Myeloma
Today Summer2009
Volume 7 Number 10
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
Special Event
Dr. Brian G.M. Durie, co-founder and chairman of the IMF, was
Prof. Jean-Luc Harousseau, Professor of Hematology and
honored for a lifetime of achievement in multiple myeloma
Director of the Cancer Center René Gauducheau at Nantes,
with the prestigious 2009 Waldenström's Award. In this issue
France, as wel as one of the pioneers of high-dose therapy in
of Myeloma Today, Dr. Durie shares some highlights of the
myeloma and a co-founder of the Intergroupe Francophone
traditional Waldenström's Award Lecture, a talk he gave dur-
du Myélome (IFM), is honored by the IMF with the seventh
ing the XIIth International Myeloma Workshop in Washington,
annual Robert A. Kyle Lifetime Achievement Award. To read
DC. Learn about some of Dr. Durie's contributions to key developments in the
about this important award, its distinguished recipient, and the ceremony
field of myeloma over the past 40 years. PAGE 5
that took place on May 15 in Monte Carlo, Monaco, please see the centerfold
The XII International Myeloma Workshop
story.
, the premier
PAGE 12-13
biennial scientific myeloma meeting that took place from
Profiles in the News
February 26th through March 1st in Washington DC, brought
together 1000 specialists working in the field. Topics present-
Charles Newman joined the IMF Board of Directors eight
ed included molecular and signaling pathways, immune and
years ago, determined to give back to the IMF by contributing
antibody targets, the bone marrow microenvironment, clini-
to the Foundation's governance. He became a member of the
cal trials, pathogenesis, risk stratification and prognostics, new therapeutic
myeloma community in 1996 when his wife was diagnosed
agents, and transplantation in myeloma. Read excerpts of some of the issues
with the disease. Only weeks after Sharon's diagnosis, Charles
discussed during the Workshop. PAGE 7
was in attendance at an IMF Patient & Family Seminar. He
Dr. Sergio Giralt, Professor and Deputy Chair of Stem Cel
found the experience so valuable that he became a regular at IMF meetings,
Transplantation and Cel ular Therapy at the University of Texas
even those designed for doctors. PAGE 4
M.D. Anderson Cancer Center in Houston, shares an overview
of autologous stem cel transplantation (ASCT) in myeloma
David Brown was diagnosed with myeloma in 1978,
and its current place in treatment of the disease. Myeloma
when he was 40 years old. More than 30 years later,
is the most common indication for high-dose chemotherapy
he shares the story of coping with his diagnosis,
with ASCT in North America today. Read about ASCT, and stem cel mobiliza-
undergoing treatment, and facing disease relapse.
tion and col ection. PAGE 8
After initial y choosing not to pursue myeloma
education, David and his wife Prudy have since
Dr. Sundar Jagannath, the principal investigator of a phase
become regular participants in IMF Patient & Family
II clinical trial of carfilzomib in patients with relapsed and
Seminars when they come to their area, both to further educate themselves
refractory myeloma, discusses the final results of his study of
and to meet other myeloma patients and caregivers. PAGE 21
this novel proteasome inhibitor of the epoxyketone class. He
shares the responses that patients achieved with the new com-
Also in this issue...
pound, as wel as information about the next phase of inves-
tigation. Learn more about carfilzomib and the study that has been expanded
Dear Reader by IMF president Susie Novis PAGE 3
to enrol an additional 250 myeloma patients. PAGE 9
Letters to the IMF PAGE 3
Dr. Shaji Kumar, Associate Professor of Medicine at the Mayo
Clinic in Minnesota, discusses the 1999 Mayo Clinic study of
News & Notes PAGE 15
relapsed myeloma patients, as wel as the study fol ow-up and
IMF Hotline Coordinators Answer Your Questions PAGE 16
his current research on behalf of the International Myeloma
Working Group (IMWG). The IMWG project aims to find out
Patient & Family Seminar PAGE 17
what happens to patients who have exhausted their treatment
Spotlight on Advocacy "Cancer Patient Statement of Principles" PAGE 18
options and to attempt to accelerate the process of approval for novel anti-
myeloma agents currently in the research pipeline. PAGE 11
Support Group People Helping People PAGE 19
Member Events raise funds to benefit the myeloma community PAGE 20
LOOKING FOR A LOCAL MYELOMA SUPPORT GROUP?
If you are interested in joining a support group, please visit our website
2009 IMF Calendar of Events BACK COVER
at www.myeloma.org or call the IMF at 800-452-CURE (2873).
This issue of Myeloma Today is supported by Celgene Corporation, Cephalon, Genzyme, and Proteolix.
Inter
P
nationallaceholder
Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Michael S. Katz
Dr. Edith Mitchell
Charles Newman
E. Michael D. Scott
Loraine Boyle
Benson Klein
Dr. Gregory R. Mundy
Susie Novis
Igor Sill
Mark Di Cicilia
Dr. Robert A. Kyle
Matthew Robinson
Allan Weinstein
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Y.C. Chen, Republic of China
Tadamitsu Kishimoto, Japan
James S. Malpas, England
Ian Franklin, Scotland
Ian MacLennan, England
Scientific Advisors
Raymond Alexanian, USA
Rafael Fonseca, USA
Antonio Palumbo, Italy
Kenneth C. Anderson, USA
Gösta Gahrton, Sweden
Linda Pilarski, Canada
Michel Attal, France
Morie A. Gertz, USA
Raymond Powles, England
Hervé Avet-Loiseau, France
John Gibson, Australia
S. Vincent Rajkumar, USA
Dalsu Baris, USA
Hartmut Goldschmidt, Germany
Donna Reece, Canada
Bart Barlogie, USA
Roman Hajek, Czech Republic
Paul Richardson, USA
Régis Bataille, France
Jean-Luc Harousseau, France
Angelina Rodríguez Morales, Venezuela
Meral Beksac, Turkey
Joy Ho, Australia
David Roodman, USA
William Bensinger, USA
Vania Hungria, Brazil
Jesús San Miguel, Spain
James R. Berenson, USA
Mohamad Hussein, USA
Orhan Sezer, Germany
Leif Bergsagel, USA
Sundar Jagannath, USA
Kazayuki Shimizu, Japan
Joan Bladé, Spain
Douglas Joshua, Australia
Chaim Shustik, Canada
Mario Boccadoro, Italy
Michio M. Kawano, Japan
David Siegel, USA
J. Anthony Child, England
Henk M. Lokhorst,The Netherlands
Seema Singhal, USA
Raymond L. Comenzo, USA
Sagar Lonial, USA
Alan Solomon, USA
John Crowley, USA
Heinz Ludwig, Austria
Pieter Sonneveld, The Netherlands
Franco Dammacco, Italy
Jayesh Mehta, USA
Andrew Spencer, Australia
Faith Davies, England
Håkan Mellstedt, Sweden
A. Keith Stewart, USA
Meletios A. Dimopoulos, Greece
Giampaolo Merlini, Italy
Guido J. Tricot, USA
Johannes Drach, Austria
Gareth Morgan, England
Benjamin Van Camp, Belgium
Brian G.M. Durie, USA
Gregory R. Mundy, USA
Brian Van Ness, USA
Hermann Einsele, Germany
Nikhil Munshi, USA
David Vesole, USA
Dorotea Fantl, Argentina
Amara Nouel, Venezuela
Jan Westin, Sweden
Headquarters
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Tel: 818-487-7455 or 800-452-CURE (2873)
Fax: 818-487-7454 Email: TheIMF@myeloma.org Website: www.myeloma.org
IMF Staff
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Senior Vice President, Strategic Planning
Vice President, Development
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Hotline Coordinator
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Leslie Williams (lwilliams@myeloma.org)
2
www.myeloma.org
A
Pla
Message ceho
from lder
the President
Dear Reader,
In 1998 we went to Washington, DC, to participate in "The March," the
the National Cancer Institute's (NCI) Bypass
first big grassroots cancer event to take place on Capitol Hill. More than
Budget, and the Centers for Disease Control
100,000 advocates representing every cancer joined together on the Mall
and Prevention (CDC) cancer programs.
with about 400 representing the IMF and the myeloma community. We
Since then, the IMF has continued to repre-
spent a very hot afternoon, under a blazing sun, listening to speeches by
sent the concerns of the myeloma community
Cokie Roberts, Queen Noor of Jordan, Sam Donaldson, and Al Gore, to
to policy makers. We have fought for such
name a few. It was a seminal moment for me personally and the cancer
issues as Medicare coverage of drugs with off-
community at large. That was the spark that led to the five-year doubling
label indications (like thalidomide), as well as
of the budget of the National Institutes of Health (NIH). It was also the
Medicare coverage of PET scans. Both of these
birth of the IMF's advocacy program.
important initiatives came to a successful conclusion.
Greg Brozeit led our team as IMF Advocacy Director. We soon joined a
IMF advocacy now takes on a new significance. The Obama administration
broad range of groups representing the interests of the cancer commu-
has made health care reform its highest priority. Regardless of our political
nity in Washington. This included One Voice Against Cancer (OVAC), the
leanings, our community must be represented in this debate. As always we
Cancer Leadership Council, the National Coalition of Cancer Research,
are here for you, to listen to you, and to advocate our community's con-
and C-Change (formerly the National Dialogue on Cancer). We worked
cerns to all our political and governmental leaders and representatives.
hard to ensure that the myeloma community was represented in the
health debates taking place in Washington.
Most importantly we need you! This is about your future and the future of
all the patients yet to be diagnosed.
In 2002, the IMF, along with 40 other cancer organizations, all of whom
belonged to OVAC, came together as a unified force to convey one impor-
Be informed and get involved! The IMF's Cancer Patient Statement of
tant message to Congress: "Give the war on cancer the funding it needs."
Principles (see page 18) will guide us through this process. On our
I had been asked to represent OVAC and testify on behalf of the entire
website, you'll soon find a new section devoted to advocacy.
cancer community before a major Senate hearing. Testifying along with me
This is a rare time in American political history. We intend to ensure
were Dr. Huerta, Dr. Heberman, brain cancer patient Mike Bruene, and
that our voice is heard and acted upon, that the myeloma community is
Steve Case, Chairman and CEO of AOL Time Warner.
represented when policies have an impact on us. We intend to do this
It was a humbling experience knowing that I was representing not only
work with you and for you.
the IMF, not only the cancer community, but everyone who suffers from
Susie Novis
any disease. My role on the panel was to request funding for the NIH,
Let ers to the IMF
IMF Publications
It is a bright sunny morning here in Illinois that has warmed up and
I wanted to thank you for your extremely clear and informative brochure
melted most of our snow cover. The weather is definitely looking better
publication, Understanding Serum Free Light Chain Assays, which I have
and I am doing okay. It has been six and a half years since my myeloma
re-read once a year for the last three years when it's time for my MGUS
diagnosis and four and a half years since my transplant, and very little
re-screening. I really appreciate its sophistication, accompanied as it is
change in my blood labs. I am writing because last night I met a lady at
by clarity of explanation that makes this information accessible, I think,
church who has had myeloma for about four months and she was not
to lots of people. I will continue to pay close attention to IMF and its
aware of your organization. I immediately told her about the IMF and your
resources; thank you all so much.
packets of educational information about the disease. I received one when
Priscilla M. Jensen
I first got sick and it was a big help, as was the wise counsel and advice of
IMF Patient & Family Seminars
the IMF Hotline coordinators, which it is always given in a caring, loving,
I just returned from the IMF Patient & Family Seminar in San Diego. My
positive, and cheerful manner. You are great and the service you provide
thought is... "Why did I wait all these years to go?" It was a great seminar,
is priceless.
and everyone was helpful and friendly. It was so informative. Thanks to all
Bob Reeves
who encouraged me to attend this meeting.
Martha Z. Hess
It has taken me far too long to express my gratitude for the information
IMF Hotline
and assistance you have provided me. I am especially thankful for your
referral to Diplomat Pharmacy and their relationship with the Chronic
I called you in April 2008. It was my first call to the Hotline and it turned
Disease Fund. As a result, I have received significant financial help
out to be the best call I ever made. Any information I can absorb on my
(through the Medicare Part D donut hole, etc.) with the purchase of my
own before my oncologist appointment is a tremendous help when the
doctor begins to go over my treatment. In so many ways this is what the
Revlimid®.
IMF has given me. Thank you for helping us understand and accept what
Barry Kimmel
we have and yet live each day with hope!
Yvonne Zuchowski
800-452-CURE (2873)
3
Board of Directors
MYELOMA TODAY IN CONVERSATION WITH CHARLES NEWMAN
What events led to your involvement with the IMF?
gone to many annual meetings of the American
My wife Sharon was diagnosed with multiple myeloma
Society of Hematology, and have attended several
in 1996. She had complained about some symptoms
of the biannual International Myeloma Workshops.
that turned out to be unrelated to myeloma, but our
Both forums afforded me an opportunity to meet
physician was very thorough in the tests that he ordered,
and speak with many of the researchers and
which led to further laboratory testing and, eventually,
clinicians working in myeloma and to learn the
to the myeloma diagnosis. Like many others, we first
latest thinking in the field. As a result, I would say
thought the diagnosis to be melanoma, not myeloma.
that Sharon's treatment has always been "ahead
But within four or five weeks of the diagnosis, with much
of the curve." I'd like to stress that many of the
research behind me, I found myself at an IMF Patient
educational avenues I have pursued exist as a
& Family Seminar in Houston, TX. The experience was
direct result of IMF initiatives this includes both
enormously valuable to my myeloma education, so I
patient/caregiver and clinical/scientific forums.
proceeded to attend the next five or six meetings in a
row. In total, I have now attended about ten IMF Patient
Do you find the information shared at
& Family Seminars around the country.
clinical and scientific meetings accessible
to you as a non-medical professional?
