Join Us in November for an Evening of Comedy with Family and Friends
Late last year, award-winning actor Peter Boyle lost his battle to TherestoftheRaymondcast,includingPatriciaHeaton,DorisRoberts,
myeloma. Peter and his wife, Loraine, were both long-time supporters
and Fred Willard, will also be on stage to pay tribute to Peter that night.
of the IMF and personal friends of Susie Novis and Dr. Brian Durie. Not
long after Peter's passing, Loraine decided to turn her grief into something
At Loraine's request, the IMF has created the Peter Boyle Memorial Fund
positive and agreed to chair an event in Peter's memory.
and all proceeds from the event will go toward this fund. The Peter Boyle
Memorial Fund will support the IMF's on-going research projects, includ-
Celebrating Peter Boyle... An Evening of Comedy with Family &
ing Bank On A Cure®.
Friends is shaping up to be the IMF's biggest and most star-studded event
ever. Celebrities and Hollywood insiders have agreed to lend their names
Anyone able to be in Los Angeles on Saturday, November 10, 2007,
and their support to the creation of an event that will truly do honor to
is invited to join us for what is sure to be an extraordinary evening.
Peter's memory and his comedic legacy.
Individual tickets are available for $350 and VIP tickets, including access to
the post-show Champagne Reception, are available for $600. Sponsorship
Ray Romano, Peter's long-time friend and colleague from their hit TV
opportunities begin at $5,000. For more information about sponsor-
show Everybody Loves Raymond, will host the show. In addition to
ships, please call Heather Cooper Ortner, vice president of development,
Ray, several comedians are generously giving their time to entertain
at 800-452-CURE (2873).
the IMF audience lucky enough to be there that night. The line-up
includes Richard Lewis and Jeff Garlin with a special appearance by
We look forward to sharing a fun-filled evening with you! mt
Martin Short, who starred with Peter in his last movie, Santa Clause 3.
Honorary Co-Chairs
EVENT SPONSORS
Irena & Mike Medavoy · Julie Chen & Leslie Moonves
International Myeloma Foundation
Chair
Presenting Sponsor
Loraine Boyle
Celgene
Celebrating Peter Boyle
Vice Chair
Tova Bonem
Honorary Commit ee
Diamond Sponsor
An evening of comedy with family & friends
Kevin & James Abernathy
Millennium
Alec Baldwin
Pharmaceuticals
Candice Bergen
Halle Berry
Saturday, November 10, 2007
Lisa Birnbach
Emerald Sponsor
Ruth & Jake Bloom
THE WILSHIRE EBELL THEATRE & CLUB
CBS Corporation
Lorraine Bracco
743 South Lucerne Boulevard, Los Angeles, California
Cornelia Sharpe Bregman & Martin Bregman
Leigh Brillstein & Abe Hoch
Hosted by
Jayni & Chevy Chase
Ruby Sponsors
Rita & Joe Cohen
Los Angeles
Blythe Danner
Ray Romano
Confidential Magazine
Lisa Doty & Stu Smiley
Caroline Ducrocq & Howard Hesseman
featuring Peter's TV family
Novartis
Andrea Eastman
Pharmaceuticals
Edie Falco
PatRicia Heaton, DoRis RobeRts
Marc Forster
Paula & Peter Gallagher
Sapphire Sponsors
FReD WillaRD
Brad Garrett
Ronda Gomez-Quinones & Howard Zieff
AMGEN Oncology
Carl Gottlieb
with Peter's friends
Kevin & James
Robin Green & Mitchell Burgess
Abernathy
Deborah & Allen Grubman
JeFF GaRlin, RicHaRD leWis
Patricia Heaton & David Hunt
Janet & Marvin Rosen
Michael Keaton
and maRtin sHoRt
Erik Kritzer
Robert, Daniel
Robin Leach
& Susie Waring
Stuart Lerner
All proceeds to benefit
Rick Marotta
the Peter Boyle Memorial Fund at the IMF
Anne Hearst McInerney & Jay McInerney
Topaz Sponsors
Jenny & Robert Morton
Reservations required. Please RSVP by October 20, 2007
Aptium Oncology, Inc.
Annette O'Toole & Michael McKean
Diane Passage & Ken Starr
Booz-Allen &
Chynna Phillips & William Baldwin
Hamilton, Inc.
