Myeloma
Today WINTER2008
Volume 7 Number 5
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
New findings presented at the 49th annual meeting and
Susie Novis reports on the IMF annual Gala. This year's
exposition of the American Society of Hematology (ASH)
event, Celebrating Peter Boyle An Evening of Comedy
showed that, even without a cure, there are dramatic
with Family & Friends, was a fitting memorial that raised
improvements in treatment and survival for patients with
funds in support of myeloma research while raising myelo-
multiple myeloma. Presentations highlighted long-term
ma awareness. Ray Romano, Peter's friend and cast mate
survival potential for growing numbers of patients, as wel
from Everybody Loves Raymond, headlined and hosted
as new medical options becoming available for newly diag-
the show that also included Patricia Heaton, Doris Roberts,
nosed patients, and powerful new drugs that may delay or replace the need for
Fred Wil ard, Jeff Garlin, Richard Lewis, and Martin Short. PAGE 12
bone marrow transplants. In addition, key therapies developed for myeloma
are showing promise in other blood cancers. PAGE 5
Supportive Care
The recipients of the 2008
IMF Research Grant awards
IMF Hotline Coordinators, who answer questions
are
to help you address the various aspects of myeloma
announced. Projects being funded
in a more informed way, respond to inquiries about
include two promising investigations
smoldering myeloma diagnosis and monitoring, and
by senior researcher Dr. William
Matsui and junior researcher Dr.
its potential progress to active disease. PAGE 16
Silvia Ling, both receiving support for the second consecutive year. Three
Kathy Lilleby, RN, talks to Myeloma Today about myelo
additional junior research awards are funding studies by Drs. Sonia Val et,
suppression, a common and expected side effect associated
Karin Vanderkerken, and Jing Yang. And IMF Japan has bestowed its 2008 Aki
with novel anti-myeloma therapies. These side effects ane-
Award on researcher Dr. Yutaka Okuno. PAGE 7
mia, neutropenia, and thrombocytopenia are manageable
Dr. Sundar Jagannath, member of the IMF Scientific Advisory
with appropriate medical interventions, and patient and care-
Board, discusses Serum Free Light Chain Testing for Diagnosis
giver education. If not managed effectively, these side effects
and Monitoring (FreeliteTM), a new technology capable
have the potential to be life-threatening and may interfere
of detecting and measuring free light chain in the blood.
with optimal therapy, and can negatively impact quality of life. PAGE 17
Freelite is an important advancement in improving the lives
of many people living with myeloma and other B-cel dyscra-
Also in this issue...
sias, as it has enabled physicians to monitor patients with a
n Dear Reader by IMF president Susie Novis PAGE 3
monoclonal protein that cannot be measured by conventional electrophoretic
methods. PAGE 9
n Letters to the IMF PAGE 3
Dr. Brian Van Ness, member of the IMF Scientific Advisory
n News & Notes PAGE 4
Board, updates readers on the IMF's Bank On A Cure®
Research Initiative, which recently sought and received
n Nurse Leadership Board activities update PAGE 15
affiliate membership in the Pharmacogenomics Research
n Spotlight on Advocacy: 2007 myeloma advocacy summary PAGE 18
Network (PGRN), a nationwide col aboration of scientists
working on advancing knowledge of the genetic basis for
n International Affiliates: IMF holds
variable drug responses. As part of the IMF's commitment to
educational meetings throughout
Looking for a
develop conglomerate data analysis of genetic variations, the Bank On A Cure
Europe PAGE 19
LocaL myeLoma
panel has so far been run on approximately 1,000 myeloma patient samples
n Member Events: IMFers raise funds
support group?
and 200 controls. PAGE 10
to benefit the myeloma community
If you are interested in
Treatment with vorinostat (ZOLINZA®) has demonstrated clinical activity in
PAGE 20
joining an existing group
two investigational Phase I studies of vorinostat in combination with bortezo-
n Support Groups: new group in
please access the website
mib (VELCADE®) in patients with advanced multiple myeloma. Vorinostat is
East Tennessee gets off to a great
at www.myeloma.org
believed to decrease the activity of histone deacetylase (HDAC), al owing for
start PAGE 21
"Finding Support"
the activation of genes that may help to slow or stop the growth of cancer cel s.
or call the IMF at
Results demonstrate promising anti-tumor activity in patients with relapsed or
n Calendar of events BACK COVER
800-452-CURE (2873).
refractory myeloma. PAGE 11
This issue of Myeloma Today is supported by Celgene Corporation, Mil ennium Pharmaceuticals, Ortho Biotech, and The Binding Site.
International Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Benson Klein
Dr. Edith Mitchell
Susie Novis
E. Michael D. Scott
Michael B. Bell
Dr. Robert A. Kyle
Dr. Gregory R. Mundy
Matthew Robinson
R. Michael Shaw
Mark DiCicilia
Isabelle Lousada
Charles Newman
Richard H. Saletan
Igor Sill
Michael S. Katz
Allan Weinstein
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Daniel Bergsagel, CANADA
Ian Franklin, SCOTLAND
Ian MacLennan, ENGLAND
Y.C. Chen, REPUBLIC OF CHINA
Tadamitsu Kishimoto, JAPAN
James S. Malpas, ENGLAND
Scientific Advisors
Raymond Alexanian, USA
Rafael Fonseca, USA
Linda Pilarski, CANADA
Kenneth C. Anderson, USA
Gösta Gahrton, SWEDEN
Raymond Powles, ENGLAND
Michel Attal, FRANCE
Morie A. Gertz, USA
S. Vincent Rajkumar, USA
Hervé Avet-Loiseau, FRANCE
John Gibson, AUSTRALIA
Donna Reece, CANADA
Dalsu Baris, USA
Hartmut Goldschmidt, GERMANY
Paul Richardson, USA
Bart Barlogie, USA
Roman Hajek, CzECH REPUBLIC
Angelina Rodríguez Morales, VENEzUELA
Régis Bataille, FRANCE
Jean-Luc Harousseau, FRANCE
David Roodman, USA
Meral Beksac, TURKEY
Joyce Ho, AUSTRALIA
Jesús San Miguel, SPAIN
William Bensinger, USA
Vania Hungria, BRAzIL
Orhan Sezer, GERMANY
James R. Berenson, USA
Mohamad Hussein, USA
Kazuyuki Shimizu, JAPAN
Leif Bergsagel, USA
Sundar Jagannath, USA
Chaim Shustik, CANADA
Joan Bladé, SPAIN
Douglas Joshua, AUSTRALIA
David Siegel, USA
Mario Boccadoro, ITALY
Michio M. Kawano, JAPAN
Seema Singhal, USA
J. Anthony Child, ENGLAND
Henk M. Lokhorst, THE NETHERLANDS
Bhawna Sirohi, ENGLAND
Raymond L. Comenzo, USA
Heinz Ludwig, AUSTRIA
Alan Solomon, USA
John Crowley, USA
Jayesh Mehta, USA
Pieter Sonneveld, THE NETHERLANDS
Franco Dammacco, ITALY
Hĺkan Mellstedt, SWEDEN
Andrew Spencer, AUSTRALIA
Faith Davies, ENGLAND
Giampaolo Merlini, ITALY
A. Keith Stewart, USA
Meletios A. Dimopoulos, GREECE
Gareth Morgan, ENGLAND
Guido J. Tricot, USA
Johannes Drach, AUSTRIA
Gregory R. Mundy, USA
Benjamin Van Camp, BELGIUM
Brian G.M. Durie, USA
Amara Nouel, VENEzUELA
Brian Van Ness, USA
Hermann Einsele, GERMANY
Martin M. Oken, USA
David Vesole, USA
Dorotea Fantl, ARGENTINA
Antonio Palumbo, ITALY
Jan Westin, SWEDEN
Headquarters
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607-3421 U.S.A.
Tel: 818-487-7455 or 800-452-CURE (2873)
Fax: 818-487-7454
E-mail: TheIMF@myeloma.org
Website: www.myeloma.org
IMF Staff
Executive Director
Senior Vice President, Strategic Planning
Vice President, Development
David Smith (dsmith@myeloma.org)
Diane Moran (dmoran@myeloma.org)
Heather Cooper Ortner (hortner@myeloma.org)
Special Outreach Coordinator
Hotline Coordinator
Development Associate
Arin Assero (aassero@myeloma.org)
Paul Hewitt (phewitt@myeloma.org)
Randi Liberman (rliberman@myeloma.org)
Development Associate
Meeting & Event Services
Data Specialist
Suzanne Battaglia (sbattaglia@myeloma.org)
Spencer Howard (showard@myeloma.org)
Colleen McGonigle (cmcgonigle@myeloma.org)
Hotline Coordinator
Publications Editor
Publication Design
Nancy Baxter (nbaxter@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Hotline Coordinator
Development Assistant
Director, Medical Meetings & CME Programs
Debbie Birns (dbirns@myeloma.org)
Missy Klepetar (mklepetar@myeloma.org)
Lisa Paik (lpaik@myeloma.org)
Director, IMF Europe
Regional Director, Support Groups Southeast
Webmaster
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Andrew Lebkuecher (imfsupport@charter.net)
Abbie Rich (arich@myeloma.org)
Administrative Assistant
Specialty Member Services Coordinator
Comptroller
Rachael Coffey (rcoffey@myeloma.org)
Kemo Lee (klee@myeloma.org)
Jennifer Scarne (jscarne@myeloma.org)
Director, Support Groups Outreach
Database & Inventory Control
Regional Director, Support Groups Northeast
Kelly Cox (kcox@myeloma.org)
Macky Lee (mlee@myeloma.org)
Robin Tuohy (tuohy@snet.net)
www.myeloma.org
P
Internationallaceholder
Myeloma Foundation
Dear Reader,
The IMF has just produced its first Annual Report. The hard work and
Each year the IMF will publish its Annual
extraordinary talent of our Board of Directors and the IMF's dedicated
Report to keep our members up-to-date on
staff made the year a resounding success. We are pleased to present the
our activities, the progress we're making,
Report with our heartfelt thanks and our appreciation to you the com-
and how we utilize the funds we receive from
munity that has come together to make our achievements possible.
people like you. Your support enables us to
The year reviewed in this report was a watershed year in the fight against
move research forward both in the lab and in
myeloma. In 2006, thalidomide was finally approved in the U.S., as well as
the clinic, and to improve the quality of life
in several other countries, as a myeloma treatment. Also in 2006, lenalido-
of myeloma patients while working toward
mide (Revlimid®) was approved for the treatment of myeloma, and new
prevention and a cure.
data demonstrated that the combination of lenalidomide with low-dose
As always your comments and suggestions
dexamethasone could offer a new standard of care for first-line treatment
are welcome.
of thousands of patients. VELCADE®, approved as a single agent in 2003,
Warmest regards,
had become a standard of care and was shown to be a backbone of therapy
as it was combined with more and more compounds.
Susie Novis
IMF President
New staff joined the IMF in 2006 to take on important new roles, and
long-term staff enhanced their roles to take on new opportunities to better
Editor's Note: Please visit www.annualreport.myeloma.org to view the
meet the needs of patients and their families.
annual report online or call 800-452-CURE (2873) to request a copy.
Letters to the IMF
The IMF
cast, was a perfect choice for us at the time. The program left nothing to
As you go through your day, please know how grateful we are to be able
be desired. As we search for a meaningful description of this experience,
to call you friends. You have stood with us and supported us as we fight
this comes to mind it was like being with a very high-end support group
multiple myeloma. We are humbled to recall the time and resources that
for a fulfilling one and a half days, with an excellent program, well-chosen
you have shared with us over the years, and are still offering. On October
to address the interests and needs of the participants. The participants
25, 2007, we marked Day T+5000 (the 5000th day after Rhoda's bone
themselves contributed significantly. The words `meaningful, helpful,
marrow transplant). National Cancer Institute statistics indicate that less
quality, first class, organized, and educational' all come to mind. We know
than 20% of transplant recipients reach day T+2000. There are no statis-
how much hard work goes into planning and producing an event of this
tics for T+5000. Our battle continues, and we are weary, but Rhoda has
magnitude. I hope that you will see this note as at least a small recognition
far exceeded medical expectations and we celebrate the miracle that you
of your effort. We're happy to be associated with all of you!
have helped to create. Thank you!!!
Bob & Lynda Scott
Rhoda & Gill Lott
Third Annual Southwest Symposium
The Hotline
I am the president of the Amyloidosis Support Groups (www.amyloidosis-
Thank you so much for your very helpful answer to my question. Everyone
support.com) and I attended the IMF symposium in Arizona on November
I have communicated with has been so kind, helpful, and informative. The
10. There were so many terrific people in attendance, and so much hope.
article you cited looks like exactly what I'm looking for. I am thrilled that
If there were a theme for the symposium, it was HOPE. The people of
the IMF is such a great resource for myeloma patients, as I have had some
difficulty finding such information on my own. I appreciate so much all
the IMF are amazing I was impressed both by the Foundations' staff
the information the IMF has given me. I was diagnosed last year at 38,
and by the expertise of the faculty. I had a wonderful time, and learned
and I am finding many doctors are unsure of how to treat myeloma in
so much!
someone my age. It can be very frustrating, as even my transplant doctor
Muriel Finkel
seems unsure at times about my course of treatment. I am finding the IMF
Myeloma Mobile
to be a great resource in my quest for information on myeloma. It will
be very helpful in discussing my options with my transplant doctor and
Thank you for publishing the story about our family's cross-country
oncologist. You are awesome!