Some people might assume that once they've
attended one IMF seminar to gain knowledge about
In general, I tend to be rather analytical. In my
myeloma, there is no point to attending subsequent
professional life, I have been an entrepreneur, but
meetings.
I have a bit of a science background with degrees in both theoretical and
At every IMF Patient & Family Seminar I've attended, I either learned
applied mathematics so I have been taught the disciplines of thinking
something new or I deepened my knowledge and understanding of
logically and rigorously. I can look at data and interpret statistical results.
issues I was already familiar with. And not only have I received valuable
Actually, with myeloma information, once a person gets comfortable
information from the formal sessions conducted by the medical faculty, I
with the new vocabulary, the material is not difficult for any lay person
have also gained tremendous insight from the patients and caregivers I've
to comprehend. As patients and caregivers, we don't need to understand
met at the meetings. The physicians who make presentations at the IMF
the underlying biology of the disease, but we do need to understand the
seminars might differ in their practical and philosophical approaches to
pros and cons of various treatment options. Knowledge is invaluable, and
myeloma, but the information they share is very useful. And the "informal"
patients and caregivers should not abdicate myeloma education to their
information shared by the attendees about their experiences, specific
doctors.
physicians, various myeloma therapies, etc. have helped Sharon and me
What has been your wife's experience with myeloma?
when we've had to make choices over the years. Many of the patients and
caregivers I know are extraordinarily knowledgeable about myeloma. One
Sharon's grandfather died of myeloma. When I reviewed his medical
such patient is Michael Katz, who has been a member of the IMF Board
records and compared them to the level of care Sharon receives, I felt like
of Directors since the early days of the Foundation and is a co-founder
I was reading something from the Middle Ages. And the patients who are
of the Multiple Myeloma ListServ, an online forum that has also been a
being diagnosed today are light-years ahead of where Sharon was thirteen
terrific source of information for me. In my opinion, there is always more
years ago. But we were very fortunate. Sharon had a stem cell transplant
to learn about myeloma, so I continue to pursue all avenues that expand
before they were common, and the approach turned out to be remarkably
my knowledge.
effective in her case. She was also one of the first myeloma patients to
receive thalidomide as maintenance therapy. For the past eight or nine
Has your wife pursued myeloma education with equal dedication?
years, there has been no sign of the disease, and she has been free of
What has worked best for our family is to have a division of labor. Sharon's
treatments for six years. At the time Sharon was diagnosed, I remember
responsibility is to fight myeloma. My responsibility is to learn as much
her telling me that she hoped to live long enough to see the youngest of
as possible about the most effective approaches for her in this fight. I
our four children through high school. If it wasn't for the IMF, I am not
research the options and alternatives and make recommendations as I
sure that we would have been this fortunate with Sharon's myeloma. The
lay out the information I've learned, then Sharon makes the decision.
After all, she is the one undergoing the therapy. That's how we've always
IMF has been at the forefront of education for both the patient and the
done it. In retrospect, given how bleak the myeloma survival statistics
medical communities, and has made a significant difference in our lives.
were thirteen years ago, it was good that Sharon didn't have to cope with
How did you become a member of the IMF Board of Directors?
processing that information. She had enough to deal with. So I have been
I was invited to join the IMF Board about eight years ago. The Foundation
the one immersed in learning about myeloma. Sharon rarely accompanies
has been such a prized part of our family's life for so many years, that I was
me to the various meetings and seminars.
happy to have an opportunity to give back by contributing to the IMF's
Have you attended educational meetings other than the IMF Patient
good governance. And I absolutely adore the people at the IMF. They are
& Family Seminars?
wonderful, giving, caring people. Every time I attend a Board meeting, it is
Yes. After being introduced to the IMF Patient & Family Seminars, I sub-
like having the pleasure of seeing good friends. They are an extraordinary
sequently started attending meetings for physicians and clinicians. I have
group, unlike any other group of people I've ever met.
Continues on Page 10
4
www.myeloma.org
Scientific & Clinical
2009 WALDENSTRÖM'S AWARD
Dr. Brian G.M. Durie is Honored for a Lifetime of Achievement in Myeloma
Dr. Durie, congratulations on being the 2009 recipi-
London. Three or four years later, I came back
ent of the prestigious Waldenström's Award for
to the US and settled in Los Angeles. There, the
lifetime achieve-
International Myeloma Foundation, which was
ment. The
started while I was still in London, became a
award, named
major commitment for me. The IMF mission of
for Prof. Jan
being dedicated to improving the quality of life of
Waldenström,
myeloma patients while working toward preven-
a pioneer in
tion and a cure has remained a focus for me for
treating blood
the last 20 years.
cancers, was
Much of your work in the field of myeloma
bestowed at the opening
over the decades is still important today.
of the XIIth International
Your work on the Myeloma Staging System
Myeloma Workshop in
dates back more than 30 years!
Washington, DC. As recipient,
you presented the traditional
The Myeloma Staging System took two years to
Waldenström's Award Lecture,
develop and was published in CANCER in 1975.
and we would like to ask you
That was my first major published paper. I applied
about what you discussed in
statistics to the analysis of myeloma outcomes.
Brian G.M. Durie, MD
your talk.
Aptium Oncology
The lesson of that work was that applying new tech-
Cedars-Sinai Comprehensive
I was truly honored to receive the Waldenström Award,
niques to old problems can lead to progress. The
Cancer Center
and very thankful to all those who made it possible. In my
correlations that we made all those years ago, applied
Los Angeles, CA
Waldenström Lecture, I touched upon some of the reasons
to a relatively small data set, are still true today.
that I might have been standing at that podium, and summarized the key
Another example of a concept that has remained relevant is that
developments in the field of myeloma from when I first started working
myeloma can enter a plateau phase. Would you please tell us
on this disease through the present day. In addition, I assessed how I see
about that?
things moving forward. I have been working on myeloma for 40 years
and, in my lecture, I tried to convey some of the lessons I've learned along
In 1980, THE LANCET published my paper on the plateau phase in
the way.
myeloma. Intrinsically, myeloma is not always actively growing. The pla-
teau phase is an indolent phase during which no new myeloma growth is
What have been some of those lessons?
occurring. It is possible to stop treatment during the plateau phase, with
When I studied at the University of Edinburgh, anatomy was a major part
the disease remaining stable for two or three years or sometimes longer.
of the program. I am a clinician at heart, and understanding anatomy has
That's an important concept in terms of maintenance therapy and, yes,
served me well over the years when trying to identify what might be wrong
that crucial point has persisted to the present time. For patients in the
with an individual patient.
plateau phase, the "standard of care" is no maintenance because mainte-
When I worked at the Mayo Clinic in Minnesota, it was very clear that for
nance therapy does not offer clear added advantage.
all the research being performed at that institution, the patient always
In the years that followed, you worked on understanding amyloid,
remained the number one priority. I have never lost sight of this in the
S2M, and osteoclast activating factors and bone disease.
years that have followed. That ethos is key to the Mayo Clinic, and it is
reflected in Bob Kyle and his colleagues, as well as in all the doctors who
In the 1970s, Gregory Mundy and I worked on osteoclast activating
have passed through the Mayo Clinic over the years and those who work
factors. That work was the first recognition of myeloma-derived factors
there today.
triggering bone disease. At that time, we did not know exactly what those
factors were, but we were able to demonstrate that when fluid from
At the University of Arizona, I was recruited by Sydney Salmon to work on
myeloma is added to bone it causes bone destruction, and that the extent
the myeloma staging system. At that time, Syd was working on a method of
of the bone disease is quantitative. Our paper was published in the British
measuring myeloma cells in the body. Myeloma was unique in that it was
Journal of Haematology in1981 and was the starting point for subsequent
possible to calculate the number of cancer cells based upon the amount
studies looking at myeloma bone disease. Greg Mundy went on to identify
of monoclonal protein produced, and to correlate the total number of
several of the bone resorptive factors.
myeloma cells with the physical features that a patient manifested. In
1977, we established the first myeloma clinic there and, over the following
In 1982, the New England Journal of Medicine published my paper on
years, I pursued a variety of projects at my myeloma laboratory.
amyloid production in human myeloma stem-cell culture. By observing
myeloma stem-cell cultures in the lab, we were able to show, by electron
After many years at the University of Arizona, I moved back to the UK
microscopy, amyloid synthesis (production) as a result of myeloma cells'
to become head of the Haematology Department at the University of
macrophages.
Continues on Page 6
800-452-CURE (2873)
5
Scientific & Clinical
2009 WALDENSTRÖM'S AWARD -- continued from page 5
My work on serum beta2-microglobulin (S2M) plus albumin, which was
that we are dealing with sequential clonal changes and a disease that is
the result of collaboration with Régis Bataille, showed that S2M reflects
actually heterogeneous. It is crucial that we acknowledge that there is a
myeloma biology. Our paper was published in Blood in 1986 and, 20
tendency for this to happen, because it is myeloma's strong heterogeneity
years later, served as the basis for the International Staging System (ISS)
that makes it a tricky disease and accounts for its bad prognostic features.
of myeloma.
Along the same lines, we can look at my collaboration with Benjamin Van
In 1988, I published a paper in the British Journal of Haematology on
Camp in the 1980s, when he worked in my lab in Arizona. We looked at
overcoming multi-drug resistance (MDR) in myeloma with verapamil.
the myeloma phenotype and reported that myeloma is CD56 positive.
This was not the result of a protocol I was working on, but rather the
This was substantiated by two separate labs, including one that was a
outcome of my experience with a myeloma patient who had to be treated
repository for the Southwest Oncology Group (SWOG), one of the largest
with verapamil for her high blood pressure while she was receiving VAD
of the National Cancer Institute-supported cancer clinical trials coopera-
chemotherapy for her myeloma. I subsequently worked with cyclosporine,
tive groups in the US. When we submitted our paper for publication in
a drug that was even better at overcoming MDR than verapamil, and I
Blood, it was initially rejected because it was considered "not possible"
published several papers on this together with Pieter Sonneveld.
for myeloma to share an antigen present on nerve cells. So we supplied
further data from the world's two top labs confirming our findings with
In 1989, I started collaborating with Howard Urnovitz on the SV40 poly-
methods employing immunogold markers, and the manuscript was finally
omavirus (found in the rhesus monkey kidney cells used to make the
published in 1990, with the image from the rejected manuscript used for
polio vaccine) and circulating RNA in microvesicles in myeloma. Our work
the cover photo! It took us years to convince others that the publication
led to a more detailed evaluation of RNA sequences present in the blood
was valid and that the assertion in our original paper was in fact correct.
of people with myeloma. The project is moving forward with new tech-
nology that has made it possible to detect all of the sequences present in
There are many other examples, as these experiences are not unique. New
blood. Now, having looked at all the sequences using the new technique,
ideas are often rejected initially if they show an unexpected result. There
we have been able to confirm that the sequence we had found in the late
have been several instances where I would be contacted by someone who
1990s using what amounts to calculated guesswork is in fact the relevant
had done the same research I did many years ago but who was unaware
sequence for myeloma. The on/off "switch" for myeloma varies from
of my work until after they had completed their own research and did a
patient to patient, and this work is bringing us much closer to identifying
literature search and found my published papers.
the molecular signature of myeloma on an individual patient basis.
Has this dynamic persisted to the present day?
In the 1980s and 1990s, I studied all sorts of things with the soft agar
At present, the dynamic in the field of myeloma is dramatically differ-
culture drug sensitivity, labeling index, etc. We had the first cytogenetics
ent, as we have worked hard to establish very active collaboration. The
lab devoted exclusively to myeloma and related diseases, and we studied
International Myeloma Working Group (IMWG) is the result of those
cytogenetics on each of our myeloma patients. Many papers were pub-
efforts. Now, a promising new idea in myeloma will be immediately
lished as a result of our research, and many sank like a stone thrown into
investigated and validated by others. In fact, over the last five or six years,
a dark well.
important projects have been initiated in collaboration with the IMWG,
How is that possible?
which have produced a whole series of manuscripts.