Paula Prentiss & Richard Benjamin
Doris Roberts
Carol & Benson Klein
Anna & Ray Romano
Sharon & Chuck
Jane Rose
Newman
Janet & Marvin Rosen
Monica & Philip Rosenthal
Cindy & Igor Sill
Additional
Victoria Tennant & Kirk Stambler
Lorraine & Karl
Chrisann Verges & Ricky Jay
details on
Vollstedt
Mary & Fred Willard
Alfre Woodard & Roderick Spencer
our website
List in formation as of September 12, 2007
800-45-CURE(87)
1
Member Events
imfers raise funds to benefit myeLoma community
By Suzanne Battaglia
Multiple Musicians Against
Billy and Devon's Wedding
Multiple Myeloma
On July 28, Billy Jackson and
On July 15, the sixth annual Multiple
Devon Batson were mar-
Musicians Against Multiple Myeloma, a ben-
ried at the Ancient Spanish
efit held to honor the memory of Lee
Monastery in North Miami
Grayson and raise funds for the IMF and the
Beach, FL. The couple made a
myeloma community, took place at Tupelo
donation to the IMF in honor
Honey Restaurant in Sea Cliff, NY. Lee was a
of their wedding guests, who
fixture on the Long Island music scene from
gathered for the occasion
the 1970s to the early 2000s, though his
from all over the country.
career highlights included stints at Carnegie
Billy's dad, Bill, is a myelo-
Hall and in Europe. In the summer of 2002,
Lee Grayson
ma patient and leader of
Lee organized a benefit concert for the IMF called "Multiple Musicians
the Cincinnati Area Multiple
Against Multiple Myeloma," or MMAMM. That November, the much
Myeloma Support Group.
beloved musician succumbed to myeloma at the age of 55. Lee's girlfriend,
"He is the strongest person
Naomi Margolin, has headed up the
I know," says Billy. "Since
MMAMM event every July since then.
going through the transplant,
This year, the all-day event featured
he has been living life to
non-stop performances by some of
the fullest. Devon and I are
sandy, Billy, Devon, and Bill Jackson
L.I's best-known musicians, including
ecstatic at the funds we raised,
Cadillac Moon, Sean Grace, Cathy
together with our friends and family, and hope to generate more support
Kreger, the Zen Tricksters, and the
for the IMF in the future."
Jason Crosby Band. The Village of Sea
Join Us
Cliff closed down a street for the day,
making the benefit not only a con-
We are grateful to all IMFers who contribute their time, imagination, and
cert but a street fair, with face paint-
hard work to benefit the myeloma community. The IMF is committed to
ing, drumming circles and auctions.
working with you to continue to raise awareness and funding for myeloma
Local assemblyman Charles Lavine,
education and research. Join us in working together toward our common
who has attended MMAMM each year,
goal... a CURE. Our FUNdraising program provides you with the tools,
Naomi Margolin
said, "Not only is the annual event at
assistance, and expertise to make your event a success. No idea is too
Tupelo Honey one of the best ways to enjoy superb and moving perfor-
large or too small. Please contact me, Suzanne Battaglia, at sbattaglia@
mances by our very best musical artists, but it also a meaningful expres-
myeloma.org or 800-452-CURE (2873). mt
sion of the unity of our community in the fight against a challenging but
treatable form of cancer." Profits from MMAMM have grown each year,
UPCOMING MEMBER EVENTS
totaling more than $100,000 to date.
October 14, 2007
The WAMP Swim for Multiple Myeloma
· Third annual "Walk for Myeloma" Coral Gables, FL
Contact: Denise Vidot at peaches2822@aol.com
The Staffords are a busy clan. Despite careers that have taken many of
October 27, 2007
them away from their Connecticut home, Liz Stafford and her siblings
· Second annual "Money for Miracles" Dinner~Dancing~
continued their family tradi-
Auction~Raffle Warwick, RI
tion of holding the WAMP
Contact: Carol Murray Rossi at marcar@gis.com or 401-463-5709
Swim again this year at the
October 28, 2007
Wampanoag Country Club in
· "Linda's Run for Myeloma" Washington, DC
West Hartford, CT. This event
Contact: Eric Merkel at ericmerkel@quincypark.net
or 703-624-4933
honors their father, Jeffrey
November 2, 2007
Stafford, and benefits the IMF.
· "Evening 4 A Cure" Cocktails~Silent/Live/Chinese Auctions~
In 2005, proceeds from the WAMP Swim funded one of the IMF's Brian
Dinner~Door Prizes Fox Valley Club, Lancaster, NY
D. Novis Research Grants. This year's event, held on July 21, brought in
Contact: Jerra Barit, 716-741-9351, if you'd like to attend
over $20,000. Together with other monies raised by the Stafford family
November 11, 2007
and friends, another myeloma research award will be granted at the end of
· Augusto Mario Schirinzi Memorial Golf Tournament
2007. Our heartfelt thanks to the entire Stafford Family for their continued
Le Pavoniere Golf & Country Club Prato, ITALY
support of the myeloma community and the search for a cure.