Myeloma Mobile education and awareness tour in the in the Fall issue of
Myeloma Today! It was a great experience for the whole Tuohy Family, and
Kris Grandinetti
we all hope that the patients and caregivers we visited during our "mobile"
project found the experience as rewarding as we did. I also wanted to let
Patient & Family Seminar in St. Petersburg, FL
Myeloma Today readers know that Woman's World is publishing an article
Congratulations! Our first IMF seminar far exceeded our expectations in
in their January issue, focusing on a wife's perspective of the disease and
every way. We can't remember ever being more satisfied and impressed
how our family is coping with Michael's myeloma diagnosis.
with any educational seminar that we have attended or participated in, be it
business or otherwise. The Durie, Hussein, and Katz team, with supporting
Robin Tuohy
800-45-CURE(87)
News & Notes
New Data Confirms Survival Benefits
New IMID Clinical Trial Opens
Published data provides encouraging news for nearly half the patients
A Phase II trial for CC4047, a new IMID under development, has opened.
newly diagnosed with myeloma, patients who are 65 and older. The results
IMIDs are a class of drugs that have been important for myeloma,
of a multi-center clinical trial show adding thalidomide to the standard
with thalidomide and lenalidomide (Revlimid®) being prime examples.
treatment, melphalan and prednisone (MP), increased average survival to
CC4047 is being studied in myeloma patients with relapsed disease who
more than 4 years, a year and a half more than the same treatment without
have received three or fewer previous treatment regimens. This trial is
thalidomide. The study comes from the France's Intergroupe Francophone
only available at the three Mayo Clinic facilities in Minnesota, Florida and
Myélome (IFM), and is published in the medical journal Lancet. The IFM
Arizona. For more information call the IMF Hotline at 800-452-2873.
study involved patients between 65 and 75 years old who are not eligible
ECOG Randomized Study E1A05
for bone marrow transplants. The data verify preliminary findings that first
raised excitement at
The Eastern Cooperative Oncology Group (ECOG) is accruing myeloma
the international ASCO
patients for a randomized study of bortezomib in combination with dexa-
conference in 2006.
methasone, with and without lenalidomide. Patients must have completed
They also dovetail with
a dexamethasone-based therapy as their first treatment for myeloma.
study results in the US
Patients planning to proceed to a stem cell transplant at this time are not
where thalidomide is
eligible. All patients will participate in a Quality of Life Survey both during
used with the steroid
and after treatment, and will be followed for up to seven years to assess
dexamethasone, dem-
the long-term effects of the study.
onstrating increased
Cognitive Function and Transplantation
survival and a longer
Some cancer patients who undergo stem cell transplantation exhibit nega-
time before the myeloma progresses. "This is an important milestone for
tive changes in cognitive functioning. Researchers at the H. Lee Moffitt
all patients because the data are included in Pharmion's application to
Cancer Center and Research Institute in Tampa, FL, first studied 286
make Thalidomide Pharmion available for myeloma in Europe," said Susie
patients who were randomized to be tested pre-transplant, and then at 6
Novis, president and co-founder of the International Myeloma Foundation
and 12 months after. Another group of 124 patients was tested at 6 and
(IMF). "The IMF would like all patients to have the same ready and safe
12 months. Eighty-three patients who were tested at 12 months only were
access to thalidomide as they do in the United States."
not included in the analysis. The majority (63%) of the patients participat-
Efficacy Advantages of VMP Combination
ing in the study had multiple myeloma. Investigators found that, with the
Therapy Reported
exception of attention, there was a significant improvement in cognitive
Interim findings from global clinical trial found that adding bortezomib
abilities within a year of the transplant. Further research is needed to iden-
(VELCADE®) to melphalan and prednisone (MP) improved all param-
tify patients who may suffer from deficits for a longer period of time.
eters in newly diagnosed patients including overall survival, complete
IMF Scientific Advisor Sets
remission rate and time-to-disease progression, compared to melphalan
Grant Longevity Records
and prednisone alone. The trial involved 682 newly diagnosed myeloma
Dr. Alan Solomon, IMF Scientific Advisor and
patients who were ineligible for stem cell transplantation, at 151 clinical
University of Tennessee (UT) Graduate School
trial sites in 22 countries. The data from the trial were reported at the 2007
of Medicine researcher, professor of medi-
annual meeting of the American Society of Hematology (ASH). Based on
cine, and director of the Human Immunology
the recommendation of an independent data monitoring committee, the
and Cancer/Alzheimer's Disease and Amyloid-
international Phase III VISTA trial (VMP vs. MP) was stopped early, allow-
Related Disorders Research Program, was
ing all patients in the trial to have bortezomib added to their therapy at
recently awarded a five-year renewal on a
the discretion of their physician. The VMP combination therapy is already
grant from the National Institutes of Health's
approved for use in patients who have received a previous treatment.
(NIH) National Cancer Institute (NCI). This is now one of the longest
"Myeloma patients who have failed on previous treatments know the
active grants in NIH history and is the longest running NIH grant in UT
potential of the novel therapies including VELCADE," said Dr. Brian G.M.
history. The grant, originally awarded to Dr. Solomon in 1965, has been
Durie, chairman and co-founder of the IMF. "These new findings bring
renewed continually for the past 42 years and has provided more than
VELCADE closer to newly diagnosed patients, and are especially important
$12 million to fund Dr. Solomon's research. Dr. Solomon has devoted
to patients who are not eligible for stem cell transplants."
these 42 years to the study, diagnosis, and treatment of cancer. For the
New Resource for Exploring Clinical
past 10 years, his work has focused in part on myeloma-related primary
Trial Options
or AL amyloidosis. "I am very appreciative and grateful for the initial
CancerTrialsHelp.org, the website of the
and the continuing NIH grant, which will make it possible for us to
Coalition of Cancer Cooperative Groups,
achieve our ultimate goal, to improve the outcome of patients with these
offers customized access to information on thousands of cancer clinical
medically devastating amyloid-associated diseases," said Dr. Solomon.
trials that are currently open and seeking patients. TrialCheck®, a search-
"I am thankful to receive this award particularly because so few NIH
able database, offers trial-searching based on diagnosis and zip code to
research grants are being funded at this time due to imposed limitations
help users locate trials near their home.
in governmental support for medical research."
mt
4
www.myeloma.org
Scientific & Clinical
new findings reported at asH
The 49th annual meet- IMF Identifies Potential Link Between
ing
and
exposition
Genetic Pathways and Environmental Risks
of the American Society of
for Myeloma
Hematology (ASH), a global
As reported at the 49th annual meeting of ASH, findings from the IMF's
cancer conference, took place
Bank On A Cure® DNA data base identified genetic links to bone disease
in Atlanta, GA, December
in multiple myeloma, as well as indications for treatment. These findings
811, 2007. Findings present-
also may both support and explain associations that have been observed
ed showed that, even with-
between environmental toxins such as dioxins and benzene, and an
out a cure, there are dramatic
increased risk for myeloma. The findings were made with resources from
improvements in treatment
Bank On A Cure®, the world's first repository of DNA samples created to
and survival for patients with
advance the understanding of myeloma, and were presented at ASH on
multiple myeloma.
December 11th.
Presentations highlighted long-
The study found that genetic pathways associated with the ability to neu-
term survival potential for
tralize environmental toxins are defective in patients with classic myeloma
growing numbers of patients,
(myeloma with bone involvement). These pathways are identified as
as well as new medical options
specific segments of genes called single nucleotide polymorphisms (SNPs)
becoming available for newly
that are known to be associated with toxin metabolism and DNA repair.
diagnosed patients, and pow-
erful new drugs that may delay or replace the need for bone marrow
Continues on Page 6
transplants. In addition, key therapies developed for myeloma are show-
ing promise in other blood cancers.
"We are seeing longer responses
with fewer side effects for a grow-
ing range of patients," said Susie
Novis, president and co-founder
of the IMF. "The findings at this
global conference are moving
myeloma closer to becoming a
chronic disease that can be man-
aged long-term while we continue
to search for a cure."
Best of ASH
Among the highlights of the con-
Dr. Mario Boccadoro
ference are improved response
Dr. Brian Durie's abstract presentation on
and Susie Novis
and survival in the important cat-
results from Bank On A Cure® research singled
egory of patients who are newly diagnosed, combination therapies for
out as part of 2007's "Best of ASH" session
newly diagnosed patients in preparation for bone marrow transplant,
"Genetic Polymorphisms Identify the Likelihood of Bone Disease
novel agents enhancing the ability of other drugs such to attack cancer
in Myeloma: Correlations with Myeloma Cell DKK1 Expression
cells, improving survival in elderly myeloma patients, and progress with
and High Risk Gene Signatures", an abstract presented by Dr. Brian
G.M. Durie at the 2007 annual meeting of the American Society of
the IMF's Bank On A Cure® research initiative.
Hematology (ASH) has been singled out as part of this year's "Best of
In addition to helping myeloma patients, the groundbreaking research
ASH" session. ASH will reprise the "Best of ASH" session for its two ASH
presented at ASH is paying off with positive results in other blood cancers.
Highlights
Dr. Brian
meetings,
Durie
which
and
are
the Scientific
organized by itsPanel
scientific and educa-
Bortezomib (VELCADE®) has been approved for mantle cell lymphoma
tion co-chairs. Dr. Durie's study shows very strong statistical linkage
and other forms of non-Hodgkin's lymphoma (NHL), and data about
to key single nucleotide polymorphisms (SNPs) associated with bone
biology and toxin metabolism. The focus of further studies is likely to
lenalidomide (REVLIMID®) was presented in both chronic lymphocytic
include additional data sets, exploring key SNPs in more detail regard-
leukemia (CLL) and in NHL.
ing function, and the initiation of studies into targeted biology, predis-
"Ultimately which therapies are used when, will depend on how long
position, and/or epidemiology. To explore new hypotheses, Dr. Durie
the benefits last, potential side-effects, patient history and other factors,"
and colleagues will study all SNPs linked to critical bone and/or toxin
said Dr. Brian G.M. Durie, chairman and co-founder of the IMF. "But we
targets, transition from target SNP to genome-wide screening, and work
towards personalized molecular classification for treatment and preven-
are pleased to have choices and potential, where just a few years ago the
tion. The Spring 2008 issue of Myeloma Today will feature an interview
outlook was guarded and our options were limited."
with Dr. Durie about this important research project.
800-45-CURE(87)
5
Scientific & Clinical
ASH REPORT -- continued from page 5
These findings are in line with observations of patient populations and
Rajkumar, lead investigator of the study at the Mayo Clinic added, "This
groups of workers including firefighters that had previously demonstrated
is a major advance in the treatment of cancer, and also gives researchers
a correlation between increased risk for myeloma and exposure to hydro-
a new direction to
carbons and related chemicals.
explore that more
is not necessarily bet-
"Identifying these genetic pathways was unexpected," said Dr. Brian G.M.
ter when it comes to
Durie, lead author of the Bank On A Cure presentation. "We were looking
fighting the cancer."
at bone biology and the SNPs associated with toxin metabolism fell into
place. Now, working back through the gene pathways, we have a robust
The data showed
model of myeloma bone disease that may explain the epidemiological
lenalidomide,
an
observations."
oral medication from
Celgene, plus low-
Additionally Bank On A Cure identified multiple SNPs associated with
dose dexamethasone
bone biology, the original focus of this research. The findings have
IMF US Support Group Leaders at ASH
improves one year
identified SNPs that may be predictors for bone disease in patients with
survival compared to the standard high-dose dexamethasone, 96% to
myeloma.