It is not unusual for valid ideas to languish for decades. By definition, new
You have also worked on PET scanning for many years. In fact, you
concepts may not directly fit in with what others in the myeloma field are
received the 1st prize award for Best Nuclear Medicine Paper of 2002.
working on so, unless you continue to work on the concepts yourself, the
I started work with FDG (fluoro-2-deoxy-D-glucose) PET (positron emis-
ideas may not be picked up by others for many years.
sion tomography) scanning in 1997 and published the paper you are
In 1984, the British Journal of Haematology published my work on
referring to in the Journal of Nuclear Medicine
myeloma heterogeneity, which examined whether myeloma is or is not a
in 2002. PET scans can improve disease staging
monoclonal disease. In that paper, I pointed out that while myeloma cells
and treatment planning, and can significantly
tend to continue to produce the same monoclonal protein, the disease is
change the course of treatment for many myeloma
heterogeneous and evolves over time. This point is confirmed by patients
patients. With PET scans doctors can visualize the
who become non-secretory and those who develop extra-medullary
whole body to see the full extent of disease on
myeloma in the course of their disease. We see heterogeneity in disease
initial diagnosis, follow the response to treatment
that becomes resistant to treatment. When a patient becomes resistant to
more accurately, and better determine when fur-
a previously effective treatment, we see that the presence of the mono-
ther treatment is needed and when it is not.
clonal protein is deceptive, because it makes you think that the disease is
Recently, PET scanning in myeloma was finally
the same, while in fact the genetics have changed. I was able to show this
approved by Medicare for insurance coverage. It
at a molecular level. In 1984, I demonstrated that myeloma is polyclonal
took a decade to get this accomplished. As you
from the genetic perspective, manifesting sequential clonal evolution. The
might imagine, Medicare waged a battle of attri-
cells don't even look the same over time. Today, when myeloma research-
tion against the approval: they called for meetings
ers are looking at chromosomal deletions and translocations, it is clear
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Scientific & Clinical
XII INTERNATIONAL MYELOMA WORKSHOP
Excerpts from text by Lynne Lederman, PhD
Introduction
introduction of these agents, median survival of
The XII International Myeloma Workshop
patients with myeloma has been prolonged from
(IMW) was held from February 26 to March
3 to 7 years. Using these agents in combination
1, 2009 in Washington, DC. Approximately
should increase efficacy, avoid resistance, and
1000 attendees exchanged ideas during
result in a more favorable side effect profile.
the meeting sessions, symposia, poster
Early combination studies new combi-
sessions, and working breakfast and lunch
nations for multiple myeloma
sessions, and at two dinner events. This
Dr. Antonio Palumbo observed that in the
meeting was originally scheduled to be
Phase III trial of bortezomib plus pegylated
held in India, but was moved to the US
doxorubicin, the addition of the second agent
subsequent to the tragic events in Mumbai.
increased efficacy. Three-drug combinations that
Meeting organizers Drs. Nikhil Munshi,
have been tested show increased response rates.
Vincent Rajkumar, Sundar Jagannath, and
However, it is unclear which is the best three-drug combination. Four-
Vinod Raina, along with colleagues Drs. Mammen Chandy and Atul
drug combinations are also promising. Randomized studies are needed.
Sharma, hope to have the opportunity to organize the workshop in India
at a future date.
Anti-angiogenic agents
Overview
Dr. Shaji Kumar reviewed the role of angiogenesis. He cited two para-
Topics presented included myeloma molecular and signaling pathways,
digms of drugs which are known to have anti-angiogenic properties.
myeloma immune and antibody targets, the bone marrow microenvi-
Dr. Kumar concluded that bone marrow endothelial cells in myeloma
ronment, clinical trial results, pathogenesis, risk stratification and prog-
were a valid target, although it was likely that this strategy may not work
alone, so a combination approach with myeloma cell-targeted therapy
nostics, new therapeutic agents, and transplantation in myeloma. Oral
plus EC targeted might work best.
clinical presentations covered clinical trials, new agents, and clinical care;
basic biology sessions covered novel and potential therapeutic targets.
Transplant
The Consensus Panel presentations discussed Guidelines for the Uniform
Dr. Sergio Giralt presented "New mobilization and conditioning strategies
Reporting of Clinical Trials in Myeloma, Guidelines for Risk Stratification
(Autografting for myeloma in 2009)." He said that the use of novel agents
in Myeloma, and Guidelines for Standard Investigative Work-up in
for induction does affect outcome, and that researchers were starting to
Myeloma. There was a presentation on Statistical Issues in the Design
address issues about the quality and amount of cells that are being col-
and Analysis of Clinical Trials in Myeloma, along with several sponsored
lected. Dr. Giralt suggested a refocus on improving the stem cell product,
symposia and poster sessions. The final day of the conference included
determining the minimum number of cells to collect, looking at the effect
pro and con discussions, presentation of Phase II studies and plenary
of infused cell numbers on reduction of the still-considerable symptom
abstracts, and a future perspectives session. This write-up summarizes
burden, and improving immune reconstitution, noting that lymphocyte
some of the key issues discussed during the IMW meeting. Please visit the
recovery is associated with better outcome.
IMF website www.myeloma.org to read the full report.
Dr. Donna Weber discussed "Timing of transplant in the era of new drugs."
Molecular Pathways
Before novel agents, transplants offered the advantage of better survival.
The opening session included Dr. Rafael Fonseca's discussion of chro-
Dr. Weber observed that it will take powerful studies to determine if trans-
mosomal fluorescent in situ hybridization (FISH) and its association with
plantation is still needed with currently available therapies. She thinks
pathophysiologic events, prognostic value at baseline disease diagnosis,
that some form of maintenance consolidation after transplant seems war-
and its predictive value in therapeutic outcomes. He compared the value
ranted. Other questions to be answered include the length of induction
of emerging gene expression profiles versus FISH as prognostic factors.
and the best combinations of agents.
This session confirmed a number of genetic markers associated with poor
Dr. Michele Cavo discussed "Single or double autologous stem cell trans-
prognosis; but it was noted that, as new therapies emerge, alterations
plantation (ASCT) before and after the era of novel agents." He reviewed
in the prognostic value may shift. These approaches will reach their full
the history of ASCT for myeloma from the recognition that there was
potential once demonstrated as effective in clinical trials.
a dose response to melphalan, to the observation of increased CR rate
Phase III Studies
and OS with a single ASCT vs. conventional chemotherapy, to the inves-
tigation in Phase III trials of double or tandem ASCT as a way to further
The US/DFCI approach novel agents as part of new combi-
improve outcome.
nations focus on relapsed myeloma
Dr. Bart Barlogie presented "Total therapy (TT) for multiple myeloma."
Dr. Ken Anderson presented on behalf of Dr. Paul Richardson. He com-
He reviewed the past 20 years of TT which he characterized as an "evolu-
mented that bortezomib, lenalidomide, thalidomide, and pegylated
tion from palliation to cure." He maintains that there is a role for tandem
doxorubicin shouldn't be called "new" any more. He noted that since the
transplants in myeloma.
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Scientific & Clinical
PLERIXAFOR AND TRANSPLANTATION IN MULTIPLE MYELOMA
Myeloma Today in conversation with Dr. Sergio Giralt
Please give us a brief overview of transplantation
Is this likely to remain the case in the context
in multiple myeloma.
of available novel agents?
In the early 1980s, Tim McElwain (Professor of
We have seen a continued increase in the number
Medical Oncology at the Royal Marsden Hospital in
of ASCTs performed for myeloma, even after the
the UK) made a seminal observation that by giving
approval of thalidomide, Velcade® (bortezomib) and
myeloma patients high doses of melphalan, we could
Revlimid® (lenalidomide). The role of high-dose
overcome the resistance of their disease to standard
therapy in the context of these novel anti-myeloma
doses of melphalan therapy and regain control of
therapies and combinations is being re-explored,
their myeloma, albeit for a short period of time. The
but it is likely that high-dose therapy will remain
other thing he demonstrated was that the toxicity of
an important component of frontline and relapsed
melphalan primarily affected the bone marrow, the
myeloma therapy. Discussions continue regarding
organ in the bone that produces the red and white
ASCT and stem cell mobilization in myeloma in the
blood cells and the platelets, which carry oxygen
context of new therapies.
to the body, protect us from infection, and prevent
What about single versus double ASCT?
bleeding. Some patients who received very high doses
It is interesting that you ask this. The Italian and
of melphalan died from complications due to the mar-
French studies have shown that if you respond well
row toxicity. It was Bart Barlogie's concept to take out
to the first transplant, you do not benefit from the
the patients' marrow and freeze it before giving them
Sergio Giralt, MD
second. But that conclusion was made based on a
high doses of melphalan, then re-infuse the marrow
Professor, Deputy Chair,
very small number of patients in an analysis that was
to help patients recover more quickly from the mel-
Stem Cell Transplantation
not really planned so, in my opinion, this assertion is
and Cellular Therapy
phalan therapy. That's how the whole field of bone
not statistically valid.
The University of Texas
marrow transplantation (BMT) for myeloma began.
M.D. Anderson Cancer Center
The Blood and Marrow Transplant Clinical Trials
Houston, TX
Initially, BMTs were performed on patients who had
Network (BMT CTN), a cooperative group funded
exhausted their other options. Later, transplantation became a frontline
by two divisions of the U.S. National Institutes of Health the National
therapy option. There was much controversy in this arena, but most stud-
Cancer Institute (NCI) and the National Heart, Lung, and Blood Institute
ies showed that patients who underwent transplantation had a higher
(NHLBI) is conducting a randomized clinical trial of 750 patients who
complete remission (CR) rate and lived longer without disease than those
will all receive one transplant with high-dose melphalan, followed by
who did not.
either four cycles of novel therapy or a second transplant, or maintenance
alone. We encourage all patients and physicians to consider participating
In the late 1980s, it was discovered that bone marrow stem cells, which give
in this study. The results of this study should show us, in the context of
birth to all mature cells, circulate in the blood after the patient undergoes
novel therapies, if one transplant is as good as two.
chemotherapy. The stem cells could be collected from the bloodstream
after patients received high doses of Cytoxan® (cyclophosphamide). At
Let's return to the topic of stem cell mobilization.
the same time, white cell growth factors such as Neupogen® (filgrastim),
Mobilization is the process by which we get the stem cells from the mar-
Neulasta® (pegfilgrastim), and Leukine® (sargramostim) were becoming
row into the bloodstream. Stem cell procurement for ASCT has most
commercially available to help patients receive chemotherapy with less
commonly been performed with stem cell mobilization using GCSF with
marrow toxicity than before. Investigators in Europe demonstrated that
or without prior chemotherapy.
the combination of chemotherapy and these granulocyte-colony stimulat-
What are the determining factors in whether a myeloma patient is
ing factors (GCSF) "mobilized" the release of stem cells from the bone
mobilized with or without chemotherapy?
marrow into the bloodstream. It was no longer necessary to put patients
This often depends on whether the patient has active myeloma, the extent
under general anesthesia to harvest cells by direct penetration and aspira-
(and type) of prior therapy, and disease duration. Sometimes the determi-
tion of the marrow from the bones. We could collect large numbers of
nation is based upon the program in which the patient's physician is par-
patients' stem cells directly from the blood, as if it were a blood donation.
ticipating. Modern technology allows for about 95% of myeloma patients
This is how autologous bone marrow transplantation (BMT) was replaced
to be successfully mobilized with enough cells for one or two transplants.
by autologous stem cell transplantation (ASCT).
Most clinical trials suggest that more cells can be collected after chemo-
mobilization, but chemo-mobilization has not demonstrated superior
What is the current place of ASCT in myeloma?
outcomes while being associated with more toxicity, and the failure rate
As with other forms of therapy, the goals of ASCT are to achieve the maxi-
with chemo-mobilization is similar to the failure rate with GCSF alone.
mum depth and duration of response leading to the best overall survival.
Myeloma is the most common indication for high-dose chemotherapy with
What are the options for the myeloma patients who are not
ASCT in North America today. It remains the treatment associated with the
mobilized successfully?
highest CR rate in myeloma and, when compared to conventional chemo-
Years ago, the patients who were poor mobilizers, who failed to mobilize
therapy regiments, ASCT is associated with improved survival.
despite multiple attempts, were never able to proceed to transplant. Most
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Scientific & Clinical
PHASE II STUDY OF CARFILZOMIB IN PATIENTS WITH RELAPSED MYELOMA
Myeloma Today in conversation with Dr. Sundar Jagannath
At the 2009 annual meeting of the American Society
What conclusions did you reach as a result of
of Clinical Oncology (ASCO), IMF spoke with
the initial phase of this carfilzomib study?
Dr. Sundar Jagannath, the principal investigator of a
I feel that CFZ is a very active and very well-toler-
Phase II study of carfilzomib in patients with relapsed and
ated anti-myeloma agent. Eight out of ten patients
refractory multiple myeloma.
achieved response during cycle one, and 72% of
participants experienced either improvement or
Dr. Jagannath, at the recent ASCO meeting you presented
stabilization of their disease. Median time to pro-
the final results of your study of carfilzomib, a new
gression (TTP) was 6.2 months. Close to one out of
agent being investigated in myeloma. Would you please
five patients responded to treatment.
tell us more about this agent and your study findings?
Carfilzomib (CFZ) is a novel proteasome inhibitor of the
Single-agent CFZ achieved a TTP of >6 months
epoxyketone class that exhibits a high level of proteasome
in relapsed and refractory myeloma patients who
selectivity and demonstrats anti-tumor activity in bortezo-
failed available therapies. We are quite excited that
mib-resistant myeloma patients in Phase I studies.
the drug seems to be tolerated very well. Patients
stayed with this study for a median of eight months,
Our study, PX-171-003-A0, was an open-label, single-arm,
Sundar Jagannath, MD
which demonstrates that most study participants
multicenter study that enrolled myeloma patients who had
Chief, Multiple Myeloma Program,
Bone Marrow and Blood
tolerated the treatment well and that most of the
relapsed from more than two prior therapies, failed on
Stem Cell Transplantation
toxicities were manageable. The most common
therapy with bortezomib (Velcade®), and failed at least one
St. Vincent's Comprehensive
adverse events were fatigue, anemia, thrombo-
immunomodulatory agent (thalidomide or lenalidomide).