Contact: Vittorio Schirinzi at vschirinzi@tin.it
0
www.myeloma.org
News & Notes
IMF Issues Prevention and Treatment
patient. Additional questions for the healthcare provider and the insurer
Guidelines for Firefighters
should concern the verification of reimbursement for ESAs. Further infor-
During the 2007 Fire-Rescue International, a global conference held in
mation regarding this issue can be found on the IMF website at www.
Atlanta in August, the IMF released the first guidelines for the preven-
myeloma.org.
tion and treatment of myeloma for firefighters and rescue personnel.
Obesity might be a risk factor for myeloma
Firefighters are at higher risk for myeloma, and the risk increases with
According to a study published in the July issue of Cancer Epidemiology,
length of service. Most recently, studies linked an increased risk of myelo-
Biomarkers & Prevention, a journal of the American Association for Cancer
ma to exposures at the World Trade Center site following 9/11. The guide-
Research, an obese person is more likely than a lean person to develop
lines grow out of numerous studies. The IMF's Bank on a Cure® gene
multiple myeloma. Researchers from Harvard Medical School and Harvard
bank has found possible links between myeloma and genes responsible
School of Public Health have found that Body Mass Index (BMI) provides
for the body's processing of dioxins and chemical contaminants produced
an indicator for an individual's risk of developing myeloma. BMI is com-
by combustion. "When firefighters leave a fire they may be covered with
puted by dividing a person's weight by the square of their height. A BMI
toxins that can lead to long-term risks," said Dr. Brian G.M. Durie. "That is
between 18.5 and 25 is considered optimal, a BMI of 25-29 is considered
why it is essential for them to limit the exposure and seek expert medical
overweight, and a BMI of 30 or higher is considered obese. For each per-
help when they need it." The guidelines are issued in cooperation with
son enrolled, researchers also recorded physical activity, diet, medications,
the Firefighter Cancer Support Network, making firefighters, active and
smoking habits, and other health behaviors, and have updated that infor-
retired, aware of the importance of proper cancer screenings and reducing
mation every two to four years. Of the 136,623 participants who qualified
hazardous exposures to themselves and their immediate family members.
for this study, investigators confirmed 215 cases of myeloma. The associa-
CMS announces NCD for coverage ESAs
tion between BMI and myeloma was strongest among men with a BMI of
A decision summary on national coverage determination (NCD) for cov-
30 or higher. The increased risk was less pronounced among overweight
erage of erythropoiesis stimulating agents (ESAs) for non-renal uses in
or obese women. Although the results among women suggested that those
who exercise more might have a lower risk, the study findings show that
cancer and related neoplastic conditions was issued this summer by the
the effect of BMI on risk of myeloma is separate from any possible effect of
Centers for Medicare and Medicaid Services (CMS). ESAs, available in the
physical activity.
US as Epogen®, Aranesp®, and Procrit®, are man-made versions of eryth-
ropoietin, a hormone that is produced in the kidney and stimulates the
Patient Electronic Access to Medical Records
bone marrow to make more red blood cells. CMS stated that emerging
Medical facilities across the US are beginning to set up specialized websites
safety concerns derived from clinical trials in several populations prompt-
for patients to conveniently access and review their medical records and
ed the review of ESA coverage. An article published on the IMF website
test results, communicate electronically with their healthcare providers,
earlier this year signaled our concern that the rationale for this decision is
and manage appointments and prescription renewals. Kaiser Permanente,
not entirely clear.
for example, is said to have close to two million members who utilize their
As this situation continues to develop, the IMF strongly encourages
online portal system. The Dana-Farber Cancer Institute is another medical
myeloma patients and caregivers to discuss any ongoing or planned use
institution that has made use of this internet technology. All facilities must
of Aranesp®, Procrit®, and Epogen® directly with the treating physician.
strictly adhere to HIPA rules about patient privacy. Ask your doctor if the
It is important to make sure there is access to a needed medication while
hospital or clinic has a patient portal available for your use. mt
ensuring that there is not any increased risk with use for each individual
Staff Updates
Randi
Liberman
Colleen R. McGonigle joins
joined the IMF in June
the IMF with an extensive back-
of 2007 as Development
ground in member services, record
Associate.