88%. Over two years the benefit continues with an 87% survival rate for
"These findings move us closer to per-
low-dose dexamethasone compared to a 75% survival rate for high-dose
sonalized medicine," said Michael Katz,
dexamethasone. While lowering the dose of the steroid also lowers some
IMF Director and Bank On A Cure project
immediate measures of response that is offset by better, long-term disease
manager. "If we can use genetic tests to
control.
identify those myeloma patients at risk for
"Lowering the doses of the steroid dexamethasone with REVLIMID gives us
bone involvement, we can begin treatment
a new paradigm of treatment," said Dr. Brian G.M. Durie. "When we com-
earlier with medications to help prevent
bine REVLIMID with lower dose dexamethasone, we are seeing reduced
or slow bone destruction caused by the
side effects so patients stay on the drug longer, and, above all, significant
myeloma."
survival benefits. These are the outcomes
The research also turned up some prelimi-
that patients and physicians find most
Michael Katz
nary but intriguing findings that show one
important, and take precedence over the
of the cell signaling pathways associated with myeloma is also the natural
traditional ways we have used to evaluate
target of thalidomide, a widely used treatment for myeloma. In a develop-
new therapies."
ing fetus thalidomide acting on this target leads to deformed limbs, but in
Last April, the independent committee
myeloma where the target is defective, the thalidomide appears to block
monitoring the trial found the prelimi-
the development of the cancer.
nary results so compelling that the trial
The next steps are to further identify the functions of SNPs involve in all
was stopped and all patients in the trial
of these findings, study them in-depth and verify the findings with larger
were moved to lower dose dexameth-
studies of patients.
asone. Because of the overwhelming
positive response to lenalidomide plus
Survival and Longer Term Disease Control
low-dose dexamethasone in the ECOG
Take Precedence over Short Term Response
Dr. Brian Durie
study, a trial from the other large cancer
to Treatment
cooperative, SWOG, was also stopped prematurely. This trial compared
New data reported ASH require a new approach to evaluating cancer
lenalidomide plus high-dose dexamethasone to dexamethasone alone.
treatments. Findings from a multi-center clinical trial sponsored by the
Because this SWOG trial stopped early, and because nearly half of the
National Cancer Institute (NCI) and led by the Eastern Cooperative
patients on the dexamethasone-alone-arm of the study crossed over to the
Oncology Group (ECOG) demonstrated that lowering the dose of the
lenalidomide-plus-dexamethasone-arm of the study within the first year,
steroid dexamethasone when paired with lenalidomide to treat newly
overall impressions regarding survival could be misleading.
diagnosed myeloma, not only reduces side effects, but also improves
According to Dr. Durie: "We do not want patients confused by statistics. In
long-term survival.
fact, the SWOG trial concluded that REVLIMID with low-dose dexametha-
According to the Mayo
sone is among the most active up-front combination regimens against
Clinic Cancer Center,
myeloma. These results demonstrate that REVLIMID plus dexamethasone
lead institution for the
is definitely better than dexamethasone alone, and is an excellent treat-
study, the data show a
ment in newly diagnosed multiple myeloma."
"distinct survival ben-
The IMF concludes that overall findings presented at this conference about
efit" with lower doses
multiple myeloma in all ages, and across all categories of patients (newly
of the dexamethasone
diagnosed, relapsed, patients proceeding to bone marrow transplants and
combined with lenalid-
so on) is positive and encouraging and represents major advances in the
omide. Dr. S. Vincent
treatment of blood cancers beginning with myeloma.
mt
www.myeloma.org
Scientific & Clinical
2008 imf researcH grant recipients announced
The recipients of the 2008 IMF Research Grant awards were announced at the gathering of the Foundation's
Scientific Advisors, held at the 49th annual meeting of the American Society of Hematology.
Since1995,theIMF'sresearchprogramhasbeenfundingtheworld's 2008 Brian D. Novis Junior Research Grants
most promising clinical investigators in order to further research
"Role of XBP-1 in Drug Resistance of Multiple Myeloma"
into better treatments, management, prevention and, ultimately, a cure
for
multiple
Silvia Ling, MD, MBBS,
myeloma. The
FRCPA, FRACP
2008 IMF grant
Centenary Institute
awardpresenta-
of Cancer Medicine
tions took place
and Cell Biology
during the 49th
Newton, NSW, Australia
annual meeting
Proteasome inhibitors are an effec-
and exposition
tive new approach to treating
of the American Society of Hematology (ASH). Susie Novis (president and
multiple myeloma. Some 50-60%
co-founder of the IMF), Dr. Brian G.M. Durie (chairman and co-founder of
the IMF), and Dr. Robert A. Kyle (chairman of the IMF Scientific Advisory
of myeloma patients respond to
Board) were on hand to present the awards.
bortezomib (VELCADE®), the first drug of this class to be approved for
clinical use. It is striking that its relevant mechanism of action in myeloma
The IMF grants are funded by donations from private individuals. Junior
cells remains unknown. Proteasome inhibitors have numerous biological
investigators receive funding in the amount of $40,000. Senior inves-
effects but none of them had been shown to predict response. The causes
tigators are funded at $80,000. While IMF research grants traditionally
of bortezomib resistance were also unknown. The first part of the study
support one-year projects, two of this year's recipients are receiving con-
conducted by Dr. Ling showed that levels of XBP-1, a regulator of the
tinued funding based on the results of the investigators' work in 2007.
unfolded protein response, predict response to bortezomib in vitro and in
Over the years, the IMF research grant program has produced significant
a small cohort of patients. Dr. Ling and colleagues have also made myelo-
results that have both increased the overall understanding of the disease
ma cell lines resistant to bortezomib and showed that they downregulated
and have benefited myeloma patients by improving treatment options. We
XBP-1 and other genes of the unfolded protein response. Dr. Ling's goals
are certain that the work of the recipients of the 2008 IMF research grants
are now to test the utility of XBP-1 as a marker of response to bortezomib
will contribute significantly to the field of myeloma.
in a larger number of patients, and to characterize the bortezomib-resis-
2008 Brian D. Novis Senior Research Grant
tant cell lines, in terms of molecular mechanisms and cross-resistance to
other drugs. These studies should help clinicians to optimize treatment
"Hedgehog Signaling in Myeloma Cancer Stem Cells"*
strategies for myeloma, and aid the development of improved drugs.
William Matsui, MD
Assistant Professor of Oncology
"A novel CCR1 Inhibitor for the Treatment of OBD
Division of Hematologic Malignancies
in Multiple Myeloma"**
The Sidney Kimmel Comprehensive
Cancer Center at Johns Hopkins
Sonia Vallet, MD
Baltimore, MD
Massachusetts General Hospital
Boston, MA
Cancer stem cells are thought to be respon-
Osteolytic bone disease (OBD) is a fre-
sible for the growth and progression of many
quent complication of multiple myelo-
human tumors including multiple myeloma.
ma. It is characterized by reduced
Dr. Matsui's laboratory has focused on study-
bone formation and increased bone
ing myeloma stem cells and recently found
resorption, resulting in increased risk
that the Hedgehog signaling pathway, normally active during embryonic
of fractures. Myeloma cells secrete
development, regulates the growth and maturation of these cells. With the
several cytokines that promote bone
support of the 2007 IMF Brian D. Novis Senior Research Grant, Dr. Matsui
resorption by interacting with specific receptors. MLN3897 (Millennium
and his laboratory have found that Hedgehog signaling is abnormally acti-
Pharmaceuticals, Cambridge) is a novel, orally available inhibitor of the
vated within cancer stem cells isolated from some, but not all, patients with
cytokine receptor CCR1. It has a safe toxicity profile, and its anti-inflam-
myeloma. In addition, it appears that myeloma stem cells can be inhib-
matory properties are under study in rheumatoid arthritis and multiple
ited when Hedgehog signaling is blocked. With the support of the 2008
sclerosis patients. Studies conducted by Dr. Vallet and her colleagues have
IMF Brian D. Novis Senior Research Grant, Dr. Matsui and his colleagues
shown that MLN3897 blocks the formation and activity of osteoclasts cells,
will continue these studies and determine whether Hedgehog signaling
resulting in decreased bone resorption. Importantly, they have also shown
becomes "turned on" during myeloma relapse and progression, as well
that MLN3897 reduces myeloma cell growth by inhibiting the growth and
as study whether novel agents that block Hedgehog signaling are effective
against myeloma cancer stem cells.
Continues on Page 8
800-45-CURE(87)
7
Scientific & Clinical
GRANT RECIPIENTS -- continued from page 7
survival advantage conferred on them by the bone marrow microenviron-
cells without damaging normal cells. Cell death occurred rapidly, without
ment. Therefore, MLN3897 may be an effective treatment for osteolytic
the need for exogenous immunological effectors. Furthermore, the mAbs
bone disease in myeloma patients. Dr. Vallet will study these potential
were also active and therapeutic in vivo in xenograft mouse models of
anti-osteolytic and anti-myeloma effects of MLN3897 in an in vivo model.
myeloma. In the proposed project, Dr. Yang and colleagues will develop
Data generated from these studies will provide the framework for clinical
strategies to enhance the antimyeloma efficacy of mAbs. These strategies
trials in myeloma patients with bone disease.
will include sensitizing myeloma cells to mAb-mediated apoptosis with
interferon-, combining chemotherapy drugs with mAbs to synergize
"Targeting Multiple Myeloma with Nanobodies:
antimyeloma effects, and using immunological effectors to enhance mAb-
study in the 5TMM model"
induced myeloma cell apoptosis. Collectively, these studies will lead to
Karin Vanderkerken, PhD
a better understanding of the role of anti-2M mAbs in myeloma, and
Vrije Universiteit Brussel
will enable the development of a more potent therapeutic antibody to be
Brussels, Belgium
translated into clinical application.
Dr. Vanderkerken's project investi-
2008 IMF Japan Aki Award***
gates using nanobodies in targeting
"Establishment of Models for Multiple Myeloma"
multiple myeloma. Nanobodies are
single-domain antigen binding enti-
Yutaka Okuno, MD, PhD
ties, roughly four times smaller than a
Department of Hematology
classical antibody fragment, and very
Kumamoto University
stable. Nanobodies will be generated
Kumamoto, Japan
after immunizing camels with a myelo-
The transcription factor PU.1 is essential
ma-specific antigen, followed by the production of these nanobodies in
for myeloid and B-cell development. In
vitro using different molecular biological techniques. The biodistribu-
his recent research study, Dr. Okuno
tion of the nanobodies will be assessed by labeling the nanobodies with
and colleagues found that PU.1 is down-
99mTc, injecting them in myeloma bearing mice, and monitoring in vivo
regulated in the majority of human
by a combination of gamma tomography and CT imaging. When proven
multiple myeloma cell lines and a sub-
to target the myeloma cells with a high specificity, these nanobodies will
set of myeloma patients, in contrast to
be coupled to various molecules and/or compounds to treat the myeloma
relatively high expression of PU.1 in
cells locally, thereby minimizing unwanted toxic side effects.
normal plasma cells. Conditional expression of PU.1 in myeloma cell
lines induced complete growth arrest and apoptosis. Patients in this low
"Targeting 2-Microglobulin for Induction
PU.1 expression subset may have a poor prognosis. It is possible that
of Tumor Cell Apoptosis in Myeloma"
down-regulation of PU.1 might induce unregulated plasma cell growth
Jing Yang, PhD
that leads to myeloma. Therefore, Dr. Okuno and colleagues are generat-
MD Anderson Cancer Center
ing conditional knockout mouse models that lack PU.1 expression only
Department of Lymphoma
in plasma cells. Those mice would help understanding the role of PU.1
and Myeloma
down-regulation in myeloma cells. This may represent a new therapeutic
Houston, TX
strategy for treatment of myeloma patients.
Multiple myeloma disease relapses despite
the most aggressive treatment available
* This project has received second-year funding.
today. Successful targeted monoclonal anti-
** This project has been funded in the name of Jeffrey Stafford
bodies (mAbs) therapy has had clinical
(by the WAMP Swim-a-Thon member fundraising event organized
efficacy in lymphomas (anti-CD20 mAbs)
by Mr. Stafford's children) and in the name of Mark Rubin (by the
and in breast cancer (anti-EGFR mAbs).
Music Against Myeloma member fundraising event organized by son
Unfortunately, due to the lack of an available therapeutic antibody in
Slava Rubin).
clinical trails, no such approach has yet been developed for myeloma.
***This annual myeloma research grant was instituted in 2002
The overall goal of Dr. Yang's research project is to develop more effective
by IMF Japan in memory of its founder, Aki Horinouchi.
therapeutic mAbs to eradicate myeloma cells for clinical study. Dr. Yang
and her colleagues recently made a novel and exciting discovery that
The IMF offers grants to doctors and researchers working in the field
mAbs specific for human 2-microglobulin (2M) had remarkably strong
of myeloma. To apply for 2009 funding, please download a grant
apoptotic activity both in established myeloma cell lines and in primary
application from the IMF website www.myeloma.org or call
myeloma cells from patients. These mAbs selectively targeted and killed
800-452-CURE (2873) to request an application to be mailed to you.
myeloma cells in coculture with a large amount of normal hematopoietic
8
www.myeloma.org
Scientific & Clinical
serum free LigHt cHain testing for diagnosis and monitoring
Myeloma Today in conversation with Dr. Sundar Jagannath
Please give us a brief overview of myeloma
In 2%-3% of myeloma patients, the cancer cells
diagnosis and monitoring.
have become so de-differentiated that they have lost
Multiple myeloma is a cancer of the plasma cells.
all ability to make protein and release it into the
Cancerous plasma cells start from one single cell and
blood. This is called "non-secretory" myeloma. In
multiply over time into a large population of "mono-
the past, only frequent bone marrow biopsies and
clonal" cells. Plasma cells make antibodies (proteins
imaging scans could effectively help to monitor such
also known as immunoglobulins) that can be detected
patients.
and measured in the blood of approximately 80% of
Has this changed with the availability of the
myeloma patients. The monoclonal protein made by the
FreeliteTM technolog y?
malignant plasma cells gives rise to the M-spike in the
serum protein electrophoresis (SPEP) test, which has
Well into the year 2000, there was no available serum
been used for many years to screen for myeloma, MGUS,
test to identify the light chain in the blood. We could
and AL amyloidosis. The protein also shows up in the
only measure complete proteins in the blood and
urine as Bence Jones protein, named after the doctor
the light chain in the urine. Then, thanks to doctors
who first published his study of this protein in the urine
in the UK, there was a major breakthrough in the
of a myeloma patient in 1848. For many years, we used
detection and monitoring of myeloma. They created
simple blood and urine tests to diagnose myeloma, and
the antibody that would recognize the light chain. Of
Sundar Jagannath, MD
to monitor treatment and disease progression. These
course, since all normal proteins have equal numbers
St. Vincent's Comprehensive Cancer Center
tests were surrogate markers that allowed us to reduce
New York Medical College
of light and heavy chains, it was most important to be
the number of bone marrow biopsies and imaging scans
New York, NY
able to specifically detect excess light chain protein
that a patient would have to be subjected to.
that was free of the heavy chain. With Freelite Serum
Free Light Chain Assays, we finally had a new technology capable of detect-
Would you please explain the relationship between cancer cells and
ing and measuring free light chain in the blood.
antibodies?