Cancer Center
cytopenia, nausea, upper respiratory infection,
The enrolled patients were refractory to last treatment while
New York, NY
increased creatinine, and diarrhea. As with most of
on, or within 60 days of last therapy, or had <25% response
to last therapy. Patients received CFZ 20mg/m2 intravenously two days per
the other side effects, peripheral neuropathy (PN) occurred in less than
week for three weeks (on days 1, 2, 8, 9, 15, and 16) of a 28-day cycle,
10% of participants. Importantly, exacerbation of pre-existing PN was rare,
for up to 12 cycles. Again, let me stress that all study participants had
and 80% of study participants had pre-existing PN.
exhausted all treatments currently available to them and their disease had
What is the next phase for this carfilzomib study?
progressed on their last therapy.
The study has been expanded to enroll an additional 250 patients in this
Forty-six patients were enrolled in the initial phase of the study, includ-
unmet medical need population at an escalated dose, and treatment has
ing 78% with progression on/within 60 days of last therapy and 22% with
been extended beyond a year. If this compound continues to prove to be
no response to last therapy. Thirty-nine patients completed at least one
an effective treatment for myeloma in the next phase of the study (PX-171-
cycle of CFZ, had measurable M-protein, and were evaluable for response.
004), we are hoping that the expanded trial will help expedite the drug
All patients had received prior bortezomib therapy, 91% had prior tha-
approval process for the use of CFZ in myeloma. MT
lidomide and 89% prior lenalidomide, and 83% had prior stem cell trans-
plant. All had failed combinations including anthracyclines (80%) and/or
Editor's Note: For more information, please see below, visit
www.myeloma.org, or call the IMF Hotline at 800-452-CURE (2873).
alkylating agents (94%).
Open-label, Single-arm, Phase II Study of Carfilzomib in Patients with Relapsed Multiple Myeloma:
Carfilzomib given at increasing doses with dexamethasone (PX-171-004)
Trial description: This is a single-arm study for patients who have
· Not responsive to standard front line therapy
relapsed, refractory or progressive disease after at least one but no more
· Systemic myeloma treatment within 3 weeks of study, radiation therapy
than 3 prior treatments for myeloma. The initial dose of carfilzomib will
or immunotherapy within 4 weeks of study or localized radiation
be increased if the drug is well tolerated. Both patients never treated with
therapy within 2 weeks of study
Velcade® and patients previously treated with Velcade® will be studied.
· Significant neuropathy (Grade 3, 4 or Grade 2 with pain)
Trial Objectives: To evaluate the best Overall Response Rate after 6 cycles
· Acute active infection requiring systemic antibiotics, antivirals or
of carfilzomib.
antifungals within 2 weeks of study
Inclusion criteria:
Locations and Trial Coordinator Telephone Contacts:
· 18 years or older
Mayo Clinic, Scottsdale, AZ: 480-301-4890
· Adequate ability to perform acts of daily living
Barnes-Jewish Hospital, St. Louis, MO: 314-454-8377
· Symptomatic myeloma with measurable disease
Hackensack University Medical Center, Hackensack, NJ: 210-336-8020
· Relapsed, refractory or progressive disease after at least one, but no
St. Vincent's Compr. Cancer Center, New York, NY: 212-604-6026
more than three treatments or regimens for multiple myeloma
MD Anderson Cancer Center, Houston, TX: 713-792-9559
Princess Margaret Hosp, Toronto, Ontario, Canada: 416-946-4501, x 5931
Exclusion Criteria:
· Non-secretory multiple myeloma or myeloma only measurable
This study continues to expand, adding new locations weekly, so please visit
by serum free light chain (SFLC) assay
www.myeloma.org or call the IMF Hotline at 800-452-CURE (2873) for the
most up-to-date list of trial sites.
800-452-CURE (2873)
9
Scientific & Clinical
CHARLES NEWMAN -- continued from page 4
SERGIO GIRALT -- continued from page 8
I understand that you are involved with the IMF cell phone
retrospective studies addressing mobilization have identified patient age,
collection program.
method of mobilization, time to stem cell mobilization, number of prior
regimens, and prior melphalan and/or radiation exposure as predictors of
The program has been a "win-win" initiative for all: it generates funds
patients failing to achieve a minimal dose. Parallel to this, other studies
for the IMF, provides donors with a tax deduction, places phones in the
have been exploring the biology of myeloma and the mechanism of how
hands of people in less developed nations, and protects the environment
cells move out of the bone marrow. The science is very elegant, with par-
by saving older cell phones from ending up at the garbage dump. I am in
allels between how stem cells find their home in the bone marrow. Stem
the cell phone reuse business, so when the IMF decided to initiate its cell
cells are designed to live as long as we live, and they are there to produce
phone donation program several years ago, my people were there to offer
all the blood cells and platelets that we need for our lifespan. The stem
any support they could provide.
cells "stick" with what are called adhesion molecules, the glue that holds
What is your outlook for the future?
the stem cells against the walls of the bone marrow to prevent them from
being released. Today, novel mobilization strategies are disrupting the
First, the IMF must continue to secure financial resources in order to con-
"glue" so the stem cells can separate themselves and circulate in the blood
tinue serving the myeloma community, and it is one of the Board's tasks
to improve collection yield and efficiency.
to help the Foundation in this regard. The IMF must continue to educate
more and more patients and physicians about myeloma. Through the IMF,
This is where plerixafor steps into the picture?
I have personally counseled 100-200 people in an effort to help them bet-
Plerixafor (also known as Mozobil®) is a drug that was originally devel-
ter understand the available options so that they might have the standard
oped for AIDS. During the clinical trials conducted with plerixafor for
of care that my wife has had. There is now so much more information
AIDS, an observation was made that patients taking this drug had very
about this disease than when it first entered our lives, but there is still
high white blood cell counts. Further studies showed that plerixafor
much work to be done to help improve patient outcomes while continu-
breaks the bond between stem cells and the walls of the marrow cells,
ing to make strides towards finding a cure for myeloma. MT
thereby releasing more stem cells into the bloodstream.
In myeloma and lymphoma, two important clinical trials have shown that
2009 WALDENSTRÖM'S AWARD -- continued from page 6
plerixafor is safe and effective in combination with GCSF and results in
increased stem cell mobilization in fewer apheresis days compared to
upon meetings where I had to plead the case for the use of PET scanning
GCSF alone.
in myeloma. In the beginning, I would see representatives of many other
Also, plerixafor showed to be effective in mobilizing adequate stem cells
cancer groups at the Medicare meetings who were trying to get PET scan-
in two thirds of the patients who had failed traditional mobilization tech-
ning approved for various diseases. At the last meeting, I was the only one
niques as demonstrated in the compassionate use protocol. In patients
representing myeloma, and the only other person in attendance represent-
with myeloma, plerixafor in combination with GCSF has also been shown
ing a disease group was an advocate for ovarian cancer. She and I were the
to be more effective as an initial mobilizing regimen than GCSF alone.
only ones there to present our cases and, in the end, Medicare approved
More studies need to be done with this agent to better define its role in
PET scanning only in myeloma and ovarian cancer. Clearly, perseverance
the treatment of myeloma, but we have found the use of plerixafor to be
paid off! The cancer groups that had given up were denied approval,
both safe and predictable (in terms of cell yields) as a mobilization agent.
although the technology might have been useful for them as well.
Plerixafor is a major advance in ASCT in myeloma. It has a very man-
What do you see as you look toward the future?
ageable toxicity profile, with the most common adverse events being
injection-site reaction and mild GI upset. It allows us to more efficiently
Luc Montagnier, who first identified the AIDS virus, is working with
collect larger numbers of cells from good responders, to mobilize patients
Howard Urnovitz and me on sequencing DNA and RNA in the blood;
who have failed mobilization, to help save patient resources, and to study
Luc has called these circulating nucleotides "Voyager DNA" and "Voyager
if transplanting very high numbers of stem cells can improve outcome for
RNA." It is possible to identify molecular patterns of disease that will be an
patients.
important way to both diagnose and monitor myeloma on an individual
patient basis. I am very interested in this project as I believe it will lead
Any closing comments?
to new approaches to cancer therapy. This would be a very important
High-dose melphalan is still recommended for eligible patients, and stem
way forward.
cell collection early in the course of therapy should be considered in all
patients eligible for ASCT. The decision of whether or not to pursue ASCT
Innovation is always challenging. In addition to the usual difficulties, the
must be made by the patient in consultation with their treating physician.
present economic climate has placed additional challenges in our path.
If a patient chooses to undergo ASCT, they don't necessarily need to incor-
But we must remain focused on our key goal improving outcomes for
porate plerixafor into their mobilization regimen but it can be very helpful
our patients so we must consider not only the cost of myeloma therapies
if they fail to mobilize without it.
but the cost effectiveness of therapies.
In closing, I would recommend that patients discuss with their doctors
The stimulus for me as a clinician continues to be working with
the benefits of plerixafor in combination with GCSF, as opposed to using
patients, thousands of patients over the years. They continue to be my
GCSF alone, especially since plerixafor does not add the significant toxici-
inspiration. MT
ties associated with stem cell mobilization using chemotherapy. MT
10
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Scientific & Clinical
IMWG STUDIES PATIENTS WHO HAVE EXHAUSTED THEIR TREATMENT OPTIONS
Myeloma Today in conversation with Dr. Shaji Kumar
Dr. Kumar, we would like to hear about your
Over the past decade, survival of newly diagnosed
current research project on behalf of the
patients has more than doubled. Data show sur-
International Myeloma Working Group (IMWG),
vival improvement for each year following 2000,
but first please tell us about the 1999 Mayo
which is directly related to the role played in
Clinic study of myeloma patients whose disease
myeloma treatment by the three novel agents I
relapsed?
mentioned earlier.
Up until approximately 10 years ago, there were
But we know that none of the three novel agents
relatively few therapies available for treating multiple
are curative, because the myeloma invariably
myeloma, and most of those therapies had been devel-
comes back sooner or later. And the introduc-
oped during the preceding 30 years. In 2000, investi-
tion of the novel agents has also brought forth
gators at the Mayo Clinic analyzed data pertaining to
new chal enges. Because we have significantly
myeloma patients who were treated at the Clinic and
improved the outcome for patients, the problem
whose disease came back after initial therapy. Here at
that we face today is that newer medications that
Mayo, we have long-term follow-up on our patients,
need to be studied for myeloma have a much
so we looked at patient outcomes from each time their
higher hurdle to overcome to demonstrate to the
disease relapsed from previous treatment. After each
Shaji Kumar, MD
regulatory authorities that a new drug warrants
relapse, we measured how long the patient responded
Associate Professor of Medicine
investigation because it is likely to make a differ-
to subsequent treatment, and how long they lived
Division of Hematology
ence for patients. This means that it has become
after the treatment failed.
Mayo Clinic
more difficult to show that newer drugs are
Rochester, MN
What was the significance of that study?
able to improve survival ever more than the cur-
That was a very interesting study because until that time we had not exam-
rently available medications. Clinical studies now require larger groups of
ined in detail what happened to myeloma patients post-relapse. Most of
patients, who must be followed for longer periods of time.
the investigations performed prior to that study focused on what happed
Doesn't that delay the process of getting the next promising anti-
after initial treatment up until the first relapse.
myeloma drug to patients?
Please tell us about the study follow-up.
That is exactly our concern. The three novel drugs currently available took
To follow up, we initiated a new study at Mayo Clinic in 2007, and our
four to five years to get to the marketplace. If the newer drugs follow the
findings were published in Blood in early 2008. We looked at data from
same path, it might take even longer to get them approved! Clearly, that
nearly 3,000 patients treated at the Clinic over a 36-year period. We sepa-
is just too long to wait.
rated the patients into six groups, based on the year of diagnosis. In the
How does that relate to the current IMWG study?
first four groups, which included patients diagnosed prior to 1994, we
saw very little improvement in patient survival. We saw improvement in
We hope that by analyzing the outcome of patients who have failed on all
the survival of patients who were diagnosed between 1994 and 2000, with
available therapies the current IMWG study will accelerate the process of
the data on the survival of patients diagnosed since 2000 being even better
drug approval. If we can show that the newer drugs being studied offer a
than for those who were diagnosed between 1994 and 2000.
clear survival benefit to patients who have no remaining approved treat-
ment options, this can become the new benchmark for evaluating newer
How did you interpret those findings?
compounds in clinical trials. This would help expedite bringing new use-
We think that what changed related primarily to two things: wider use
ful compounds to market.
and availability of stem cell transplantation, and the introduction of three
novel anti-myeloma agents (thalidomide, lenalidomide, and bortezomib)
For this research project, we are collecting data on a group of patients
that are very effective at treating the disease. We know that both these
who have become nonresponsive or refractory to all the novel agents
components played a role in our findings, because we saw improved sur-
available to them. The data is being provided by investigators at 13 myelo-
vival in newly diagnosed patients and also in a smaller subset of patients
ma centers (six in the US plus seven in Europe). The availability of novel
who relapsed following a stem cell transplant. Of the three novel agents,
agents varies from country to country, but the data gives us a broad global
lenalidomide and bortezomib have been proven to improve overall sur-
spectrum of the impact of the newer medications. We are looking at how
vival, both when used as part of initial anti-myeloma therapy and in the
these patients have been doing from the time they became unresponsive
relapse setting.
to available treatments.