Previously,
keeping, and database manage-
Randi served as develop-
ment. She moved to Los Angeles
ment coordinator at The
in January of 2005 from North
Brandeis-Bardin Institute
Carolina where she managed the
and as special events
data and education reservations for
coordinator at the Motion
the Museum of Life and Science
Picture and Television Fund
in Durham. She also worked for
Foundation. Her years of experience in data management, will help the
organizations such as the Carnegie
Foundation to better communicate with myeloma patients, friends, and
Science Center in Pennsylvania, and
family members. Randi will also manage the IMF's direct mail campaign
the J. Paul Getty Villa and the Autry
and help with special events and other projects. "I am thrilled to be work-
National Center in California. As
ing with a dedicated team that is deeply focused on continuing the IMF's
Data Specialist at the IMF, she is responsible for maintaining accurate data
efforts in myeloma research, education, and patient care," said Randi. To
entry and record keeping for IMF patients, friends, and family members.
contact Randi, please email rliberman@myeloma.org or call the IMF at
To contact Colleen, please email rmcgonigle@myeloma.org or call the
800-452-CURE (2873).
IMF at 800-452-CURE (2873).
mt
800-45-CURE(87)
1
Spotlight on Advocacy
busy faLL LegisLative session for congress
By Christine Murphy, MA
CongressreturnedtoWashingtoninSeptemberwithafullslateof cuttingphysicianreimbursementfeesin
legislative business to finalize before the end of the year. With the
both 2008 and 2009. The Senate has no
remaining legislative days numbered, it is unclear if these issues which
plans to address the scheduled physi-
impact myeloma patients will be resolved this year.
cian payment cuts, and the fate of the
House Medicare provisions is unclear.
Earlier this summer, both the United States House of Representatives
and the Senate increased funding for cancer research at the National
On the regulatory front, the Centers for
Institutes of Health (NIH) and the National Cancer Institute (NCI) for
Medicare & Medicaid Services (CMS)
the fiscal year (FY ) 2008 Labor-Health and Human Services-Education
released policies for erythropoiesis stim-
(LHHS) appropriations bill. While the House allocation has been
ulating agents (ESAs) as well as coverage
approved on the House floor, it is unlikely that the FY 2008 LHHS
of clinical trials for Medicare beneficia-
Appropriations bill will be put to a vote on the Senate floor. The House-
ries. For myeloma, coverage of ESAs
Senate conference would likely proceed between the Committee-passed
will be limited to anemia caused by chemotherapy. The new proposed
Senate bill and the House-passed bill and would be in the context of
clinical trials policy will adversely impact myeloma researchers and
either a large omnibus bill, or a smaller mini-bus bill. It also looks like
clinicians, and could limit opportunities for myeloma patients to enter
the omnibus process will not finish until sometime before Christmas.
clinical trials.
Additionally, there are several proposed changes to Medicare that could
The IMF continues to monitor these issues to keep you informed.
impact access to critical myeloma care. The House has passed a bill that
Please visit www.myeloma.org for updates.
mt
includes provisions that would prevent the Medicare program from
2007 IMF Calendar of Events
Oct 1820 Lymphoma & Myeloma Conference New York, NY
10
IMF Annual Gala Peter Boyle Event Wilshire Ebel Theatre, Los Angeles, CA
20 IMF Clinical Conference Beijing, CHINA
10
3rd Annual Southwest Symposium Tempe, AZ
2127 Multiple Myeloma Awareness Week
17
IMF Regional Community Workshop Bergish-Gladback, GERMANY
22 IMF Patient & Family Seminar Barcelona, SPAIN
19
IMF Regional Community Workshop Berlin, GERMANY
2627 P&F Seminar Heidelberg, GERMANY
Dec 811 American Society of Hematology (ASH) annual meeting Atlanta, GA
Nov 23 IMF Patient & Family Seminar Tampa/St. Petersburg, FL
911 Eastern Cooperative Oncology Group (ECOG) semi-annual meeting
Ft. Lauderdale, FL
Other events/meetings wil be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or cal 800-452-CURE (2873).
IMFLatin America, IMFJapan and IMFIsrael events are not included above.
Imagine Moving Forward
We speak your language
is the theme of the IMF's myeloma
bracelet. Wear one in honor, cel-
The IMF publishes a comprehensive library of informative myeloma resources.
ebration, or in memory of a loved
Used by patients, caregivers, healthcare professionals, and anyone needing a
one. When people ask you about
reliable source of up-to-date information regarding the disease, these publications
it, you'll have a perfect oppor-
are critical to a better understanding of myeloma.
tunity to spread the word about
multiple myeloma. These brace-
lets are only $1 each in sets of 10.
Youth bracelets are now available,
so everybody in your family who
has been touched by myeloma can
wear one! Order bracelets online
at our website www.myeloma.
org, 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)
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PERMIT NO. 665
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International
©2007,
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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