This was a huge breakthrough that made several important things pos-
The antibody is made up of a big protein, which we call "heavy chain,"
sible. Freelite has enabled us to monitor disease in patients with a mono-
and a small protein known as "light chain." Normal plasma cells make
clonal protein that cannot be measured by conventional electrophoretic
complete antibodies, where one big and one small protein are attached to
methods, so we can now monitor all but a very few myeloma patients.
each other, with each antibody having two sets of these paired proteins.
Patients who were previously unable to participate in clinical trials can
The job of the normal plasma cells is to protect us from infection. But
now have access to the same opportunities as patients with secretory
cancer cells are only interested in growing and multiplying, not in making
myeloma. Freelite has reduced the need for urine studies, especially the
antibodies. Some cancer cells do make big and small proteins in equal
24-hour urine collection, which can be very impractical or inconvenient
quantity such malignant cells are still good antibody producers and
for patients. Together with the use of SPEP and immunoelectrophoresis,
these proteins show up in the blood as the M-spike, and corresponding
Freelite has improved the diagnosis of monoclonal gammopathies and
IgG or IgA will become elevated.
the risk assessment for progression of MGUS (monoclonal gammopathy
But other cancer cells become what we would term more "de-differenti-
of undetermined significance) to myeloma. For patients with primary or
ated" they are more immature, reproduce more rapidly, and are less
AL amyloidosis, we now have a new way to monitor their disease and
efficient at making antibodies. Sometimes such cells make few big proteins
measure the efficacy of their treatment. If a patient has both light chain
but lots of small proteins, which results in an excess of light chains. In the
and heavy chain myeloma, Freelite allows us to detect the response to
past, we were not able to measure the light chains in the blood because
treatment much more quickly than previously possible. Also, in patients
small proteins can be easily filtered out by the kidneys into the urine as
who make excess light chain, Freelite is a much more sensitive and precise
Bence Jones protein. In some patients, the kidneys re-absorb quite a bit of
way to confirm if a patient has achieved complete remission.
the protein that has been filtered, so the amount of Bence Jones protein
The Freelite Serum Free Light Chain Assay is not an experimental test it
that can be measured does not accurately correlate with the amount of
is FDA-approved and widely available, so patients can ask for it wherever
light chain protein produced by the cancer cell. So there are groups of
they are receiving their medical care. This is an important new advance-
patients whose myeloma has historically been difficult to monitor. For
ment in technology that has improved the lives of many people living with
monitoring the disease in such patients, there was no alternative to per-
myeloma and other B-cell dyscrasias. mt
forming frequent bone marrow aspirations and imaging scans.
Editor's Note: Dr. Jagannath is Chief of the Multiple Myeloma Program
How many myeloma patients fall into these categories?
and Bone Marrow and Stem Cell Transplantation Program at St. Vincent's
Light chain myeloma occurs in 10%-20% of patients. These patients don't
Comprehensive Cancer Center (SVCCC) and a professor of medicine at
make the heavy protein at all, so no M-spike abnormality can be measured
New York Medical College. He has received numerous awards for his
work related to the study and treatment of myeloma. Dr. Jagannath is an
in blood tests. In such cases the IgG or IgA numbers are actually low. But
Editor-in-Chief of Clinical Lymphoma & Myeloma. He has been published
a 24-hour urine collection will reveal lots of light chain protein in the
in numerous medical journals, for which he is also a peer reviewer. Dr.
urine so, in the past, this was our best way to measure myeloma in such
Jagannath is an active member of the American College of Physicians,
patients.
the American Society of Clinical Oncology, and the American Society of
Hematology.
800-45-CURE(87)
Scientific & Clinical
update on tHe imf's Bank on a cure® researcH initiative
Myeloma Today in conversation with Dr. Brian Van Ness
What are the most recent developments
therapeutic and prevention cancer clinical
in the IMF's Bank On A Cure® research
trials. CRAB assures accurate trial implemen-
initiative?
tation and reliable data analyses. At CRAB, we
Bank On A Cure was initiated by the IMF
are able to combine data sets from clinical
to establish a consortium and centralized
trials both in the US and abroad. The IMF is
approach for DNA banking and genotyping in
committed to developing conglomerate data
multiple myeloma. Our mission is to create a
analysis of genetic variations, and this follows
DNA bank and develop genetic correlates with
on the heels of the successful international
myeloma risk, progression, response, and
conglomerate analyses that resulted in the
toxicities associated with therapies. Bank On
new International Staging System (ISS). The
A Cure is an international effort that includes
Bank On A Cure platform from SNPs is iden-
investigators from the US and abroad, and a
tical in US and in European laboratories, so
representative patient advocate.
the data sets can be easily merged.
In October 2007, we sought and received affil-
Samples have also been collected directly
iate membership in the Pharmacogenomics
from myeloma patients through the Bank
Research Network (PGRN), a nationwide col-
On A Cure "swish and spit" kits, and we are
laboration of scientists working on advancing
working with the National Cancer Institute
knowledge of the genetic basis for variable
(NCI) on looking at genetic risk factors that
drug responses identifying genetic varia-
are associated with environmental expo-
Brian Van Ness, PhD
tions that lead to differences in therapeutic
sures in order to develop a risk assessment
Institute of Human Genetics
response which is very much in line with
University of Minnesota
tool that might provide a prediction of
the goals of Bank On A Cure. The PGRN
Minneapolis, MN
risk for myeloma. We are working with the
consortium is comprised of 12 independently-funded interactive research
InterLymph Consortium, the NCI group that
groups, with each research group focusing in an identified area of phar-
is an open scientific forum for epidemiologic research.
macogenetics. The PGRN is sponsored by the National Institute of General
What are some of the significant advances that have resulted from
Medical Sciences (NIGMS), which is one of the National Institutes of
Bank On A Cure?
Health (NIH). NIGMS supports important scientific research that lays the
One of the unique contributions made by Bank On A Cure is the cre-
foundation for advances in disease diagnosis, treatment, and prevention.
ation of a custom single nucleotide polymorphism (SNP) chip, globally
In the US, we have developed Bank On A Cure in conjunction with large
targeting a large array of cellular functions and interactions. This custom
national clinical trial groups, such as the Eastern Cooperative Oncology
SNP gene panel was developed in collaboration with Affymetrix to target
Group (ECOG) and the Southwest Oncology Group (SWOG), as well as
coding non-synonymous and regulatory SNPs in targeted genes involved
with institutional centers of large clinical trials, such as Mayo Clinic and
in ADME (absorption, distribution, metabolism, and excretion of drugs),
the University of Arkansas for Medical Sciences (UAMS).
DNA repair, cell cycle, inflammatory response, growth factor/cytokine, sig-
naling, etc. that were determined to have potential importance in tumor
In Europe, Bank On A Cure has recruited the British Medical Research
progression and response.
Council (MRC) trials, the Dutch HOVAN trial, and are working with the
French, German, Spanish, and Italian trial groups. Our goal is to create a
We have used a wide variety of analytical techniques including pathway
bank of 10,000 myeloma patient samples, and we are about half-way to
analysis, creating cluster and partitioning trees of SNP group effects, vec-
that goal.
tor algorithms that identify group associations, and multi-variate analyses
combining SNP profiles with tumor cell gene expression profiles.
What are some of the basic components of Bank On A Cure?
We have done a lot of genetic analysis on samples received from myeloma
To date, the Bank On A Cure SNP panel has been run on approximately
clinical trials. These trials have a very good set of therapeutic controls,
1,000 myeloma patient samples, and 200 controls. There are three current
and clinical data and follow-up information on every patient. We have
Bank On A Cure studies. I am leading the investigation that focuses on
studied data from several large Phase III myeloma clinical trials and have
study design and association with survival. Dr. Brian Durie is leading the
found meaningful information on survival, incidence and severity of
investigation of bone disease associated with UAMS studies. Dr. Gareth
bone disease, and the incidence of adverse effects from several specific
Morgan is leading the investigation of genetic predictors of adverse drug
myeloma drugs.
effects, particularly blood clotting. The data will be analyzed in associa-
tion with specific clinical end-points. Three manuscripts are currently in
Gathered from around the world, Bank On A Cure data is assembled
preparation. Dr. Morgan and Dr. Dalsu Baris (NCI) are working to develop
in Seattle, WA, at Dr. John Crowley's Cancer Research And Biostatistics
risk assessments by doing case-control studies.
(CRAB®), an international leader in designing, managing, and analyzing
Continues on next Page
10
www.myeloma.org
Scientific & Clinical
cLinicaL triaLs update: ZoLinZa® (vorinostat)
Treatment Demonstrates Clinical Activity in Phase I Studies of Patients with Advanced Multiple Myeloma
ZOLINZA® (vorinostat) is a histone
43% of patients had a partial or greater
deacetylase (HDAC) inhibitor. In
response from the combination treatment.
some cancer cells, excess amounts of
In addition, 25 patients in the 2 studies,
the HDAC enzyme prevent the activa-
who previously received bortezomib have
tion of genes that control normal cell
demonstrated that 48% of the patients had
activity. Based on in vitro studies, vori-
either a VGPR, PR or MR.
nostat is believed to decrease the activity
These first Phase I myeloma trials of vorino-
of HDAC, allowing for the activation of
stat in combination with bortezomib evalu-
genes that may help to slow or stop the
ated the safety and efficacy of vorinostat as
growth of cancer cells.
part of a combination regimen in patients
Vorinostat (approved in October 2006
with relapsed and/or refractory myeloma.
for the treatment of cutaneous mani-
The primary objective of both trials was
festations in patients with cutaneous
Donna M. Weber, MD
Ashraf Z. Badros, MD
to determine the maximum tolerated dose
T-cell lymphoma (CTCL), a type of non- Associate Professor of Medicine
Associate Professor
(MTD) of vorinostat in combination with
Hodgkin's lymphoma, who have pro-
University of Texas
of Medicine
bortezomib in these patients; secondary
gressive, persistent, or recurrent disease
MD Anderson Cancer Center
University of Maryland
objectives included assessment of activ-
Houston, TX
Greenebaum Cancer Center
on or following 2 systemic therapies)
ity (using European Group for Blood and
Baltimore, MD
is currently being studied in multiple myeloma. Data from two inves-
Marrow Transplantation criteria for Dr.
tigational Phase I trials of vorinostat in combination with bortezomib
Weber's study and International Working Group Criteria for Dr. Badros'
(VELCADE®) were presented at the 49th annual meeting of the American
study) and safety and tolerability of the combination regimen. Bortezomib
Society of Hematology (ASH). Results demonstrate promising anti-tumor
is regarded as a standard treatment option against myeloma, while the use
activity in patients with relapsed or refractory myeloma, even for patients
of vorinostat in myeloma patients is investigational.
who have previously failed treatment with bortezomib therapy.
Larger clinical studies are needed to confirm these results, and Merck &
Data from one study led by Dr. Donna M. Weber of the MD Anderson
Co. Inc. is evaluating plans to accelerate testing of vorinostat in combina-
Cancer Center demonstrated that 48% of patients had a partial or minimal
tion with bortezomib in the randomized clinical trial setting to further
response from the vorinostat and bortezomib combination treatment.
define the clinical activity in relapsed or refractory myeloma. For more
Data from a second study, sponsored by the National Cancer Institute
information, please visit www.merck.com or call the IMF Hotline at
(NCI) under a Clinical Trials Agreement with Merck & Co. Inc., and led
800-452-CURE (2873). mt
by Dr. Ashraf Z. Badros of the University of Maryland demonstrated that
BANK ON A CURE UPDATE -- continued from previous page
What are the benefits of Pharmacogenomics Research Network
devoted specifically to data analysis and new approaches in statistics and
membership?
genetic data.