Now please tell us about the analysis you are currently performing
Based on prior studies, we are targeting a group of 300 patients who have
on behalf of the IMWG.
active myeloma and no remaining means to control the disease. We feel
The IMWG project was undertaken to find out what happens to myeloma
that this would give us enough data for a strong study leading to a good
patients who have exhausted all their treatment options.
conclusion. The patients are not "enrolled" in this study in the traditional
sense, as what we are doing is analyzing existing medical records of non-
Over the last 10 years, we have seen a major shift both in available treat-
responsive patients retrospectively, and tracking what happened to those
ments and in the outcomes for patients with myeloma. In 2009, we are
patients over time.
looking at a very different landscape of available anti-myeloma therapies.
Continues on Page 16
800-452-CURE (2873)
11
Special Event 2009 Robert A. Kyle Lifetime Achievement Award
HONORING PROF. JEAN-LUC HAROUSSEAU AND HIS WORK
The Award
The Seventh Annual Robert A. Kyle
Nearly a century ago, Dr. William Mayo set the
Lifetime Achievement Award
standard for treatment of patients at Mayo
The Recipient
Clinic with these words: "The needs of the patient
are the only needs to be considered." In 2003, the
Prof. Jean-Luc Harousseau
IMF bestowed the first annual Lifetime Achievement
Professor of Hematology and Director of the Cancer Center
Award to a physician whose work against multiple
René Gauducheau at Nantes, France
myeloma reflects the dedication
and compassion inherent in Dr. Mayo's vow. The IMF
Prof.HarousseauwasborninNantes
chose to name this award for Dr. Robert Kyle, whose
in 1948, where he has spent almost
life and work give new meaning to Dr. Mayo's words.
all his personal and professional life.
He joined the faculty of medicine in
In his more than 40 years at Mayo Clinic, Dr. Kyle has
Nantes in 1965, and moved to Paris
never wavered from his commitment to the needs
in 1972, where he spent four years
of patients with myeloma. He has devoted his life's
as Interne des Hôpitaux de Paris. He
Dr. Robert Kyle
work to them. He has gained recognition the world
was then appointed as Assistant in the
over as a pioneer and respected leader in the advancement of research,
Department of Hematology chaired by
clinical treatment, and education about myeloma.
Prof. Jean Bernard at Hôpital St-Louis.
When Brian Novis sought to learn more about his disease, he was looking
During this period he trained in hema-
for the finest doctor available to help him. When he heard about Dr. Kyle,
tology and his main topic was the treatment of acute leukemias.
Brian didn't know at the time that Dr. Kyle was consid-
In 1980, at the age of 32, he became the
ered to be the "grandfather" of myeloma treatment.
youngest professor of hematology in France.
Later, when Brian Novis and Dr. Brian Durie decided to
He returned to Nantes where he creat-
create an international foundation dedicated to help-
ed the department of hematology of the
ing others with myeloma, Dr. Kyle was the first person
University Hospital, including the Pediatric
they contacted. Dr. Kyle agreed to collaborate with the
Onco-Hematology Unit and the Bone Marrow
two Brians, and became a founding member of the
Transplantation Unit, with the help of Prof.
International Myeloma Foundation's Board of Directors
Noël Milpied. He became Head of Department
and chairman of its Scientific Advisory Board, a position
when he was only 36. At that time he was
he still holds today.
mostly involved in autologous and allogeneic
stem cell transplantation, and he created the
Dr. Kyle is a sought-after presenter at IMF clinical con-
multicentric French group GOELAMS initially
ferences and workshops, and is the most frequently requested speaker at
focused on the treatment of acute myeloid leukemia.
IMF Patient & Family Seminars. Through IMF programs, Dr. Kyle has made
himself accessible to thousands of myeloma patients and their families
Prof. Harousseau's interest in myeloma started in 1983 with the pub-
around the world. His guidance and encouragement are as important to
lication in Lancet of "High-dose melphalan in high-risk myeloma" by
the IMF today as when the IMF first began.
Drs. MacElwain and Powles. He became one of the pioneers of high-
dose therapy in myeloma, and was also one of the founders of the
WhenDr.KylewasfirstapproachedaboutreceivingtheRobertA.KyleLifetime
Intergroupe Francophone du Myélome
Achievement Award, his response to Susie Novis was, "I'm not done yet."
(IFM) with Prof. Michel Attal and Prof.
His humility, dedication, sense of humor, and caring and compassionate
Thierry Facon. The IFM has conducted
nature are among the many reasons for which the IMF named this award
a number of randomized trials that
in his honor.
have contributed significantly to the
major improvements in the prognosis
of myeloma in the past 20 years.
The major contribution of IFM trials
was initially in the field of high-dose
therapy (conventional chemotherapy
Prof. and Mrs.Harousseau
versus autologous transplantation, conditioning regimen, single versus
double transplantation, tandem auto versus mini allogeneic transplanta-
tion). More recently, the IFM introduced novel agents in frontline ther-
apy (thalidomide as maintenance, MP-thalidomide versus MP in elderly
Left to right: Prof. Mario Boccadoro,
Susie Novis, Prof. Jean-Luc Harousseau,
patients, bortezomib in the induction treatment). The large number of
Florence Harousseau, and Dr. Brian G.M. Durie
12
www.myeloma.org
Special Event 2009 Robert A. Kyle Lifetime Achievement Award
patients recruited for the IFM trials also
Dr. Kyle asked both Prof. Heinz Ludwig and
permitted analysis of prognostic factors
Prof. Mario Boccadoro to stand for a nice round
and of the impact of complete or very
of applause to recognize them as being previ-
good partial response achievement.
ous recipients of the Robert A. Kyle Lifetime
Achievement Award.
In the early 1990s, Prof. Harousseau
convinced Dr. Régis Bataille, who was
Prof. Philippe Moreau, who has worked closely with Prof. Harousseu
already a world-renowned researcher in
for many years, gave a moving speech about the importance of
myeloma, to join him in Nantes and build
Prof. Harousseau's contribution to the field of myeloma, his legacy as
a Center for Research on Myeloma "from
co-founder of the Intergroupe Francophone du Myélome, the French
bench to bedside." Their work has ranged
national myeloma research consortium, and his tremendous dedication
from laboratory research on the phenotype of the malignant plasma
to myeloma patients in France and around the world. MT
cell, bone disease, and mechanisms of apoptosis and resistance with
Dr. Martine Amiot and Dr. Catherine Pellat; to clinical trials with Dr. Philippe
Moreau; to translational research, including FISH, gene expression
profile, and more recently SNP-arrays, with Hervé Avet-Loiseau.
Prof. Harousseau is the author
or co-author of more than 400
peer-reviewed articles, includ-
ing papers in high-impact factor
journals (New England Journal
Prof. Philippe Moreau of the CHU de Nantes gave an extensive and
of Medicine, Blood, Journal of
entertaining speech about Prof. Harousseau's remarkable tenure there
Clinical Oncology) and of a num-
ber of book chapters. He is very
involved in the life of the French Society of Hematology, and is a member
of several scientific societies. He has a passion for education and is proud
of having created in Nantes one of the best French teams of coworkers in
the field of hematology. In October 2008, he left the department of hema-
tology he created and developed, and has been appointed as Director of
the Cancer Center of Nantes.
The Ceremony
The Seventh Annual Robert A. Kyle Lifetime Achievement Award ceremony
Dr. Catherine Pellat and
Dr. Michel Delforge and Greg Brozeit
took place on May 15 in Monte Carlo, Monaco. Along with many of his col-
Dr. Brain G.M. Durie
leagues from around Europe, Prof. Harousseau
was in Monte Carlo participating as faculty for
the already-scheduled New Developments in
Multiple Myeloma Clinical Conference. The
Fairmont Hotel was the perfect venue for both
the conference and the award ceremony.
A trio of classical musicians greeted Prof.
Harousseau, his wife Florence, and their invited
Prof. Heinz Ludwig and
guests for a celebratory glass of champagne and
David Girard, Susie Novis
Dr. Brian G.M. Durie
Prof. Jean-Luc Harousseau
and Prof. Antonio Palumbo
hors d'oeuvres. Susie Novis and Dr. Brian Durie
gave a short welcome to the more than 150 colleagues and friends in
The IMF would like to thank the following sponsors for their support
attendance before announc-
of this prestigious event:
ing the commencement of
the special dinner in Prof.
Platinum Sponsor
Harousseau's honor.
Janssen- Cilag
After dinner, Drs. Kyle and
Bronze Sponsors
Durie spoke about the impor-
The Binding Site
tance of Prof. Harousseau's
Genentech
many
contributions
to
Genzyme
myeloma research and treat-
Prof. Jean-Luc Harousseau (left) being
MDS Oncology
ment. During the ceremony,
congratulated by Prof. Jesús San Miguel
Proteolix
800-452-CURE (2873)
13
Scientific & Clinical
IMW -- continued from page 7
Dr. William Bensinger discussed "Allogeneic donor transplants for mul-
ment was conducted should be reported, and should be made before
tiple myeloma in Seattle." He presented the results of allo-ASCT in 278
initiation of subsequent therapies. Time to best response should be
patients treated from 1977 to 2008. Dr. Bensinger suggested that post-
reported, otherwise studies can't be compared.
transplant maintenance therapy with one of the novel agents and more
Dr. Jesús San Miguel discussed additional definitions, including the
targeted conditioning regimens might improve outcomes.
distinction between relapsed-refractory and primary refractory disease.
Dr. Thierry Facon presented "Post-transplant maintenance." He said that
It was suggested to add a qualifier describing which type of therapy or
the advent of novel agents and their use in combination therapies have
drug(s) to which the disease was refractory or non-responsive. Efficacy
contributed to achieving optimal regimens for post-transplant consolida-
results for Phase III trials should include OS (overall survival), TTP, PFS
tion and maintenance therapies. Dr. Facon reviewed trial results for main-
(progression-free survival), DOR (duration of response), and, if possible,
tenance therapy with thalidomide. Bortezomib and lenalidomide are also
TNT (time to next therapy, defined as time from registration on a trial
being tested for consolidation/maintenance as single agents and in com-
to the next treatment or death due to any cause, whichever comes first),
binations. He addressed Phase III trials to assess the role of consolidation
5-year OS and 10-year OS.
and maintenance post-transplant, which may answer some of the outstand-
ing questions concerning post-transplant consolidation and maintenance.
Guidelines for Risk Stratification in Myeloma
Dr. Nikhil Munshi said that the main purpose of risk stratification at this
Pro and Con Sessions
time should be to update prognostic factors in the era of novel therapies,
Simultaneous versus Sequential use of Novel Agents
not to make a decision about treatment. Because there is evidence that
Dr. Morie Gertz argued for simultaneous use of novel agents in induc-
risk factors change at relapse, patients can be reassessed, and if they have
tion therapy and Dr. Joan Bladé argued for sequential use. The concept
acquired high risk features, they should be reclassified. He also said that
of conventional therapy is changing, and there are no data showing that
the International Staging System (ISS) needs to be validated for newer
sequential treatment is inferior to combination therapy. It was also noted
agents, and some modifications in the future should be expected.
that different populations of patients may require different approaches.
Although the Durie-Salmon staging system for determining tumor mass is
Risk Stratification
still the standard, it could be replaced by CRAB (calcium elevation, renal
insufficiency, anemia, bone lesions) criteria. Using MRI for response evalu-
Dr. Angela Dispenzieri favors basing therapy on risk stratification, which is
ation requires further study. Genomic studies, including gene expression
based on patient characteristics, including age, performance status, renal
profiling (GEP), single nucleotide polymorphism (SNP) arrays, and com-
function, and co-morbidities; and on tumor characteristics. Dr. Jesús San
parative genomic hybridization (CGH) have their place in research, but are
Miguel is against basing therapy on risk stratification, but says treatment
not sufficiently validated for general clinical use.
can be individualized. In the ensuing discussion, Dr. Rajkumar stated that
this was not the time for risk stratification, and urged putting patients in
Guidelines for Standard Investigative Work-up in Myeloma
trials, doing a biologic analysis up front, carefully analyzing response, then
Dr. Robert Kyle reviewed the minimum tests required at diagnosis and for
tailoring treatment to specific patients. He suggested offering a high risk
prognostic evaluation for patients. These include a history and physical,
treatment approach to patients who wouldn't benefit as much as those
which should detect any co-morbidities such as heart disease, thrombosis,
with standard risk disease.
hypertension, renal, liver, or lung disease, or other conditions that would
Allogeneic Transplantation
affect treatment. Blood tests include a complete blood count (CBC),
differential, and peripheral smear; chemistry panel with calcium, cre-
Dr. Jayesh Mehta favors using allogeneic transplantation while Dr. Jean-
atinine, electrolytes, liver function tests, urea, albumin (preferably using
Paul Fermand is against it. The transplant-associated mortality for allo-SCT
nephelometry), serum protein electrophoresis (SPEP), immunofixation
is 12% vs. 5% for ASCT at 2 years. Improvement should focus on method-
electrophoresis (IFE), and serum FLC; and urinalysis, including a 24-hour
ology, including new drugs, reducing GvHD, and keeping GvM. Dr. Mehta
urine test for protein, creatinine clearance, urinary protein electropho-
said allo-SCT should be based on prognostic factors and be used to treat
resis (UPEP), and IFE. Bone marrow aspirates or biopsies are mandatory
patients with very high risk disease and poor prognosis.
to confirm a diagnosis of multiple myeloma (>10% clonal plasma cells).
