Myeloma
Today SUMMER2008
Volume 7 Number 7
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Scientific & Clinical News
Profiles in the News
Dr. Brian Durie, IMF Chairman and Scientific Advisor
Loraine Boyle, a member of the IMF Board of Directors and
and multiple myeloma specialist at the Cedars-Sinai
wife of the actor Peter Boyle, has been involved with com-
Comprehensive Cancer Center in Los Angeles, reports on
munity organizations and fundraising efforts for many years.
the 2008 IMF Scientific Advisory Board Retreat with
After Peter's battle with myeloma, Loraine has remained
an overview of the meeting agenda, a discussion pertain-
proactive in helping to put an end to this disease. Through
ing to response criteria, and a recap of ongoing activities
the Peter Boyle Memorial Fund, she has chaired a new annual
within the IMF Bank On A Cure® research project, as wel
event for the IMF, an evening of comedy to raise funds to support research and
to raise public awareness of myeloma. PAGE 4
as other initiatives. Dr. Durie also addresses the recent
FDA approval of bortezomib (VeLCADe®) for frontline treatment of newly
Dr. Sagar Lonial, a new member of the IMF Scientific
diagnosed myeloma patients. PAGES 7
Advisory Board, became interested in the field of myeloma
about five years ago. He splits his time between a clinical
Dr. S. Vincent Rajkumar, IMF Scientific Advisor and
practice, laboratory work, and writing or reviewing clinical
Professor of Medicine at Mayo Clinic, talks with Myeloma
trials at the Winship Cancer Institute of emory University
Today about significant myeloma-related presentations
in Atlanta, GA. In an introductory interview with Myeloma
made at the 44th annual meeting of the American Society
Today, Dr. Lonial shares his excitement about the new science that is broad-
of Clinical Oncolog y, including his findings from the
ening the scope of available treatment for myeloma and improving patient
Phase III eastern Cooperative Oncology Group frontline
outcome. PAGE 5
trial of lenalidomide (Revlimid®) and other highlights. Dr.
Joanna FitzPatrick talks about joining the ranks of "e-patients"
Rajkumar also offers his opinion on complete response
as a result of her husband's myeloma diagnosis. Like many
and very good partial response as appropriate end points and predictors of
others, she turned to the Internet to access valuable informa-
eventual overall survival. PAGE 10
tion, enhance her education about the disease, and seek emo-
tional support from others coping with myeloma. Through
Prof. Dr. Hermann Einsele, IMF Scientific Advisor and
the myeloma listserv, Joanna has found hope and a compas-
chairman of the German Multiple Myeloma Study
sionate and knowledgeable community of patients and caregivers, united in
Group, discusses the group's current research activities,
the fight against myeloma and determined to find its cure. PAGE 19
the work of his team at the Würzburg University Hospital,
Supportive Care
and the state of available myeloma treatments in Germany
in frontline and relapsed/refractory disease, both within
IMF Hotline Coordinators, who answer your questions and emails to help you
and outside the clinical trial setting. He also comments
address the various aspects of myeloma in a more informed way, respond to an
on the strong relationship that has been established in
inquiry about maintenance therapy following a stem cell transplant. PAGE 14
Germany between the medical and the patient communities. PAGE 9
Page Bertolotti, RN, BSN, OCN, talks with Myeloma Today
Special Event
about gastrointestinal side effects associated with anti-
myeloma therapies. These side effects constipation,
The 2008 IMF Support Group Leaders' Retreat is recapped
diarrhea, nausea, and vomiting are some of the most man-
by myeloma patient Paula Van Riper, leader of the Central
ageable side effects of cancer therapy, and may be treated
New Jersey Myeloma Support Group. The ninth annual
with appropriate medical interventions, thereby minimizing
retreat, which had 70 leaders and 125 participants in
their impact on the patient's quality of life and adherence to therapy. PAGE 13
attendance, provided training and leadership for the
Also in this issue...