Our Bank On A Cure consortium is committed to both creating and shar-
But the bottom line is that, with the PGRN, Bank On A Cure has now
ing data bases. In fact, we provide a fully annotated SNP panel via an open
established its connection with a nationally prominent consortium net-
access web link, and we are happy to provide more comprehensive data to
work. The sharing of information among PGRN participants will benefit
the PGRN. There are multiple benefits in doing so. Firstly, the PGRN has
both Bank On A Cure and investigators working on other diseases. (Of
a process in place by which they discuss and share data analysis, and we
course, we are committed to data sharing within the limits of HIPPA and
hope that the information gleaned from the Bank On A Cure project will
protecting patient anonymity.)
be of interest and of use to other investigators. Secondly and significantly,
we hope that the input we receive from other investigators will contribute
How is the information garnered from Bank On A Cure applicable
to improving the Bank On A Cure SNP design. All PGRN members benefit
to other diseases?
from a combined and open source of genetic information, and our Bank
I would argue that, while myeloma is leading the way as an international
On A Cure consortium has sufficient important data and analysis to con-
consortium, what we are doing is establishing a paradigm for genetic
tribute to the network. We have some very interesting genetic association
analysis in a number of different diseases. We are looking for genetic
to share with other investigators.
associations, and the same genetic variants we see in myeloma can be
examined in other diseases. We have established a bank, a genetic panel,
Given the vast amount of research data, arriving at the key meaningful
and a platform to develop the technologies, and everyone stands to ben-
statistical analysis is a challenge. The PGRN is committed to identifying
efit from these efforts. mt
approaches that provide some of the best answers in understanding the
link between genetics and therapeutic outcomes. The PGRN holds three
Editor's Note: Dr. Van Ness is Co-Director of Bank On A Cure. He is
meetings a year for participants to discuss their work and bring new ideas
Director of the Division of Medical Genomics in the Institute of Human
to the table. The next PGRN meeting, which will take place in January, is
Genetics, and is Professor and Head of the Department of Genetics, Cell
Biology, and Development at the University of Minnesota.
800-45-CURE(87)
11
Special Event
ceLeBrating peter BoyLe
Event Sponsors
Presenting Sponsor
An Evening of Comedy with Family and Friends
Diamond Sponsor
Millennium Pharmaceuticals
Emerald Sponsor
CBS Corporation
Ruby Sponsors
HBO Inc.
Los Angeles Confidential Magazine
Novartis Pharmaceuticals
Monica & Philip Rosenthal
Worldwide Pants
Loraine Boyle (center), with daughters Lucy and Amy Boyle, thanks event performers Patricia Heaton,
Richard Lewis, Fred Willard, Doris Roberts, Martin Short, and Ray Romano
Sapphire Sponsors
The IMF held its annual Gala event on hesitant because they wanted to keep Peter's
November 10, 2007. This year's event was
struggle with myeloma a private matter.
Kevin & James Abernathy
truly amazing and
After Peter lost his four-year
AMGEN Oncology
quite a break from
battle with myeloma, his family
past events it was
Ruth & Jake Bloom
agreed that a fitting memorial
Celebrating Peter
Janet & Marvin Rosen
would be to raise funds in sup-
Boyle An Evening
Diane Passage & Ken Starr
port of research into the dis-
of Comedy with
ease, as well as to raise myeloma
Robert, Daniel & Susie Waring
Family & Friends.
awareness. Thus began the year-
Phyllis & Allan Weinstein
The idea for this
long road that culminated with
event was born a
a spectacular "Celebration."
year ago, shortly
Topaz Sponsors
Loraine reached out to Peter's
after Peter Boyle
friends and fellow cast mates
Aptium Oncology, Inc.
passed away. Dr.
Peter Boyle's wife, Loraine (center),
from Everybody Loves Raymond.
Booz-Allen & Hamilton, Inc.
Brian G.M. Durie
with daughters Lucy and Amy Boyle
Her first call was to
was Peter's doctor and saw him when
Robin Green & Mitchell Burgess
Ray Romano, who
he would come to L.A. from New
Cindy & Jim Gilbert
would headline and
York for the shooting of Everybody
Indianapolis Colts, Inc.
host the show. She
Loves Raymond, or on other movie
kept calling, and
Carol & Benson Klein
business. He saw him "under the
they all said yes
Alex Meneses & John Simpson
radar," as Peter didn't want anyone
Patricia Heaton,
Kathleen Moore
to know that he had been diagnosed
Doris Roberts, and
with multiple myeloma. In time, Dr.
Sharon & Chuck Newman
Fred Willard. Brad
Durie and I became friends with
Ortho Biotech
Garrett was already
Peter and his wife, Loraine.
Perrier Jouet
committed to be
Loraine and I spoke on occasion
out of town; how-
Cindy & Igor Sill
about Peter and Loraine becom-
ever he pledged to
Lorraine & Karl Vollstedt
IMF Chairman Dr. Brian Durie and
ing involved with the IMF; she was
President Susie Novis
support the event.
1
www.myeloma.org
Special Event
Honorary Co-Chairs
Irena & Mike Medavoy · Julie Chen & Leslie Moonves
The all-star comedy
Bringing an event
Chair
line-up took shape
like this to fruition
Loraine Boyle
including several of
took months of hard
Vice Chair
Peter's other good
work, commitment,
Tova Bonem
Honorary Commit ee
friends: Jeff Garlin,
and dedication from
Kevin & James Abernathy
Richard Lewis, and
so many people. It
Alec Baldwin
Martin Short.
began with Loraine
Candice Bergen
and the outstand-
Halle Berry
Stu Smiley, Robert
ing team at the IMF
Lisa Birnbach
Morton, and Ken
Ruth & Jake Bloom
spearheaded by
Mike Medavoy,
Shapiro all said
Lorraine Bracco
Heather
Cooper
President and CEO
yes when the call
Cornelia Sharpe Bregman & Martin Bregman
of Phoenix Pictures,
Ortner,
Spencer
Leigh Brillstein & Abe Hoch
came from Loraine
served as honorary
Howard,
Randi
Jayni & Chevy Chase
co-chair for the event and
as to who would
Liberman, and Jim
Rita & Joe Cohen
provided the opening
help produce and
Blythe Danner
Needham and
remarks for the show
direct the show.
Lisa Doty & Stu Smiley
included every staff member, family, and
She put together
Caroline Ducrocq & Howard Hesseman
friends. The entire cast and crew donated
Andrea Eastman
an
Honorary
their time and talent.
Edie Falco
C o m m i t t e e
Actor Ray Romano hosted the
Marc Forster
that reads like
show, keeping the audience
On Saturday, November 10, 2007, the doors
Paula & Peter Gallagher
"Who's Who in
laughing between the acts and
opened, and the show began complete
Brad Garrett
sharing poignant memories
Ronda Gomez-Quinones & Howard Zieff
Hollywood!"
with red carpet arrivals and the media on
of Peter Boyle from their years
Carl Gottlieb
together on Everybody
hand. On
Robin Green & Mitchell Burgess
Loves Raymond
the carpet
Deborah & Allen Grubman
were Loraine
Patricia Heaton & David Hunt
The IMF is grateful to
and her daugh-
Michael Keaton
all of our sponsors,
Erik Kritzer
ters, Lucy and
led by Presenting
Robin Leach
Amy.
Along
Sponsor
Celgene,
Stuart Lerner
with the cast
Rick Marotta
for helping to pro-
for the show
Anne Hearst McInerney & Jay McInerney
vide the support to
Jenny & Robert Morton
were
media
make this event so
Annette O'Toole & Michael McKean
mogul
Mike
successful. Please see
Diane Passage & Ken Starr
M e d a v o y ,
Chynna Phillips & William Baldwin
the complete list of
actors
Billy
Paula Prentiss & Richard Benjamin
all our sponsors.
B a l d w i n ,
Doris Roberts
Anna & Ray Romano
M i c h a e l
Renowned actor and comedian
Jane Rose
Keaton, Alfre
Martin Short brought the house
Janet & Marvin Rosen
Woodard, Joe
down with his hysterical song
Monica & Philip Rosenthal
Comedian Richard Lewis
"Autumn Makes Me Want
Walsh,
John
Victoria Tennant & Kirk Stambler
made the audience laugh
to Cheat on My Wife."
with his unique view
Glover, Peter
Chrisann Verges & Ricky Jay
Mary & Fred Willard
of the world
Gallagher, Teri Garr, and
Alfre Woodard & Roderick Spencer
Thomas Ian Nicholas.
Dr. Durie and Susie
Novis also walked the
press line. CNBC News,
Access Hollywood, TV
Guide Channel, New2Air,
WireImage, and the
Hollywood
Reporter
covered the event, which
was crucial because rais-
Fred Willard
ing awareness about
performed a
Actor and comedian Jeff
campy musical
myeloma is as important
Garlin cracked up the
number
as raising money.
Patricia Heaton shared
audience with his humorous
"Artificial Flowers."
her personal memories
take on everyday life
of Peter Boyle
Continues on next Page
800-45-CURE(87)
1
Special Event
CELEBRATING PETER BOYLE -- continued from page 14
A cocktail hour began the evenings' festivities, and with The Wilshire
campy and fun musi-
Ebell's beautiful sprawling setting, more than 500 guests floated from
cal number, "Artificial
room to room, chatting with one
Flowers," accompa-
another, enjoying a drink, and deli-
nied by noted pia-
cious hors d'oeuvres.
nist Jeff Babko, Paul
Wilson on violin, and
With the show about to begin, guests
five talented back-
made their way into the theatre
up singers. Patricia
where they were joined by another
Heaton and Doris
600 people who were there just for
Roberts both shared
the show.
Doris Roberts reminisced about Peter Boyle and
funny and touching
Mike Medavoy, chairman and CEO of
then shared a moment on stage with Ray Romano memories of working
Phoenix Pictures opened the show.
with Peter; it is clear they miss him deeply. Brad Garrett, who couldn't be
He introduced a short video about
there in person as he was out of town on location, was there virtually, and
Ray Romano and Loraine Boyle
the IMF, which highlighted the foun-
he too expressed his deep affection for Peter. The finale of the show was
at the post-show VIP Champagne
dation's areas of focus and featured
Martin Short being Martin Short; his act culminating in a hysterical musical
and Dessert Reception
number called "Autumn Makes Me Want to Cheat on
patients' experiences in deal-
My Wife," which brought the house down.
ing with myeloma. Dr. Durie
The stars from the show joined the guests for an after-
and I then came on stage,
show champagne and dessert party; they were very
greeted the guests and spoke
gracious and open to having their pictures taken with
about the IMF and myeloma.
the fans. People once again enjoyed the surroundings
Dr. Durie talked about the
and each other's company while they chatted about
Bank On A Cure® DNA ini-
the show, sipped champagne, and nibbled on the deli-
tiative, current research, and
cious desserts as the evening came to a close.
possible links to what may
cause other cancers. Our
(l to r) Loraine Boyle, Fred Willard, actor Michael Keaton and
The IMF raised $650,000 to support the Peter Boyle
message was one of collabo-
Peter Boyle's sister, Alice Duffy, at the post-show VIP reception
Memorial Fund, and we're forever grateful to Loraine,
ration, the importance of working together to end myeloma, and how
Lucy and Amy Boyle, and their family and friends for making the event
advances made in myeloma can help other diseases too.
possible and a huge success!
In memory of Peter Boyle, a wonderful retrospective film montage that
We hope you will
featured highlights from his extensive body of work was shown. It was
join us for next
funny, poignant, moving, and reminded people of what an incredibly
year's
event!
talented and versatile actor Peter was.
We'll let you
know the date
A huge applause followed the film and Ray Romano, host of the show
soon!
took the stage; the audience spent the next hour and a half in raucous
mt
laughter. Jeff Garland and Richard Lewis also performed outrageous,
bawdy, and hysterically funny comedy routines. Fred Willard performed a
Guests enjoy champagne and dessert at the
post-show VIP reception at the historic Wilshire Ebell
Other celebrity guests in attendance: (l to r)
John Glover, William Baldwin, Joe Walsh, Alfre Woodard,
Peter Gallagher, Kimberly Alexander, Thomas Ian Nicholas
14
www.myeloma.org
Nurse Leadership Board
nLB activities update
Page Bertolotti, RN, BSN, OCN
Cedars-Sinai Medical Center
Myeloma Today in conversation with Jeanne Westphal and Ginger Love
Samuel Oschin Comprehensive Cancer Institute
Los Angeles, CA
Elizabeth Billoti, ANCP, ONP, AOCN
Members of the
do. Patient Education
St. Vincent's Hospital
Nurse Leadership
is incredibly help-
New York, NY
Board (NLB)
ful for them and very
Kathleen Colson, RN, BSN, BS
Dana-Farber Cancer Institute
recently divided
rewarding for me.