Consensus Panels
Beta-2-microglobulin is needed to determine the ISS stage, and LDH is
Guidelines for the Uniform Reporting of Clinical Trials
also useful for risk assessment. Other useful tests include standard cyto-
in Myeloma
genetics, and FISH on sorted bone marrow plasma cells. Imaging tests
Dr. Vincent Rajkumar discussed issues concerning response criteria. The
include a skeletal survey; MRI of the spine and pelvis are mandatory,
IMWG Uniform Response Criteria are recommended for use in future
particularly to rule out spinal compression. There is no definite role for
clinical trials. PET (positron emission tomography) and MRI (magnetic
PET-CT, which may be helpful for extramedullary disease. MT
resonance imaging) will not be incorporated formally into the response
Editor's Note: Lynne Lederman, PhD, is a medical writer based in
criteria for assessing the depth of response but additional single center
Mamaroneck, NY. To read the full text of her report, please visit the IMF
clinical studies are encouraged. The time at which each response assess-
website at www.myeloma.org.
14
www.myeloma.org
News & Notes
New compound enters myeloma
"With PET scans doctors can visualize the whole body to see the full extent
research pipeline
of disease on initial diagnosis, follow the response to treatment more
CEP-18770, a boronic-acid based compound, is a new research drug being
accurately, and better determine when further treatment is needed and
developed by Cephalon as a possible new treatment for multiple myelo-
when it is not," said Dr. Durie. "In the national demonstration project,
ma. One compound from this drug class that has already been approved
the course of treatment for myeloma was changed almost half the time
for use in myeloma is bortezomib (Velcade®). In pre-clinical (animal)
with the use of PET scans. That's the highest impact for any cancers in
studies, CEP-18770 showed superior activity in myeloma models versus
the project."
Velcade. Most importantly, it was able to overcome Velcade resistance. In
addition, CEP 18770 showed a safety profile with significantly less toxicity
Dr. Siegel added, "There are times when standard testing indicates
to the nervous system compared to Velcade.
patients are in complete remission, but with PET scans we can see
that lesions, areas of cancer, are present, indicating that more or more
The first in human (Phase I) study with CEP-18770 is being conducted in
aggressive treatment is required. Likewise, when we can be certain there
Italy and Switzerland. The research study is enrolling patients with mul-
tiple types of cancers. The trial's goals are to:
is no detectable cancer, we can help patients avoid needless and expen-
sive treatments. We are pleased to have contributed to this change in
· determine the safety of the drug (side effects)
Medicare coverage."
· determine if patients are able to take the drug without too many side
effects (the tolerability of the drug)
PET scans utilize a sugar analogue that concentrates in cancer cells and
· measure the amount of drug in the patient's blood [pharmacokinetics
emits a radioactive tracer that can be detected and located by the scan.
(PK) and pharmacodynamics (PD)]
Whole body PET scans can be used to detect unsuspected or new out-
breaks of multiple myeloma both to aid in initial diagnosis and to assess
Data from the Phase I study set the highest dose at which the study drug
ongoing treatment. PET scans have been approved for several cancers
should be given (maximum tolerated dose). It also looked at the PK, PD
and safety profile. This study will also test if CEP-18770 is effective and safe
including breast, colon cancer and lymphoma. The new decision adds
for patients with multiple myeloma.
myeloma and ovarian cancer to the list.
Cephalon is planning to conduct an open-label, Phase I/Phase II research
"This is not only great news for patients, it is cost effective," said Michael
study with CEP-18770 in patients with relapsed and refractory multiple
Katz, board member of the IMF. "PET scans can cover the entire body and
myeloma. The Phase I portion of the trial will set the dose needed for
in our experience with myeloma patients, depending on their insurance
this patient population (maximum tolerated dose). Once the Phase I of
coverage, PET scans can cost significantly less than other imaging tech-
the trial is completed, the Phase II portion will start. This portion will
niques such as CT or MRI and provide better information when used as
look to see if CEP-18770 in patients with relapsed and refractory multiple
whole body scans. We believe many private insurers will now follow this
myeloma is effective and safe.
lead and with more widespread use, we believe the full potential of this
The Phase II portion of this trial will have two stages. Stage 1 will enroll
important medical technology can be realized. The IMF is pleased to have
23 patients and if enough patients have a response to CEP-18770 the trial
played a leading role in encouraging this decision."
will begin stage 2. Thirty-two patients will be enrolled during stage 2. All
patients will receive CEP 18770 intravenously in a 21 day cycle, for up to
Pesticide exposure and MGUS
8 cycles (24 weeks). During this Phase II portion of the trial, patients with
As reported in Blood (18 June 2009, Vol. 113, No. 25, pp. 6386-6391),
poor response to CEP-18770 will have low dose dexamethasone (a man-
pesticides are associated with excess risk of multiple myeloma, albeit
made adrenocortical steroid) added into the regimen.
inconclusively. The study looked at 678 men (ages 30 to 94) to assess the
After 8 cycles of initial therapy, patients with responding or stable disease
risk of monoclonal gammopathy of undetermined significance (MGUS).
may continue CEP-18770 maintenance treatment for another eight 21-day
Age-adjusted prevalence estimates of MGUS were compared with MGUS
cycles. Seventy to ninety patients in total will be enrolled in this Phase I/
prevalence in 9,469 men from Minnesota, and associations between pesti-
Phase II study. Thirty clinical centers in the USA, Canada and Europe will
cide exposures and MGUS prevalence were assessed by logistic regression
be used. Spain, Belgium, and France may participate in the trial. The study
models adjusted for age and education level. Among 555 study participants
will likely start by December 2009.
older than 50 years, 38 were found to have MGUS, yielding a prevalence of
Medicare to cover PET scans
6.8%. Compared with men from Minnesota, the age-adjusted prevalence
The decision by the Centers for Medicare and Medicaid Services (CMS)
of MGUS was higher among male pesticide applicators. Increased risk of
to cover the use of positron emission tomography (PET scans) in mul-
MGUS prevalence was observed among users of the chlorinated insecti-
tiple myeloma can significantly change the course of treatment for many
cide dieldrin, the fumigant mixture carbon-tetrachloride/carbon disulfide,
patients. The case for using PET scans in myeloma was published in the
and the fungicide chlorothalonil. The prevalence of MGUS among pesti-
Journal of Nuclear Medicine and presented to CMS by IMF chairman and
cide applicators was twice that in a population-based sample of men from
medical director Dr. Brian G.M. Durie with the support of Dr. Barry Siegel,
Minnesota, adding support to the hypothesis that specific pesticides are
co-chair of the National Oncologic PET Registry, a comprehensive national
causatively linked to the origins of myeloma. MT
study of PET scans in cancer.
800-452-CURE (2873)
15
Supportive Care
IMF HOTLINE COORDINATORS ANSWER YOUR QUESTIONS
The IMF Hotline 800-452-CURE (2873) is staffed by Paul Hewitt, Missy Klepetar, Nancy Baxter, and Debbie Birns.
The phone lines are open Monday through Thursday, 9am to 4pm, and Friday, 9am to 2pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
I recently viewed a news item from the
Because of the fear of stimulating
University of Rochester Medical Center
the growth of cancer, says Dr. David
about a clinical trial for patients with
Roodman, head of the myeloma pro-
a history of non-healing bone fractures
gram at the University of Pittsburgh
who were given FORTEO® and then
and noted researcher in the area
healed rapidly. Can this drug be given
of myeloma-related bone disease,
to patients with multiple myeloma who
FORTEO has not been used in
have lytic lesions and/or fractures to
patients with cancer. It was tested
help heal their bones?
in a mouse model of myeloma at the
FORTEO® (teriparatide for injection) is
University of Arkansas for Medical
synthetic parathyroid hormone (PTH)
Sciences by Dr. Shmuel Yaccoby, who
approved in 2002 by the FDA for the treat-
found that PTH increased bone for-
ment of men and women with osteoporosis
Paul Hewitt, Missy Klepetar, Nancy Baxter, and Debbie Birns
mation in the myelomatous bone.
who are at risk of bone fracture. PTH stimulates the formation of new
There was no evidence that FORTEO
bone and increases bone mineral density and bone strength.
increased the growth of myeloma cells.
The Medication Guide for patients that accompanies each prescription for
Dr. Noopur Raje, who is head of the myeloma program at Massachusetts
FORTEO states: "As part of drug testing, teriparatide, the active ingredient
General Hospital, and who is also involved in research with myeloma-
in FORTEO, was given to rats for a significant part of their lifetime. In
related bone disease, cautions that myeloma patients avoid using Forteo,
these studies, teriparatide caused some rats to develop osteosarcoma, a
given the complete lack of clinical data in the myeloma setting. Dr. Raje
bone cancer... It is not known if humans treated with FORTEO also have
and her group are currently conducting research with bone growth-stimu-
a higher chance of getting osteosarcoma."
lating agents ACE-011 and BHQ880, an anti-DKK-1 antibody.
The warning that is included with the Medication Guide states that,
There have been no trials with FORTEO in myeloma patients. FORTEO
"patients should not use FORTEO if they have ever been diagnosed with
should therefore not be taken by myeloma patients outside the context
a bone cancer or with other cancers that have spread (metastasized) to
of a clinical trial. At the present time, there is no clinical trial to test
the bone."
FORTEO's safety and efficacy in myeloma patients. MT
SHAJI KUMAR -- continued from page 11
The project is ongoing. We have already developed a very detailed case
Unfortunately, we still have no cure for myeloma at present so, sooner or
report form to collect data regarding these patients, Dr. John Crowley and
later, all patients will relapse. We are hoping that the ongoing research will
the investigators at Cancer Research And Biostatistics (CRAB) will analyze
make it possible to provide each patient with an effective treatment option
this data. We are hoping to have enough data analyzed in time to submit
whenever their disease relapses.
our findings for presentation at the 51st Annual Meeting and Exposition
We are getting closer to myeloma becoming a chronic disease that can
of the American Society of Hematology (ASH).
be kept under control, and we are continuing to press ahead towards
For a patient to have failed on all available anti-myeloma therapies,
curative solutions that will change the biology and the natural history of
does that mean that proportionately more of the patients you are
the disease. It is conceivable for the cure to be the result of combining
studying are longer-term survivors?
currently available therapies, but we need to continue to develop new
No, not necessarily. Much is determined by disease biology. Myeloma
medications. Also, myeloma is not just one disease it is a heterogeneous
patients with very aggressive and nonresponsive disease might reach the
illness and one approach may not be enough to cure it, so we need to
point of exhausting their treatment options within a one- or two-year
continue to improve our understanding of its biology.
period post-diagnosis. Myeloma patients with indolent disease may arrive
There are many ongoing studies using new cutting-edge techniques to
at the same point of non-responsiveness after a decade or more post-
better understand myeloma from a genetic perspective. It is our hope that
diagnosis. While such two patients have different disease biology and
if we better understand the genetic changes that occur in myeloma, we
history, they are similar that they have no remaining treatment options.
might be able to find where we can intervene in the process of disease
Given the data you have examined so far, what is the overall trend
development, either before or after the disease becomes cancer. This is
you are seeing and what is your personal outlook for the near
probably more true for myeloma that for many other diseases given the
future in the field of myeloma?
variety of changes we see in the myeloma cells.
We know that people who are living with myeloma today are likely to
The quest continues. Given the progress made in the field of myeloma
survive longer and to maintain a higher quality of life than patients from
over the past decade, I am optimistic of what we will be able to accomplish
decades past.
in the years to come. MT
16
www.myeloma.org
Patient & Family Seminar
A PATIENT SEEKS CONTINUED MM EDUCATION
Myeloma Today in conversation with Joan Marx
Was the recent Patient & Family Seminar in San Francisco the first
The variety of topics presented at IMF seminars is quite impressive. In
IMF educational meeting you've attended?
listening to the different doctors' presentations, it quickly becomes clear
No. The first time I attended an IMF seminar was in January 2006, also in
that different physicians follow different philosophical approaches to
San Francisco. I was initially diagnosed with smoldering myeloma in 2001
treating myeloma. For example, Dr. Durie's philosophical approach seems
but, until early 2006, I was told that the disease did not require treatment.
to be more about finding the lowest effective dose of treatment rather
Shortly before the 2006 San Francisco seminar, the standard laboratory
than about firing the biggest guns in a patient's potential anti-myeloma
markers showed that my numbers had changed, and my oncologist told
arsenal, and this approach resonates with me. Another patient might find
me that it was time to start treatment for my myeloma. After speaking with
more resonance with a different approach to the disease. I feel that it is
my doctor, I sought a second opinion, then another "second" opinion.
important for all patients to arrive at the realization of just how individual
Although those opinions came from doctors at respected institutions,
myeloma and its treatments are, and to choose a path that best suits their
none of them were expert in the field of myeloma. In fact, the last consult
thinking and their lifestyle.
was terrible it made me feels like the doctor was simply nudging me
Has exposure to other patients been useful to you?
towards a bone marrow transplant. Luckily, by that time I had found the
online myeloma listserv forum and had also joined the local Bay Area
Yes. The IMF seminar environment is great for meeting other patients.
Multiple Myeloma Support Group. During group meetings, I learned
Intrinsically, exposure to other people is very useful, and the variety of
about the PET scan and the Freelite assay, neither of which had ever been
opinions and experiences represented at the IMF seminar is hard to match
mentioned by my doctor, and I had both tests performed. Then one of my
elsewhere. I find that I store information in my brain for possible future
fellow support group members, Dave Brown (see page 21), who by that
use, and I've collected a lot of helpful info from the many patients who
time was already a long-term myeloma survivor, advised me to attend the
have shared their experiences at IMF seminars. It's hard to cite just one
IMF seminar.
example because there have been so many.