representatives of the myeloma patient and caregiver com-
munities from across the US, Canada, and europe. Paula
Dear Reader by IMF president
International News PAGE 18
summarizes the event agenda and spotlights the three new technology-based
Susie Novis PAGE 3
Member Events raise funds to benefit
IMF initiatives introduced at the retreat.. PAGE 16
Letters to the IMF PAGE 3
the myeloma community PAGE 20
News & Notes PAGE 6
Support Group in Southeastern Virginia
Nurse Leadership Board
Looking for a LocaL myeLoma support group?
goes hi-tech PAGE 17
activities update PAGE 12
If you are interested in joining a support group, please visit our website
Staff Updates PAGE 22
Spotlight on Advocacy
at www.myeloma.org or call the IMF at 800-452-CURE (2873).
issues in 2008 PAGE 15
Calendar of Events BACK COVER
This issue of Myeloma Today is supported by Celgene Corporation, Millennium Pharmaceuticals, and Ortho Biotech.
International Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Benson Klein
Dr. Edith Mitchell
Charles Newman
E. Michael D. Scott
Loraine Boyle
Dr. Robert A. Kyle
Dr. Gregory R. Mundy
Susie Novis
R. Michael Shaw
Mark Di Cicilia
Isabelle Lousada
Matthew Robinson
Igor Sill
Michael S. Katz
Allan Weinstein
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Y.C. Chen, REPUBLIC OF CHINA
Tadamitsu Kishimoto, JAPAN
Ian MacLennan, ENGLAND
Ian Franklin, SCOTLAND
James S. Malpas, ENGLAND
Scientific Advisors
Raymond Alexanian, USA
Gösta Gahrton, SWEDEN
Martin M. Oken, USA
Kenneth C. Anderson, USA
Morie A. Gertz, USA
Antonio Palumbo, ITALY
Michel Attal, FRANCE
John Gibson, AUSTRALIA
Linda Pilarski, CANADA
Hervé Avet-Loiseau, FRANCE
Hartmut Goldschmidt, GERMANY
Raymond Powles, ENGLAND
Dalsu Baris, USA
Roman Hajek, CzECH REPUBLIC
S. Vincent Rajkumar, USA
Bart Barlogie, USA
Jean-Luc Harousseau, FRANCE
Donna Reece, CANADA
Régis Bataille, FRANCE
Joyce Ho, AUSTRALIA
Paul Richardson, USA
Meral Beksac, TURKEY
Vania Hungria, BRAzIL
Angelina Rodríguez Morales, VENEzUELA
William Bensinger, USA
Mohamad Hussein, USA
David Roodman, USA
James R. Berenson, USA
Sundar Jagannath, USA
Jesús San Miguel, SPAIN
Leif Bergsagel, USA
Douglas Joshua, AUSTRALIA
Orhan Sezer, GERMANY
Joan Bladé, SPAIN
Michio M. Kawano, JAPAN
Kazayuki Shimizu, JAPAN
Mario Boccadoro, ITALY
Henk M. Lokhorst, THE NETHERLANDS
Chaim Shustik, CANADA
J. Anthony Child, ENGLAND
Sagar Lonial, USA
David Siegel, USA
Raymond L. Comenzo, USA
Heinz Ludwig, AUSTRIA
Seema Singhal, USA
John Crowley, USA
Jayesh Mehta, USA
Alan Solomon, USA
Franco Dammacco, ITALY
Håkan Mellstedt, SWEDEN
Pieter Sonneveld, THE NETHERLANDS
Faith Davies, ENGLAND
Giampaolo Merlini, ITALY
Andrew Spencer, AUSTRALIA
Meletios A. Dimopoulos, GREECE
Gareth Morgan, ENGLAND
A. Keith Stewart, USA
Johannes Drach, AUSTRIA
Gregory R. Mundy, USA
Guido J. Tricot, USA
Brian G.M. Durie, USA
Nikhil Munshi, USA
Benjamin Van Camp, BELGIUM
Hermann Einsele, GERMANY
Amara Nouel, VENEzUELA
Brian Van Ness, USA
Dorotea Fantl, ARGENTINA
David Vesole, USA
Rafael Fonseca, USA
Jan Westin, SWEDEN
Headquarters
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607-3421 U.S.A.