Boston, MA
into new task
I recently spoke to
Kathleen Curran, RN, BSN, BS
forces. Please tell
about 30 members
University of Pittsburgh
us about that.
of the local myeloma
Pittsburgh, PA
Deborah Doss, RN, OCN
Jeanne: Once the
support group about
Dana-Farber Cancer Institute
NLB members com-
side effects and it was
Boston, MA
pleted our first major
one of the best experi-
Beth Faiman, RN, MSN CNP, AOCN
project of developing
ences I've had. They've
Cleveland Clinic
Taussig Cancer Center
nurse guidelines for
invited me to return
Cleveland, OH
Jeanne Westphal, RN
enhanced patient care,
Ginger Love, RN
in February and I am
Meeker County
Maria Gavino,
University of Cincinnati
RN, BSN
and these consensus
really looking forward
Memorial Hospital
M. D. Anderson Cancer Center
College of Medicine
guidelines proceeded
Litchfield, MN
Cincinnati, OH
to that!
Houston, TX
to journal publica-
Teresa Jahns Miceli, RN, BSN
What other NLB projects are you currently
Mayo Clinic
tion, we turned our attention to addressing Patient
involved in?
Rochester, MN
Education, Nurse Education, Long-Term Side Effects,
Jeanne: While the members of the NLB are divided
Bonnie Jenkins, RN, OCN
and Publications. I am the leader of the Publications
University of Arkansas for Medical Sciences
into teams, we all support one another, both as
task force, which also includes my colleagues Kathy
Little Rock, AR
groups and as individuals. So ultimately everyone
Lilleby, Joseph Tariman, and Tiffany Richards. Our
Kathy Lilleby, RN
participates in all the NLB activities. One new project
Fred Hutchinson Cancer Research Center
team's mandate is to heighten the profile of myeloma
I'd like to specifically mention was suggested to the
Seattle, WA
in the press and to make sure that information about
NLB by Dr. Brian G.M. Durie, chairman of the IMF.
Ginger Love, RN
the disease and its treatments reaches as many people
University Hematology Oncology Care
We will be working on defining a process to collect
Cincinnati, OH
as possible. In addition, we participate on the Long-
data from myeloma patients, capturing the informa-
Patricia A. Mangan, MSN, CRNP
Term Side Effects task force, as do all other members
tion by means of a questionnaire. The goal is to
Hospital of the University of Pennsylvania
of the NLB.
Philadelphia, PA
examine the long-term effects of myeloma therapies,
Emily McCullagh, RN, NPC, AOCN
Ginger: This is an exciting time in myeloma care
from conventional chemotherapy to novel agents. We
Memorial Sloan-Kettering Cancer Center
because, with novel therapies, patients are living
have finally reached the point in the field of myeloma
New York, NY
longer after diagnosis. But side effects of these thera-
where there is lots of data to collect on the effects of
Teresa Miceli, RN, BSN
pies can greatly impact a patient's ability to live a full
long-term therapies!
Mayo Clinic
Rochester, MN
life. I am leading the Patient Education task force,
How frequently do members of the NLB interact
Kena Miller, MSN, FNP
which also includes Deb Doss, Bonnie Jenkins, Teresa
with one another?
Roswell Park Cancer Institute
Miceli, and Jacy Boesiger. We are currently fine-tuning
Lewiston, NY
the patient education slide presentations for talks at
Jeanne: We meet several times a year. Most recently,
Katy Rogers, RN
the IMF Patient & Family Seminars. Because not all
we met at the 49th annual meeting and exposition of
Sidney Kimmel Comprehensive Cancer Center
Johns Hopkins University
patients are able to travel to attend these meetings,
the American Society of Hematology (ASH) in Atlanta.
Baltimore, MD
we are also working on developing presentations for
The majority of the NLB members were in attendance,
Sandra Rome, RN, MN, AOCN
outreach visits to myeloma support groups. In addi-
which gave us an opportunity to meet multiple times
Cedars-Sinai Medical Center
tion, we are exploring other means of effectively deliv-
in the course of the ASH meeting. But we also orga-
Samuel Oschin Comprehensive Cancer Institute
Los Angeles, CA
ering information to patients, and this may include
nize and attend our own NLB retreats.
Stacey Sandifer, RN, BSN
printed publications. It is essential to present patients
Ginger: The 2008 NLB meetings are in the process
Cancer Centers of the Carolinas
with comprehensive information, while keeping the
of being scheduled. In the meantime, we have a
Greenville, SC
information very accessible.
conference call scheduled for January, plus the IMF
Lisa Smith, MSN, FNP, AOCN
Cancer Centers of the Carolinas
How were NLB members divided into these task
has set up a web portal to give us easy access to com-
Greenville, SC
forces?
munication and conferencing. Members of the NLB
Joseph Tariman, RN, MN, ARNPBC, OCN
are wonderful individuals, who have a tremendous
Northwestern University
Ginger: We voted our personal preferences, and it
Seattle, WA
cumulative depth of knowledge about myeloma, and
seems that everyone is working in their area of inter-
Jeanne Westphal, RN
it's very helpful to be able to tap into so much nursing
est. Teaching patients is one of my favorite things to
Meeker County Memorial Hospital
experience! mt
Litchfield, MN
800-45-CURE(87)
15
Supportive Care
imf HotLine coordinators answer your Questions
The IMF Hotline 800-452-CURE (2873) is staffed by Debbie Birns, Paul Hewitt, and Nancy Baxter.
The phone lines are open Monday through Friday, 8am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
I have been diagnosed with "smoldering
progress to active disease. The median time
myeloma." Is that an earlier stage than
to progression is 2 years.
stage I?
· In the middle risk group, patients have
There are several names for smoldering
10% or more plasma cells in the bone mar-
myeloma, and they are used interchangeably.
row, but less than 3 grams of monoclonal
Smoldering myeloma, indolent myeloma,
protein. Their risk of progression to myelo-
asymptomatic myeloma, and Durie Salmon
ma in a 15-year period is 70%. The median
Stage IA myeloma are synonyms for the same
time to progression is 8 years.
condition, as defined in the International
Myeloma Working Group's Myeloma
· In the lowest risk category, patients have
Management Guidelines (The Hematology
less than 10% plasma cells in the bone mar-
Journal, 2003). The basic criteria for smol-
row and less than 3 grams of monoclonal
dering or asymptomatic myeloma set forth in
protein. Their risk of progression to active
Hotline staff: Debbie Birns, Paul Hewitt, and Nancy Baxter
the Management Guidelines are: hemoglobin
disease is 39% at 15 years. The median time
value of > 10 g/dl, serum calcium < 10.5 mg/dl, bone X-ray normal,
to progression is 19 years.
M-protein rates of < 5 g/dl for IgG or < 3 g/dl for IgA, and < 4 g of
Based on the Mayo study, the overall probability of progression to active
urine light chain M-protein on electrophoresis in a 24-hour period. The
disease over a 20-year period is 78%.
requirement for smoldering myeloma is that the patient should have no
In addition, an article recently appeared in the online publication Blood
symptoms or organ damage; that is, no Calcium elevation, kidney (Renal)
First Edition (October 17, 2007) by Dispenzieri, Kyle, et al. of the Mayo
dysfunction, Anemia, or Bone disease -- the so-called CRAB criteria.
Clinic that is entitled "Immunoglobulin Free Light Chain Ratio Is an
Is there anything I can do to prevent smoldering myeloma from
Independent Risk Factor for Progression of Smoldering (Asymptomatic)
progressing to active myeloma?
Multiple Myeloma." Dr. Dispenzieri's research enables clinicians to incor-
Because patients with smoldering myeloma are monitored by their doc-
porate the results of the FreeliteTM Serum Free Light Chain Assays test.
tors without being given treatment, this is an opportune time to con-
(For more information on this test, please see interview with Dr. Sundar
centrate on making life-style adjustments that can have a positive impact
Jagannath in this issue of Myeloma Today.) Freelite measures the number
on your overall and immune system health: reduce stress, get regular
of kappa and lambda free light chains and then expresses these numbers
sleep and exercise (nothing risky or high-impact), and eat well (avoid
as a ratio, into the risk model for progression to active myeloma:
white flour, sugar, and fats, and increase whole grains, fresh fruits and
· Patients in the highest risk group whose kappa/lambda free light chain
vegetables, and lean protein). Red wine and the skin of red grapes are
(FLC) ratio is <0.125 (excess lambda light chains) or >8 (excess kappa
known to contain resveratrol, an anti-oxidant that is being studied for its
light chains) have a 75% risk of progression to active myeloma at 10
anti-myeloma effects. Including these items in your diet, in moderation,
years. Those with a FLC ratio greater than or equal to () 0.125 or less
may be beneficial as well.
than or equal to () 8 have a 51% risk of progression to active disease at
In addition, especially for those who fall into the highest risk group for
10 years.
progression to active myeloma, there are clinical trials studying interven-
· Patients in the intermediate risk group with a FLC ratio of <0.125 or >8
tions that may prevent progression. Two that are now enrolling patients
have 57% risk of progression to active disease at 10 years; those with a FLC
are a Phase II trial of celecoxib (Celebrex®), and a Phase III trial of zole-
ratio 0.125 or 8 have a 40% risk of progression at 10 years.
dronate (Zometa®) with or without thalidomide (Thalomid®).
· Patients in the lowest risk group for progression to myeloma who have
What are the risk factors that my smoldering disease will progress
a FLC ratio of <0.125 or >8 have a 25% risk of progression to active
to active myeloma?
myeloma at 10 years; those with a FLC ratio of 0.125 or 8 have a 23%
In the Fall 2007 issue of Myeloma Today, Dr. Robert A. Kyle men-
risk of progression at 10 years.
tioned his article entitled "Clinical Course and Prognosis of Smoldering
An important caveat to remember in assessing risk is that these models
(Asymptomatic) Myeloma," which was published this past June in the New
are based on statistics and averages; they do not take into account the
England Journal of Medicine.
individual influences on risk that affect any given patient. They are good
Dr. Kyle and his colleagues, after long-term study of patients at the Mayo
general guidelines, but are not entirely predictive of what will happen to
Clinic, used their data to create a three-tier chart that ranks the risks of
you as an individual patient.
progression from smoldering to active myeloma. The most predictive
Why isn't my doctor treating me now, before the myeloma
criteria, of the many studied, turned out to be the percentage of plasma
progresses and I have symptoms? I thought that "early detection is
cells in the bone marrow and the amount of monoclonal protein present
your best protection."
in the blood. According to the Mayo data:
We realize that not treating myeloma before it causes symptoms seems
· Those at highest risk for progression have 10% or more plasma cells
counterintuitive, but randomized studies have failed to demonstrate any
in their bone marrow and 3 grams or more of monoclonal protein per
added benefit with immediate systemic therapy in patients with asymp-
deciliter of blood. There is an 87% chance that within 15 years, they will
tomatic (smoldering) myeloma.
Continues on next Page
1
www.myeloma.org
Supportive Care
myeLosuppression
Myeloma Today in conversation with Kathy Lilleby, RN
What is myelosuppression?
or thrombocytopenia at the discretion of the patient's
Myelosuppression is a common and expected side
physician. It is important to note that blood products
effect associated with novel anti-myeloma therapies.
should be leukocyte-reduced to reduce the risk of
Novel therapies for multiple myeloma include the
febrile reactions, human leukocyte antigen (HLA) allo-
immunomodulatory drugs lenalidomide (Revlimid®)
immunization, and cytomegalovirus (CMV) infection.
and thalidomide (Thalomid®), and the proteasome
General transfusion guidelines are available through
inhibitor bortezomib (Velcade®). These agents have
the American Association of Blood Banks, America's
contributed to increased response rates and increased
Blood Centers, and the American Red Cross.
survival times for myeloma patients. However, they
Management of anemia should take into account that
can cause myelosuppression anemia, neutrope-
some patients may tolerate a greater degree of ane-
nia, and thrombocytopenia. These side effects are
mia than other patients. Generally accepted practices
manageable with appropriate medical interventions
to manage anemia include the use of erythropoiesis-
and patient and caregiver education. If not managed
stimulating agents and red blood cell transfusions.
effectively, these side effects have the potential to
Generally accepted practices to manage neutropenia
be life-threatening, and to interfere with optimal
include initiation of institutional standards for neutro-
therapy. In addition to these physiologic effects,
penic precautions, antibiotic therapy, and anti-fungal,
myelosuppression may negatively impact a patient's
anti-viral, and anti-pneumococcal prophylaxis. With
quality of life.
Kathy Lilleby, RN
thrombocytopenia, life-threatening hemorrhage may
Please define anemia, neutropenia, and
Fred Hutchinson Cancer Research Center occur when platelet levels drop below 50 x 109/L, so
thrombocytopenia.
Seattle, WA
management should include initiating institutional
Anemia is defined as abnormally low levels of red blood cells as measured
standards for thrombocytopenic precautions, mini-
by blood hemoglobin levels. Neutropenia is defined as abnormally low
mizing invasive procedures, and transfusing platelets prior to necessary
levels of neutrophils (granulocytes), and thrombocytopenia is defined as
invasive procedures or if there are signs of bleeding or bruising.
abnormally low levels of platelets (thrombocytes) in the circulating blood.