But meeting long-term myeloma survivors
What was your experience at your first IMF seminar?
has been particularly encouraging. Even
I found the experience to be extremely valuable. It was really wonderful.
now, eight years after my diagnosis, I find
The IMF Patient & Family Seminar program gathers together terrific faculty
their stories reassuring and inspiring. They
members, whose presentations are always interesting and informative.
help me keep an eye on what is possible
But, in my opinion, the question and answer periods that follow the ses-
for me to achieve, statistics notwithstand-
sions are equally educational and offer a glimpse into a wide variety of
ing. Those who were diagnosed with myeloma before me did not have
myeloma patient experiences. In addition, I found that the IMF meeting
the treatment options that I am likely to have, and yet I have met many
environment offered me an unprecedented opportunity to speak with the
patients who have had the disease for 20+ years and they are doing well.
myeloma specialists who were part of the seminar faculty.
Of course, when I meet such patients at IMF seminars or at the meetings
of my local support group, I am aware that these are people who clearly
Specifically, at the first IMF
value myeloma education.
seminar I attended, my husband
approached Dr. Mort Coleman
How do IMF seminars help keep you up to date on developments
after the doctor's breakout ses-
in the field?
sion. I found the two of them talk-
IMF seminars are a great resource for the latest information about myelo-
ing in the hallway and joined the
ma. They help patients and caregivers get a more clear sense of where
discussion about my case. I got
expert medical opinion is at the present moment. We need to know what
more individual attention from
key questions are being addressed by myeloma researchers and clinicians.
Dr. Coleman, right then and there
At some point, all of us need to ask, "Am I better off opting for treatment
standing in that informal setting,
now, or saving treatment options for later? If I choose treatment with a
than I had ever received from any physician during any medical appoint-
combination of novel anti-myeloma agents, should I reserve at least one of
ment! As a result of my mini-consult with Dr. Coleman, and my subse-
those agents for a later time in case I might have a relapse or if my disease
quent telephone consultation with Dr. Brian Durie, it was established that
becomes refractory to other drugs?" The IMF seminars have been very
treatment was not needed for my myeloma at that time. In fact, I have yet
helpful to me in getting a handle on those topics.
to require any anti-myeloma therapies. I feel so blessed to have had the
opportunity to benefit from the intervention of these two doctors.
Do you plan to continue attending IMF seminars in the future?
My first experience was so wonderful that I've decided to keep going
In general, what aspects of the seminar experience have you found
back both to learn what's new and to deepen my understanding of what I
to be of greatest benefit to you as a patient?
already know. The seminar environment encourages patients to be active
First, I'd like to reiterate that having direct face-to-face contact with the
participants in their own care. The most important lesson I've learned
myeloma experts who present at these seminars is truly invaluable. I have
from attending IMF seminars is that the ultimate responsibility for making
found them to be very receptive to questions and very willing to offer
decisions about myeloma treatment rests with each individual patient, not
information when a patient requires further explanation in response to
with his or her doctor. And this is the lesson I would most like to share
his or her question.
with your readers. MT
800-452-CURE (2873)
17
Spotlight on Advocacy
"CANCER PATIENT STATEMENT OF PRINCIPLES" UNVEILED AT ASCO MEETING
Acoalition of cancer patient advocacy organizations led by the Myelodysplastic Syndromes Foundation. "Oral drugs should have the
International Myeloma Foundation (IMF) and the Myelodysplastic
same coverage as hospital-based procedures; research and innovation
Syndromes Foundation (MDSF), unveiled a patient "Statement of
must be encouraged and supported; and for fatal diseases, the criteria for
Principles" at the annual meeting of the American Society for Clinical
drug approvals should emphasize expedited approval and ready access
Oncology (ASCO) in Orlando, Florida. The principles, issued on behalf of
to them."
patients and caregivers, state:
The patient advocacy organizations supporting these
· Prevention is the key to reducing the
principles believe they can make initial progress work-
burden of cancer
ing to resolve the critical disparity in insurance coverage.
· Continuing innovation is critical to early
Medicare and many private insurance programs require
diagnosis and better treatment
higher deductibles and co-payments for oral drugs than
· Equality of access to care is imperative
for intravenous drugs and hospital-based procedures.
· Early approval of new treatments for deadly
Because private insurance is regulated at the state level,
cancers is essential
Oregon, Indiana, and now Iowa have laws requiring equal
· Patients who have exhausted approved
coverage for oral and intravenous drugs, with similar laws
therapies need simplified access to
Susie Novis and Dr. Brian G.M Durie
pending in several additional states and federal legislation
experimental agents whenever possible
sign the Statement of Principles at ASCO introduced in Congress.
"The application of these principles is especially important to patients
Former NFL linebacker Elijah Alexander, a myeloma patient and founder
diagnosed with any of the eight lethal cancers, those that have five-year
of the Tackle Myeloma Foundation, says this insurance inequity must end:
survival rates of less than 50 percent," said Susie Novis, president and
"This unequal coverage is unreasonable and unfair. I just take a pill at
co-founder of the IMF. "These cancers, including multiple myeloma, will
home, I feel good and I'm again active in my work and with my family. As
cause nearly half the 560,000* cancer deaths projected in America this
patients we should be able to take advantage of the best care, and not be
year. This is one of the key reasons we must assure that all patients have
limited to what our insurance will cover."
access to well-trained specialists and that we continue to develop newer,
The Statement of Principles is in keeping with sessions at the ASCO
better treatments until there is a cure."
conference that go beyond clinical trial data to discuss the impact of
"When patients are diagnosed with cancer, their concern should be
financial issues on access to, compliance with, and reimbursement for
managing their disease, not reimbursement for their treatments," said
cancer therapies. MT
Kathy Heptinstall, BSN, RN, operating director and co-founder of the
*Source: Cancer Facts & Figures 2009, American Cancer Society
THE CANCER PATIENT STATEMENT OF PRINCIPLES:
Prevention, Innovation, Access, and Early Approvals
PRINCIPLE 1: Prevention is the key to reducing the burden of cancer. We must
provided or the mechanism of delivery
support every reasonable attempt to encourage studies of cause and prevention
· Oral drugs should have the same coverage as intravenous drugs, surgery,
to reduce the number of new cancer cases.
radiation, transplantation, etc.
· A study in the Journal of Clinical Oncology projects that the number of new
· The Medicare donut hole is an arbitrary and unfair burden on our most
cancer cases diagnosed each year will jump 45 percent in the next 20 years.
vulnerable citizens.
· In multiple myeloma an even greater increase (57%) is projected, and we are
PRINCIPLE 4: National policies and procedures for early approval of new treat-
already seeing increasing diagnoses in patients under age 65 including patients
ments for cancer and other deadly diseases need to be reformed and streamlined.
in their thirties, in what was once a "rare disease of the elderly."
· In the interests of patients with disorders with a five-year survival rate of less
PRINCIPLE 2: Continuing innovation is critical to the early diagnosis and the
than 50 percent, the emphasis should be on proof of effectiveness and early
more effective and safer treatment of the vast majority of patients with cancer
availability, with full disclosure of risk for adverse effects.
· We are in full support of the tenets of the 21st Century Cancer ALERT Act and
· A more efficient mechanism is needed for early approval of off-label uses of
other federal initiatives that support and encourage research.
already approved medications, possibly based on registry data, actual clinical
· We believe in the importance of new and better tests to ensure the early
practice, peer-reviewed studies and NCCN guidelines without the expense and
diagnosis of all clinically significant forms of cancer.
delay of complex and time-consuming clinical trials.
· We believe a deep, diverse pipeline of new and better treatments will lead to
PRINCIPLE 5: An efficient and effective mechanism is needed to permit access to
better outcomes and a better quality of life for all patients.
unapproved and experimental therapies for patients who have exhausted other
· We believe in full funding of legislation that promotes and encourages drug
available possibilities.
and biomarker research and development intended to bring new options for
· In the United Kingdom, in 2008, the Department of Health gave approval to a
patients in need.
network of 19 hospital units where terminally ill cancer patients can volunteer
PRINCIPLE 3: Equality of access (and equality of insurance coverage) should
to participate in trials of experimental cancer therapies that may be years away
be available to al patients for al approved cancer treatments.
from approval.
· Every cancer patient should have access to the treatments recommended by
· It should be easy, not difficult, for patients who have run out of other options
their physicians.
to gain access to investigational drugs whenever possible with appropriate
· Patients should not suffer from cost discrimination based on the type of therapy
clinical input.
18
www.myeloma.org
Support Groups
PEOPLE HELPING PEOPLE
You are never alone in your bat le against myeloma
Support groups walk Miles for Myeloma
says Carole. "I know how important myeloma education is, and I feel very
Philadelphia was once again the site of a pioneering effort to raise aware-
blessed to be able to help others who are coping with the disease that has
ness of multiple myeloma while raising funds for research when the
been a part of my life for 22 years."
Miles for Myeloma 5K Walk/Run came to town. The April 25th regional
The first meeting of the Tri-County Multiple Myeloma Support Group
event was co-presented by
took place on June 23, with 10 people in attendance. The group will
the Philadelphia Multiple
continue to meet from 6 to 8 p.m. on the fourth Tuesday of each month at
Myeloma
Networking
the DuBois Regional Medical Center West. For more information, please
Group, and the Central
contact Carole Levis via c.levis@msn.com or 814-372-2428.
New Jersey and Northern
New Michigan group off to a good start
New
Jersey
Multiple
IMF is pleased to announce a new myeloma support group in Michigan.
Myeloma Support Groups.
Members of the Flint Area Multiple Myeloma Support Group held their
Many runners, walkers, volunteers, patients,
first meeting on February 19. The inaugural meeting proved to be an
family, and friends gathered in the City
excellent way for participants to meet and interact with fellow myeloma
of Brotherly Love to join the movement
patients, their family members, and friends, as well as learn new aspects
to find a cure for myeloma. Participants
about the treatment and management of myeloma. This group has contin-
enjoyed the beautiful views of Boathouse
ued to meet the on the third Thursday of each month from 6:30 to 8 p.m.
Row, Kelly Drive, the Philadelphia Museum
at the Great Lakes Cancer Institute. For more information, or to join the
of Art, and the city skyline along the Martin
growing ranks of group members, please contact Judy or Morley Biesman
Luther King Drive walk/run route.
via judy@biesman.com or at 810-732-4738. MT
Proceeds from the event will
benefit the research initiatives of
How to Start a Myeloma Support Group
the IMF and the MMRF. The IMF
Secure a location for the meeting as soon as practical. Consider
thanks all who took part in this
parking availability and handicap accessibility. Some suggestions are
unforgettable day, with special
hospitals, community centers, libraries, and churches.
thanks to Miles for Myeloma chair-
Pick a date and time convenient to you, taking into consideration the
persons Karen Horan, Marilyn
best time for others to come to the meeting. Groups typically meet
Alexander, Sharon Klein, Paula Van Riper, Maddie Hunter, and Ann McNeil.
for two hours, and on a monthly basis.
Compose a letter that you can send to doctors, clinics, hospitals, and
22-year myeloma survivor
patients and family members informing them of the group. Ask the
heads a new group
office of your local oncologist to inform their patients about your
Carole Levis was diagnosed with myeloma
group and post your flyer in their office.
22 years ago. "When I was first diagnosed,
List your group's meeting date, time, and place in your local
my grandson was 4 years old, and my goal
newspaper's health section (free). Involve local radio and TV media
was to live long enough to see him graduate
to help create awareness of your group.
from high school. I've now seen him gradu-
How the IMF can assist you
ate from college. When I was diagnosed,
Provide direction and ongoing assistance in starting your myeloma
my granddaughter had not yet been born.
support group.
She is now 13 years old, and my goal is to
List your support group on the IMF website.
be around to see the woman she becomes."
Create a basic website for the group.
Another goal Carole set for herself as she was about to undergo her third
Design a flyer for the group.
transplant in December 2008, was to find a way to serve the local myeloma
Mail out a flyer to patients in the area to help with outreach.
community. Since there was no myeloma-specific support group in the
area, she decided to take on the task of starting one. Carole has a long
IMF staff can visit and provide you with free IMF publications and
history of service, from working at a senior center and styling wigs for
information.
chemotherapy patients to headlining a Red Cross blood drive and working
Provide you with an annual DVD of an IMF Patient & Family
with Down's Syndrome children.
Seminar.
Carole spoke with Susie Novis about starting a new support group in
Offer free IMF Patient & Family Seminar registration for support
DuBois, PA. Susie put Carole in touch with Robin Tuohy (IMF Regional
group leaders.
Director, Support Groups, Northeast). "The IMF and my local cancer cen-
Access to specific website exclusively for IMF Support Group
ter were a great help in getting this much-needed support group off the
Leaders, as well as the Support Group Leader Listserv.
ground and, only six weeks later, our group was holding its first meeting,"
Invite you to the IMF Annual Support Group Leader Retreat.
800-452-CURE (2873)
19
Member Events
IMFERS RAISE FUNDS TO BENEFIT MYELOMA COMMUNITY
By Suzanne Battaglia
The "JC" Golf Tournament
Spring Forward Benefit
The 10th annual "JC" Golf
On April 25, Joseph Bellomo and colleagues
Tournament was held at
at Joseph Bellomo Architects Inc. hosted an
Wapicada Golf Course in St.
evening to benefit the IMF and the Palo Alto
Cloud, MN, on May 16, 2009.
High School Theater Boosters. Facebook offered
Participants of the "Best Bal -
the use of their corporate café as the site of the
Scramble" got going with a shot-
fundraiser. The event featured gourmet food by
gun start shortly after noon. The
Facebook Chef Josef Desimone and his team, a
afternoon of golf was followed
wine bar, and live music. Original artwork from
Joseph Bellomo
by an evening enjoyed by both
a local artist and high fashion designer displays
with colleague
Taraneh Naddafi
players and non-golfers. A delicious dinner was served thanks to major
for a silent auction enhanced the cocktail party
sponsors Green Mill Restaurant and Short Stop Custom Catering. Prizes
atmosphere for the 80 guests in attendance. Ticket sales, donations, and
auction items donated by individuals and local businesses, including
and a silent auction kept everyone entertained before the guests hit the
Joseph Bellomo Architects, contributed to the overall success of the event,
dance floor to the sounds of the band "Canoise."
but the main focus of the evening was to raise awareness of myeloma.
This year's event marked a decade of
Joseph Bellomo and his architectural firm plan to continue their work
celebrating the memory of Janet "JC"
on behalf of the myeloma community by helping fund myeloma research
Johnson by raising funds to benefit
through annual fundraising events.
the IMF and those affected by multiple
Join Us
myeloma. All proceeds from the "JC"
We are grateful to all IMFers who contribute their time, imagination, and
Golf Tournament go to support IMF
hard work to benefit the myeloma community. Our FUNdraising program
programs. Over the past ten years, the
provides you with the tools, assistance, and expertise to make your event
organizers have raised over $150,000 to fund research and other IMF
a success. Choose an established event model or create your own no
programs that benefit the myeloma community
idea is too large or too small. Join us in working together toward our com-
Our sincere thanks go out to all the sponsors, donors, volunteers, tourna-
mon goal... a CURE. Please contact me, Suzanne Battaglia, at sbattaglia@
ment participants, and dinner guest for the continued support and gener-
myeloma.org or 800-452-CURE (2873). MT
osity that have helped make this event such a huge success year after year.
UPCOMING MEMBER EVENTS
Music Against Myeloma
Sept 1-30, 2009 Salon 926 Myeloma Awareness Month Wilmington, DE
On April 25, New York City's chic BLVD bar was the site of the fourth
Kerri Marioni, salon926@verizon.net or 302-426-9926
annual Music Against Myeloma. The evening of great company, wonderful
Sept 2009 (date TBD) Multiple Musicians Against Multiple Myeloma
Great Neck, NY Naomi Margolin, nmargolin@aol.com or 516-487-6712
food, and sensational live music was enjoyed by nearly 150 guests who
Sept 2009 (date TBD) Heuer Golf Tournament Caledonia, NY
gathered to support the work of the IMF.
Nancy Heuer, nheuer@cob.rit.edu or 585-538-4333
Thanks to performers Danielia
Sept 5, 2009 Fiacco Golf Tournament Canton, NY
Melanie Nichols, LMNichols94@yahoo.com
Cotton, Dave Murphy, Matt
Sept 25, 2009 Misbehaving for MM Chicago, IL
Ostrower, and the Turn, as well
Alexandra Zousmer, aezous@gmail.com or 858-354-9802
as Sugar Sweet Sunshine bakery,
Sept 27, 2009 Pytlik Memorial Walk North Tonawanda, NY
Murray's Cheese, and the popular
Barb Pytlik, bpcb3@hotmail.com or 716-400-3698
"Cancer Sucks" socks, the Music
October 11, 2009 Coach Rob's Benefit Apopka, FL
Rob Bradford, rbradford@crothall.com
Against Myeloma fundraiser has
November 7, 2009 Evening 4 A Cure East Amherst, NY
had yet another stellar year.
Jerra Barit, bufbarits@roadrunner.com or 716-472-1620
Music Against Myeloma was co-founded in 2005 by Slava Rubin, whose
father passed away from myeloma in 1993, and Matt Ostrower, whose
Fly a Virtual Kite & Gain a Donation
family has also been touched by cancer.
for the IMF
After four successful years in New York
Celgene has created Multiple Expressions, a website
City, the two are now thinking of taking
where patients and caregivers can create a "kite for a cause"
the event nationwide. All funds raised
and post expressions of support for friends and loved ones
go to support myeloma research in
with multiple myeloma. When you create a virtual
memory of Mark Rubin.
kite, Celgene will make a donation to the IMF.
Go to multipleexpressions.com to
add your kite and help the IMF.
20
www.myeloma.org
Patient & Caregiver Experience
MYELOMA TODAY IN CONVERSATION WITH DAVID BROWN
You have had myeloma for many years.
than cheerful to say the least. When I'd
When were you diagnosed?
come across the word "incurable" or when
In 1978, I was 40 years old and seemingly in
the data got too depressing to deal with,
good health. My only complaint was a pain in
I'd head to the ice cream shop located
my back. Eventually, that back pain brought me
across the street from the library. Then
into the office of an orthopedic surgeon, who
I'd get back to doing my homework. The
found what he thought to be a cyst in my tho-
librarians were a huge help to me in those
racic spine. The mass was surgically excised and
days. I learned a lot about the disease
biopsied. The lab result was quite unexpected:
and also identified the best doctors in the
the "cyst" turned out to be multiple myeloma.
field. I flew to Arizona to see the late Dr.
How did you react to the news?
Sydney Salmon. He told me I had "indo-
lent" myeloma my wife says "indolent"
Not surprisingly, I was very scared. I tried to
describes my personality perfectly! and
look at my situation objectively and saw two
he suggested I harvest my bone marrow.
possible paths to follow. One was to place
I did as he advised. (By the way, that bone
myself in the hands of the doctors and follow
Prudy & David Brown
marrow is still in storage.)
whatever instructions they gave me. The other
approach was to learn as much as possible about my diagnosis. I chose the
Did you continue to gather information about myeloma?
former path and did everything my doctor told me to do. The orthopedist
Yes. Around the time I went to see Dr. Salmon, my wife and I attended
referred me to an excellent hematologist although not a myeloma spe-
our first IMF Patient & Family Seminar. This was in the early years of the
cialist and I was given a prognosis of a two- to three-year survival. At the
IMF seminar program they were not yet the grand productions they are
time, this sounded like the best news I'd heard. I had two kids in school,
today but we found the meeting incredibly helpful. We have continued
in fifth and eighth grade, and I was thankful to have more years with them.
to attend the IMF seminars when they come to our area, both to further
After I completed a course of radiation, I put the diagnosis out of my mind
educate ourselves and to meet other myeloma patients and caregivers.
and tried not to lose any sleep over it. I do remember having some silly
We also occasionally attend the meetings of our local myeloma support
thoughts like, "I just bought a new pair of tennis shoes. I shouldn't have
group. In addition, I have found the online myeloma listserv sponsored
done that. My wife is going to need that money!" Otherwise, I settled into
by the IMF to be an incredible source of knowledge, and I review it daily.
life as usual. My intermittent lab tests kept coming up okay and I had no
Do you find it useful to interact with other members of the
further anti-myeloma treatment for the next 15 or 16 years. In hindsight,
myeloma community?
I now realize just how very fortunate I was.
Yes. For me, this is also a way of giving back. Throughout the years, friends
In those early years, did you keep the diagnosis private?
and acquaintances have put me in touch with newly diagnosed myeloma
I told my friends about the diagnosis and discussed it freely when asked.
patients, and I've tried to be helpful and encouraging to them. I also try
At work, I told my supervisor and a couple of colleagues, asking them to
to be helpful to fellow patients at support group meetings and at IMF
keep the information confidential. I stated that I didn't want either any
seminars.
special attention or any assignment limitations. As far as I know, they
honored my request.
What is your myeloma status now?
Have you ever wondered how or why you got myeloma?
I have been on one form of treatment or another since 1993 or 1994,
As a child, I lived in the Panama Canal Zone and was likely exposed to
with various combinations of radiation, melphalan, prednisone, dexa-
some environmental toxins but I am unaware of any specific exposure
methasone, thalidomide, Biaxin®, Cytoxan®, and Revlimid®. I am now
linked to myeloma. By profession, I am an electronics engineer special-
more knowledgeable about my disease, so I am more able to engage in a
izing in designing computer software for hospital information systems.
dialogue about my condition and treatment with my local oncologist and
with Dr. Brian Durie, my myeloma specialist.
Let's get back to talking about your history with myeloma...
In 1993 or 1994, I got a pain in my shoulder and simply assumed I had
And how is your life otherwise?
bursitis. I took some aspirin and kept playing tennis. I had lab tests per-
I certainly don't sit around worrying about myeloma, and I don't pay
formed a couple of months prior but I didn't pay much attention to my
attention to statistics. I believe that there is no one on Earth who knows
numbers in those years and don't know if there had been a trend toward
how long I am going to live with myeloma, so I take things one day at
my myeloma becoming active again. The shoulder pain turned out to be
a time. I retired from work in 1998. I try to take good care of my wife/
the result of a myeloma lesion on my cervical spine. I underwent another
caregiver, as I think this experience has been harder on her than on me.
course of radiation and a couple of rounds of dexamethasone. Three
We travel, we play bridge, we enjoy our life especially visiting our four
months later, myeloma destroyed one of my ribs.
grandchildren. I like reading, working out with a personal trainer, and
After so many years of "smooth sailing," how did you react to
playing tennis and hiking. I am very thankful for my good fortune, for
having to confront myeloma again?
the support of my wife and family and friends, and for the good medical
I figured that it was time to change my philosophy. I hit the local health
care I've received over the years. It has been 31 years since my myeloma
library and started reading up on myeloma. The information was less
diagnosis. I have been incredibly lucky. MT
800-452-CURE (2873)
21
WHAT DO YOU GET AT AN IMF PATIENT & FAMILY SEMINAR?
Education · Access to Experts · Camaraderie
Topics Covered
· What's New in Myeloma? · Ask-the-Expert
· Managing Side Effects · How to be a Better Patient
· Frontline Therapy · Transplant · Bone Disease
· Maintenance Therapy · Relapse · Novel Therapies
Upcoming 2009
Go to our website
www.myeloma.org
Patient & Family Seminars
and click on the
Washington, DC
"Seminars and Meetings"
August 7-8, 2009
tab for more details, the
Minneapolis
most up-to-date faculty, hotels
August 28-29, 2009
and registration information.
2009 Regional Community Workshops (RCW)
If you cannot get to a P&F Seminar, consider attending a Regional Community
Workshop. These half-day meetings provide Education, Access to Experts, and
Camaraderie. Upcoming RCWs will be held in Arizona, Colorado, Hawaii, Kansas,
Ohio, and Texas. Registration is free but you must register. It's a great way to learn
from myeloma experts, as well as share experiences and gain strength from others in
the IMF family. Find more details about the next RCW near you at our website.
International Myeloma Foundation
NON-PROFIT
12650 Riverside Drive, Suite 206
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
U.S.A.
PAID
www.myeloma.org
N. Hollywood, CA
(800) 452-CURE (2873)
PERMIT NO. 665
Change Service Requested
Foundation
Myeloma
International
©2009,
U.S.A.in
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Printed
2009 IMF Calendar of Events
Aug 7-8
IMF Patient & Family Seminar Washington, DC
Oct 23
IMF Patient & Family Seminar Torino, ITALY
Aug 28-29 IMF Patient & Family Seminar Minneapolis, MN
Oct 25
Patient & Family Seminar Heidelberg, GERMANY
Sept 11-12 Myeloma Canada Patient & Family Seminar Calgary, CANADA
Oct 26
IMF Physician Community Workshop Stut gart, GERMANY
Sept 11
IMF Regional Community Workshop Honolulu, HI
Oct 30
IMF Patient & Family Seminar Paris, FRANCE
Sept 16
IMF Clinical Conference St. Petersburg, RUSSIA
Nov 7
3rd Annual Comedy Celebration Los Angeles, CA
Oct 1
IMF Regional Community Workshop Shreveport/Bossier City, LA
Nov 14
IMF Regional Community Workshop Florence, ITALY
Oct 3
IMF Regional Community Workshop Longview, TX
Nov 14
Southwest Symposium Tempe, AZ
Oct 12
IMF Physician Community Workshop Valencia, SPAIN
Nov 16
IMF Regional Community Workshop Bologna, ITALY
Oct 13
IMF Regional Community Workshop Murcia, SPAIN
Nov 17
IMF Physician Community Workshop Pavia, ITALY
Oct 14
IMF Regional Community Workshop Madrid SPAIN
Nov 19
IMF Regional Community Workshop Stut gart, GERMANY
Oct 15
IMF Regional Community Workshop Pamplona, SPAIN
Nov 21
Patient & Family Seminar Karlova Studanka, CZECH REPUBLIC
Oct 16
IMF Physician Community Workshop Barcelona, SPAIN
Nov 21
IMF Regional Community Workshop Overland Park, KS
Oct 17
IMF Patient & Family Seminar Sevil e, SPAIN
Nov 22
IMF Japan Patient & Family Seminar Ni gata, JAPAN
Oct 17
IMF Regional Community Workshop Cincinnati, OH
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.
Thank you for your continued support of the IMF. Because of your contributions,
we have been able to maintain the full range and quality of the programs we offer.