What else must patients and caregivers know?
Anemia can cause fatigue, thrombocytopenia can increase the risk of
Patients should familiarize themselves with the normal and critical values
bleeding, and neutropenia can increase the risk of infection.
of blood counts. Patients should discuss any change in prescribed medica-
How is myelosuppression assessed, monitored, and managed?
tions (such as increasing or decreasing doses or stopping a medication
All patients receiving novel therapies should have complete blood counts
earlier than prescribed) with medical personnel prior to making any
(CBC) monitored carefully. Monitoring of serum creatinine levels is also
changes. Neutropenic precautions include proper hand washing and
important because decreased renal function may result in more severe
good overall personal hygiene to reduce contact exposures, wearing of
anemia. If prolonged myelosuppression persists after dose modification
face mask under certain circumstances to reduce airborne infections, and
or withholding therapy, further evaluation is recommended to rule out
avoidance of crowds and potential contagion. Thrombocytopenic precau-
other possible causes, such as a reaction to other medications or progres-
tions include avoiding activities that can result in bruising or bleeding,
sive disease.
and avoiding using aspirin, ibuprofen, or naproxen unless otherwise
instructed (such as when prophylaxis is recommended for thromboem-
The severity of anemia, neutropenia, and thrombocytopenia can be
bolic events).
assessed using the National Cancer Institute (NCI) Common Terminology
Criteria for Adverse Events (CTCAE), which uses grades 1 through 5 to
It is important for members of the patient community to be educated on
identify treatment-related adverse events. These grades should be used
the basic concepts of myelosuppression. They should understand that
to monitor hematologic toxicities and to determine which management
anemia, neutropenia, and thrombocytopenia are manageable with the
strategies are needed.
careful monitoring of blood counts, dose adjustment where indicated,
prophylactic treatment and concomitant therapies as necessary, and
Standardized precautions and interventions related to low blood counts
patient and caregiver education.
mt
vary among institutions. Sometimes blood products are given for anemia
HOTLINE -- continued from previous page
In addition, not all patients with smoldering myeloma progress to active
should be administered, and a set of full skeletal X-rays should be done.
myeloma, and in those who do, progression may not occur for years. Not
Physicians should repeat the lab tests 2 to 3 months after diagnosis to
treating such patients spares them the side effects of treatment and pre-
rule out an early active form; if the results prove to be stable, the tests
vents the development of myeloma cells that are resistant to treatment. It
should be repeated every 4 to 6 months. Bone marrow biopsy should be
also means that by the time treatment might be needed, new and better
performed at diagnosis, and repeated only if there are signs of progression
treatment options are likely to be available.
to active myeloma (i.e. any change in the CRAB criteria or rising lab values
How often, and with what tests, should my doctor be following me?
on SPEP, UPEP, or Freelite test).
mt
Depending on where the protein was initially found urine or blood
Editor's Note: For more information, please call the IMF hotline at
the patient should be monitored with that corresponding test SPEP
800-452-CURE (2873).
or UPEP. In addition, baseline Freelite test, CBC, and Chemistry Panel
800-45-CURE(87)
17
Education & Awareness
spotLigHt on advocacy
2007 Myeloma Advocacy Summary
By Christine Murphy, MA
Congress returned to Washington with unfinished
and biologicals used in cancer chemotherapy regi-
legislative business in December and it is currently
mens if the uses are supported by citations that are
unclear which issues will be delayed until the New
included, or approved for inclusion, in specified
Year. Below is a summary of the major legislative issues
compendia. Three compendia were specified in
affecting myeloma patients during 2007.
the statute and unfortunately only one of the three
Cancer Research Funding
compendia is currently published. The statute did
Threatened
state that CMS "may revise the list of compendia...
as is appropriate for identifying medically accepted
On November 13th, the President vetoed the fiscal year
indications for drugs." Medicare beneficiaries battling
(FY ) 2008 Labor, Health and Human Services (LHHS)
cancer rely in significant part on these compendia
Appropriations bill. The FY 2008 LHHS Appropriations
listings for coverage of their oncology drugs. As a
bill included $30 billion ($1.1 billion or 3.8% increase
current and up-to-date list of compendia is criti-
over 2007) for the National Institutes of Health (NIH).
cal to ensure that myeloma patients have access to
The National Cancer Institute (NCI) received $4.9 bil-
the most appropriate treatments, the International
lion, an increase of $128 million. The President's FY
Myeloma Foundation has been working to persuade
2008 budget proposed a $278 million cut below the
CMS to name additional compendia for the Medicare
FY 2007 level for the NIH.
program.
ThePresident'svetooftheFY2008LHHSAppropriations
Christine K. Murphy, MA
CMS Issues Final Policy on ESAs
bill was sustained in the House of Representatives on
Murphy Consulting LLC
Arlington, VA
CMS released a final coverage policy for erythro-
November 15th by a vote of 277-141. A total of 288
poiesis stimulating agents (ESAs). According to the
votes were needed to override the veto (2/3 of the cur-
CMS determination, coverage of ESAs will be limited to anemia caused
rent membership in the House). It is unclear what the next steps will be
by myelosuppressive anticancer chemotherapy for solid tumors, multiple
for the FY 2008 LHHS Appropriations bill.
myeloma, lymphoma, and lymphocytic leukemia. ESA therapy may be
Currently, Congress is working with the White House on a deal to cut
started when the hemoglobin level is below 10 grams per deciliter, is
all spending in the appropriations bills by $11 billion. House LHHS
limited to those whose hemoglobin levels remain below 10 grams per
Appropriations Subcommittee Chairman David Obey (D-Michigan) stated
deciliter, and may be continued no longer than 8 weeks after the last
that future LHHS deals could eliminate all Congressional earmarks in an
chemotherapy sessions.
effort to move closer to the President's proposed budget. Based on past
Stem Cell Research Bill Vetoed
history, the FY 2008 LHHS Appropriations bill could be included as part
of a larger omnibus appropriations bill in mid-December (after this issue
The Senate approved the Stem Cell Research Enhancement Act, S. 5, by
of Myeloma Today goes to print).
a vote of 63 to 34 on April 11. All Democrats except Senator Bob Casey
(D-Pennsylvania) and Senator Ben Nelson (D-Nebraska) voted for S. 5
CMS Nixes Proposed Clinical Trials Policy
and 16 Republicans voted in support of the bill. The House passed (by a
Earlier this year, the Centers for Medicare and Medicaid Services (CMS)
vote of 253 to 174) its companion bill, H.R. 3, during its first "100 Hours."
proposed numerous changes to the coverage policy of clinical trials for
President Bush vetoed S. 5 on June 20.
Medicare beneficiaries. The proposed onerous and cumbersome changes
2008 Myeloma Advocacy Goals
would have prevented Medicare ben-
eficiaries with cancer from participating
With many legislative issues to be
in clinical trials. Due to a concentrated
finalized, the IMF is already planning
effort by the cancer community and
advocacy activities for 2008. IMF will
Congressional champions, CMS is mak-
continue to advocate for increased
ing no changes to the current policy
funding for cancer research at the NIH
regarding Medicare coverage for clinical
and NCI. In addition to campaigning
trials.
for higher cancer research allocations,
IMF will continue to advocate for
Additional Compendia
legislative issues that ensure myeloma
Needed for Medicare
patients continue to have access to
Section 1861(t)(2) of the Social Security
high quality cancer care. To learn
Act (in conjunction with sections 1832
more about IMF's legislative activities,
and 1861(s)(2)) requires Medicare to
please visit www.myeloma.org.
mt
cover "medically accepted" uses of drugs
18
www.myeloma.org
International Affiliates
imf HoLds educationaL meetings in europe and asia
France
This year, the IMF had available the 2007 editions of the Concise Review
On September 14, the fifth annual IMF Patient & Family Seminar was held
and the Patient Handbook, newly translated into Russian, and the publi-
in Paris. Morgane Yvon assisted the IMF in preparing for this seminar,
cations were distributed among physicians and members of the patient
which returned to the spectacular Maison de l'Amerique Latine venue
community. In addition, prior to the conference, Dr. Durie spent the day
for another year. Drs. Jean-Luc Harosseau, Phillipe Moreau, Jean-Paul
visiting a local hospital and providing case evaluations for 16 ambulatory
Fermand, Thierry Facon, and Bernard Grosbois were joined by the Dr.
and hospitalized myeloma patients. "Dr. Durie's invaluable input helped
Brian G.M. Durie, chairman of the IMF, in presenting a well-balanced
to resolve several critical cases," said Prof. Podoltseva. "We are grateful for
discussion of themes of special interest to the myeloma community. An
the continued support and the resources that the IMF has made available
interactive session enabled audience members to respond to queries
both to our patients and to the physicians treating them."
developed by Dr. Durie in conjunction with Dr. Harousseau. An elegant
Spain
location, fascinating speakers, and a wealth of new information about
On October 20, the fourth annual IMF Patient & Family Seminar in Spain
developments in myeloma treatment and supportive care all in all, this
took place in Barcelona. This was the second time that the IMF held a
was a valuable day for everyone attending.
seminar in Barcelona. Once again, the professional and convenient loca-
Italy
tion of the Novartis auditorium was the venue, with Drs. Joan Bladé and
The IMF partnered with the
Laura Rosińol of the Hospital Clinic as the co-chairs of the event. They
Associazione Italiana contro le
were assisted in presenting a very full agenda by Drs. Ramón Garcia-Sanz,
Leucemie-Linfomi e Mieloma
Albert Oriol, Anna Sureda, Juan José Lahuerta, and Maria Teresa Cibeira.
(AIL) to present the fifth annual
Representing the IMF were David Smith, Executive Director, and Gregor
IMF Patient & Family seminar in
Brozeit, Director of IMF Europe. David supplemented his IMF presentation
Italy. This year's meeting took
in Spanish with an introduction in Catalan which was quite well-received.
Drs. Antonio Palumbo, Mario
place on September 21 at the
Boccadoro, and Brian G.M. Durie
The program included eight presentations and a very useful interactive
Policlinico Federico II, high above the breathtaking bay of Naples. Prof.
session, which was prepared by Dr. Durie and translated by David Smith.
Mario Boccadoro was instrumental in bringing the IMF Patient & Family
Coffee breaks and a luncheon were provided by Novartis for the more than
Seminar program to Italy. He held the first seminar in 2003 in Turin, his
100 attendees. Most of the attendees were from Barcelona and the prov-
hometown, and hosted it again the following year. Since then, the IMF
ince of Catalonia, but the province of Valencia was also well-represented.
has had the pleasure of working with other prominent myeloma doc-
Germany
tors in Italy who have hosted seminars throughout the country. In 2005,
Fall was a busy
Dr. Maria Teresa Petrucci organized the event in Rome, and Drs. Patrizia
time for the IMF in
Tosi and Michele Cavo held the program in Bologna the following year.
Germany. Dr. Robert
Approximately 135 attendees gathered at the Naples seminar, listening
Kyle (chairman of
to presentations and participating in the question and answer sessions
the IMF Scientific
with the faculty panel, which included Drs. Durie and Boccadoro, as well
Advisory Board) par-
as Drs. Antonio Palumbo, Felicetto Ferrara, Lucio Catalano, and Michele
ticipated in five edu-
Cavo. In true Italian style, a delicious buffet lunch was set out in the lobby
cational meetings for
Left to right: Ulrich Wolter, Angelika Horstkorte,
of the "aula magna," or auditorium, providing an excellent setting for
the myeloma patient
Heinz Horstkorte, Dr.Robert Kyle, Gregor Brozeit,
patients to mingle with each other, with the doctors, and with the IMF
community and for
Dr. Peter Liebisch, and Dr. Rolf Pelzing
and AIL staffs. Bravo tutti!
local clinicians as he visited Hamburg, Nürnberg, Würzburg, Nordrhein-
Russia
Westfalen, and Berlin. Also, the IMF sponsored the participation of Dr.
David Vesole (St. Vincent's Hospital, New York City) to speak before two
On September 26, the IMF
groups of German doctors at the annual University of Heidelberg Multiple
held its third clinical con-
Myeloma Days and to participated in the October meeting of the German-
ference in St. Petersburg.
speaking Myeloma-Multicenter Cooperative Group.
Doctors from across Russia
attended the meeting,
China
which aimed to educate
The inaugural IMF-
Dr. Durie and Prof. Podoltseva (center)
local doctors about the
China
Myeloma
during patient consultation
modern myeloma treatment
S y m p o s i u m
algorithm, planning for treatment with or without transplant, and future
-- Advances in
perspectives in therapies. Dr. Durie was the featured speaker. "The lec-
Diagnosis
and
tures presented by the IMF are always eagerly anticipated by doctors from
Treatment -- was
Russia," said Prof. Eleonora I. Podoltseva, who organized the event. "Dr.
held on October
Drs. Wen-Ming Chen, Sundar Jagganath,
Durie has been a presenter at every IMF conference held in St. Petersburg,
20 in Beijing. Dr.
Mario Boccadoro, Brian Durie, Xiao-Jun Huang,
and doctors travel great distances from Central Russia, Southern Russia,
and Jian Hou
Durie chaired the
and as far as from Siberia and the Far East to hear him speak."
Continues on Page 21
800-45-CURE(87)
1
Member Events
imfers raise funds to Benefit myeLoma community
By Suzanne Battaglia
On September 15, myeloma patient Richard Davies organized a
burgundy and white, repre-
fundraising hike to Pike's Peak in Colorado. Six hours, 6.8 miles and 3700
senting myeloma, the IMF, and
feet later, the group arrived at Barr Camp. "My pack weighed 23 pounds
the RIMMSG. Banners adorned
my shoulder blades were killing me and I could hardly walk by the
the walls and balloons floated
time we arrived at Barr
above the crowd. Dinner and
Camp," said Richard,
dancing gave way to silent auc-
"But the scenery was
tion bidding and a raffle draw-
glorious. There wasn't a
ing, with many prizes donated
cloud in the sky, which
by IMF and RIMMSG support-
Barbara Morse-Silva presents award
was the richest blue
ers. Barbara Morse-Silva, NBC
to Carol Murray-Rossi
that I've never seen any-
Channel 10 Anchor and Health Reporter, served as the RIMMSG celeb-
where but in Colorado."
rity hostess for the evening. Her station had donated public awareness
During the evening,
spots which aired 30 times for a total value of $18,000! The spots
Richard's group grew to
helped increase public awareness of myeloma, the RIMMSG and the IMF,
nine people, as more
and the "Money for Miracles" fundraiser. On the evening of the event,
friends arrived at the Richard Davies and supporters reach the summit
Barbara Morse-Silva presented the IMF Outstanding Achievement Award
camp to join the hike,
to RIMMSG leader Carol Murray-Rossi. Dana Paskalis of the Celgene
including some supporters from the Rocky Mountain Cancer Center
Corporation was also acknowledged for her support of RIMMSG activities
where Richard receives treatment. Setting out early the next morning,
and for making her extensive knowledge of myeloma regularly available to
all nine hikers reached the summit five hours later. There was a shared
group members. Celgene also supported the "Money for Miracles" fund-
sense of accomplishment among the hikers, and the knowledge that their
raiser with a special grant. "In addition to Celgene, the RIMMSG event was
efforts contributed to funding myeloma research only heightened their
generously sponsored by Paul Audette of Helping Hand Associates Inc.
experience.
and Mr. Dan Lantz of Eloquence Jewelers," said Carol Murray-Rossi. "And
the IMF staff worked right along with us, planning and organizing. Thanks
On October 7, Ken Fabian organized a plant sale to benefit the IMF
to this guidance, we've learned so much about how to raise funds in order
and his local myeloma community in Florida. The rainy weather notwith-
to better help our community. The IMF has been our guiding light and
standing, the event was a big success. "I have been involved in the plant
beacon of hope. We are here, in part, as a result of the tremendous effort,
business for
knowledge and compassion offered to us by the IMF. We also must thank
35 years, so
our families and friends, and the local community, for their support of our
having
this
group and of the myeloma community at large."
type of fund-
raiser came
On October 28, Eric Merkel
easy.
Many
ran the Marine Corps Marathon
local nurser-
in Washington, DC. Eric dedi-
ies donated
cated his run to his aunt, Linda
plants for the
Rohrbaugh, who was diagnosed
Ken Fabian and Andy Lebkuecher at the plant sale
f u n d r a i s e r,
with aggressive myeloma in April
including Spring Hill Nursery, Peckett's Inc., Bruce Jensen Nurseries, G&T
2006. "She has been through a
Foliage, Krull and Smith, Foliage Factory Too, Southland Gardens Nursery,
number of treatments, including
and Lake Brantley Plant Corporation. Other businesses gave a hand, too,"
a transplant, and several clinical
said Ken. "My thanks also go to IMF's Andy Lebkuecher, who came to the
trials. I have seen her be very ill
plant sale on Sunday and spoke to our support group on Monday." Ken,
and very brave," said Eric, "So
who was diagnosed with myeloma in March 2006, is the founder of the
although I quit doing marathons Eric Merkel with parents Barbara and
myeloma support group in Maitland, FL. "I guess I've officially become an
after my eighth run a couple of
John, and sister Becky
activist for the myeloma community! The experience of making friends
years ago, I decided to come
with other myeloma patients, sharing our hope and our strength, has
out of `retirement' for my ninth marathon, in honor of my aunt and in
changed my life a great deal. I cherish each day and try to live it to the
hopes of raising funds for the IMF's myeloma research program. Without
fullest. Life is great!"
cutting-edge research and experimental trials, Linda and other myeloma
patients like her would not be here today. That's how important research
On October 27, the second annual "Money for Miracles" event
is!" Many of Eric's friends, colleagues, and family members responded to
took place in Warwick, RI. The evening of dinner, dancing, auctions,
his letters of appeal, and most turned out to see him run the marathon,
and raffles was thoroughly enjoyed by the more that 250 people who
which he completed in 3 hours and 56 minutes. "This is by far one of the
attended the event. The Rhode Island Multiple Myeloma Support Group
best experiences I've had running a marathon. I was overwhelmed by
(RIMMSG) organized the event to benefit the group, the IMF, and the
people's support and generosity. And the knowledge that I was running
Cathy Lebkuecher Memorial Fund. The elegant event color scheme was
Continues on next Page
0
www.myeloma.org
Support Groups
tennessee: tri-cities
Harvey Jessee was diag-
The Tri-Cities Area Multiple
nosed with smoldering
Myeloma Support Group held its
multiple myeloma in May 2007.
first meeting in September 2007,
His wife, Darlene, immediately
with 14 people in attendance.
took action. She got in touch
Twenty people participated in the
with the IMF and requested all
group's October meeting, and the
the printed educational mate-
ranks grew to 25 by the follow-
rials that the Foundation pro-
ing month. In November 2007,
vides. "That InfoPack contained
the group welcomed IMF's Robin
the most informative materials
Tuohy (Regional Director, Support
we've received. The service that
Groups, Northeast) as their guest.
the IMF provides is absolutely
"I attended the November meet-
wonderful," says Darlene. "And Harvey and I just knew that we had to pass
ing to introduce myself and the IMF to the group's members, to answer
this on to others. We understood how helpful it would be to have a local
their questions, and to distribute more of the Foundation's educational
support network, people to talk to face to face." At that time, the nearest
materials about myeloma," said Robin. "I was very impressed. Darlene
support group was a five-hour drive away.
and Harvey are doing a wonderful job, and the group's co-leader Ellen
Barrett is working with them on a variety of projects, including newslet-
Harvey and Darlene decided to start a support group in East Tennessee.
ters and other technical support of group operations. The group has
With the help of IMF's Kelly Cox (Director of Support Groups Outreach)
made such great strides in a very short amount of time because the
and Andy Lebkuecher (Regional Director, Support Groups, Southeast),
members truly care about helping each other and the other families in the
Darlene and Harvey began planning for the group's first meeting. They
area who are coping with myeloma. I think this group has tremendous
distributed information among the local medical community and posted a
potential!"
notice online on the myeloma list-serve. Darlene also arranged for public-
mt
ity with local newspapers and a television station. Soon another myeloma
Editor's Note: This group meets the first Saturday of every month from
patient, Ellen Barrett, joined their effort.
11am to 1pm. For more information please contact Darlene Jessee at
pennywort6@embarqmail.com or 423-538-6923 .
INTERNATIONAL -- continued from page 19
meeting, with Drs. Mario Boccadoro and Sundar Jagannath joining him
"The inaugural China Myeloma Symposium was an auspitious event,"
as faculty. Also participating as faculty were Dr. Wen-Ming Chen (Director
noted IMF president Susie Novis. "Since 1993, the IMF has held many
of the Multiple Myeloma Research Center of Beijing), Dr. Jian Hou
international conferences and symposiums to form collaborations with
(Professor and Director of the Department of Hematology for Changzheng
clinicians and researchers, and we will continue to collaborate with doc-
Hospital of Shanghai), and Dr. Xiao-Jun Huang (Chairman of the
tors throughout the world in helping patients and in working together to
Chinese Hematological Medical Association, Director of the Hematology
find a cure for myeloma. As the IMF concludes another year of its activi-
Department in Beijing People`s Hospital).
ties around the world, we once again note that the concerns of both the
patient and the medical communities center on the same issues: scientific
The day`s presentations covered biology, etiology, epidemiology, diagno-
progress, treatment choices, side effects, and quality of life. To continue to
sis, prognosis, staging, and treatment of myeloma, as well as genomics and
answer these questions, the IMF is commited to bringing its seminar and
proteomics, biomarkers, and clinical applications for new technologies.
conference programs to as many doctors and patients as possible, regard-
Talks took participants from the old myeloma treatment paradigm through
less of where they might live. "
to defining the future directions for therapies. The day of intensive ses-
mt
sions ended with a faculty panel discussion about improving therapeutic
outcomes for today's patients, as well as the potential for collaborations
with Chinese investigators.
MEMBER EVENTS -- continued from previous page
for a cause so close to my heart, made this one of the most emotional and
working with you to continue to raise awareness and funding for myeloma
exhilarating experiences I've ever had."
education and research. Join us in working together toward our common
Join Us
goal... a CURE. Our FUNdraising program provides you with the tools,
assistance, and expertise to make your event a success. No idea is too
We are grateful to all IMFers who contribute their time, imagination, and
large or too small. Please contact me, Suzanne Battaglia, at sbattaglia@
hard work to benefit the myeloma community. The IMF is committed to
myeloma.org or 800-452-CURE (2873). mt
800-45-CURE(87)
1
FreeliteTM Serum Free Light Chain Assays
Aid in the Diagnosis and Monitoring of
Multiple Myeloma
·
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for monoclonal gammopathies by using serum immunofixation and
free light chain assays."
No more 24 hour urine collections.
·
"Changes in serum free immunoglobulin light chains (FLC)
are a more rapid indicator of treatment response than intact
immunoglobulins due to their shorter half-life."2
The Binding Site Inc.
An additional aid in monitoring treatment.
1-800-633-4484
Katzmann, J.A., et al. Mayo Clinic Proc. 2006;8(12):1575-78
www.freelite.co.uk
2 Pratt, G. et al. Leukemia and Lymphoma. 2006;47(1):21-28
FreeliteTM is a trademark of The Binding Site Ltd, Birmingham, UK.
2008 IMF Calendar of Events
Jan 12
IMF Regional Community Workshop Seat le, WA
May 30 June 3 American Society of Clinical Oncology (ASCO) meeting Chicago, IL
Jan 24 27
IMF Board Retreat Dana Point, CA
June 12 15
European Hematology Association (EHA) meeting Copenhagen, DENMARK
Feb 6
Robert A. Kyle Lifetime Achievement Award Torino, ITALY
June 27 28
IMF Patient & Family Seminar Seat le, WA
Feb 10 11
SWOG Retreat Phoenix, AZ
June 27 29
Eastern Cooperative Oncology Group (ECOG) meeting Boston, MA
Mar 14 15
IMF Patient & Family Seminar Atlanta, GA
July 25 26
IMF Patient & Family Seminar Boston, MA
Apr 11 13
IMF Support Group Leaders Retreat Tempe, AZ
Aug 22 23
IMF Patient & Family Seminar San Diego, CA
Apr 17 19
IMF Scientific Advisory Board Retreat Bermuda, USVI
Oct 29 Nov 2 Southwest Oncology Group (SWOG) meeting Chicago, IL
Apr 30 May 4
Southwest Oncology Group (SWOG) meeting Atlanta, GA
Nov 14 16
Eastern Cooperative Oncology Group (ECOG) meeting Ft. Lauderdale, FL
May 15 18
Oncology Nursing Society (ONS) Philadelphia, PA
Dec 6 9
American Society of Hematology (ASH) meeting San Francisco, CA
Other events/meetings wil be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or cal 800-452-CURE (2873).
IMFLatin America, IMFJapan and IMFIsrael events are not included above.
Imagine Moving Forward
is the theme of the IMF's myeloma
bracelet. Wear one in honor, cel-
ebration, or in memory of a loved
one. When people ask you about
it, you'll have a perfect oppor-
tunity to spread the word about
multiple myeloma. These brace-
lets are only $1 each in sets of 10.
Youth bracelets are now available,
so everybody in your family who
has been touched by myeloma can
wear one! Order bracelets online
at our website www.myeloma.
org, or contact Suzanne Battaglia
at SBattaglia@myeloma.org or
800-452-CURE (2873).
International Myeloma Foundation
NON-PROFIT
12650 Riverside Drive, Suite 206
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
U.S.A.
www.myeloma.org
PAID
N. Hollywood, CA
Foundation
(800) 452-CURE (2873)
PERMIT NO. 665
Change Service Requested
yelomaM
International
©2008,
U.S.A.in
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Printed