Tel: 818-487-7455 or 800-452-CURE (2873)
Fax: 818-487-7454 E-mail: TheIMF@myeloma.org Website: www.myeloma.org
IMF Staff
Executive Director
Senior Vice President, Strategic Planning
Vice President, Development
David Girard (dgirard@myeloma.org)
Diane Moran (dmoran@myeloma.org)
Heather Cooper Ortner (hortner@myeloma.org)
Administrative Assistant
Director, Support Groups Outreach
Development Associate
Betty Arevalo
Kelly Cox (kcox@myeloma.org)
Randi Liberman (rliberman@myeloma.org)
Special Outreach Coordinator
Hotline Coordinator
Data Specialist
Arin Assero (aassero@myeloma.org)
Paul Hewitt (phewitt@myeloma.org)
Colleen McGonigle (cmcgonigle@myeloma.org)
Director of Member Events
Meeting & Event Services
Publication Design
Suzanne Battaglia (sbattaglia@myeloma.org)
Spencer Howard (showard@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Hotline Coordinator
Publications Editor
Director, Medical Meetings & CME Programs
Nancy Baxter (nbaxter@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
Lisa Paik (lpaik@myeloma.org)
Hotline Coordinator
Hotline Associate
Webmaster
Debbie Birns (dbirns@myeloma.org)
Missy Klepetar (mklepetar@myeloma.org)
Abbie Rich (arich@myeloma.org)
Director, IMF Europe
Regional Director, Support Groups Southeast
Comptroller
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Andrew Lebkuecher (imfsupport@charter.net)
Jennifer Scarne (jscarne@myeloma.org)
Administrative Assistant
Specialty Member Services Coordinator
Regional Director, Support Groups Northeast
Rachael Coffey (rcoffey@myeloma.org)
Kemo Lee (klee@myeloma.org)
Robin Tuohy (tuohy@snet.net)
2
www.myeloma.org
Inter
P
nationallaceholder
Myeloma Foundation
Dear Reader,
By now, many of you are aware that the IMF formed a Nurse Leadership
Leadership Board, recently published in the
Board (comprised of 19 nurses from institutions around the country),
Clinical Journal of Oncology Nursing. These
and have been following the many achievements of this Board. The IMF
guidelines cover the most common side
is very proud of the NLB, their dedication, and their determination to
effects often associated with novel therapies.
establish an entity that would improve the lives of myeloma patients and
the care they receive. Nurses ensure optimal care as they are the crucial
They include: myelosuppression, throm-
link between the patient and the doctor.
boembolic events, peripheral neuropathy,
gastrointestinal side effects, and steroid-
You read that they had an abstract accepted at the International Myeloma
associated side effects.
Workshop that took place in Kos, Greece last summer an unprecedented
accomplishment for nurses. Many of you have had the pleasure of meet-
Next project for the NLB is the Long-Term
ing members of the NLB as they have participated at our Patient & Family
Care Taskforce, which you'll read about in this issue in the interview with
Seminars and know first hand how they are helping to re-shape the way
elizabeth Bilotti, who is the taskforce leader on the project. She is an MSN
patients are cared for across America.
at St. Vincent's Comprehensive Cancer Center in New York.
In the age of novel therapies, it became clear that nurses who care for
Our goal is to ensure that every nurse has a copy of the Guidelines, and
patients needed guidelines on how to manage the side effects often
I encourage you to contact the IMF for a free copy of this important paper
associated with these new drugs. As wonderful as they are and they
and take it to your nurse on your next visit.
are they also come with some challenges. The good news is that the
We're extremely proud of the NLB and are very grateful to them for all
challenges patients experience side effects can be properly managed
their hard work and dedication to helping patients.
to allow patients to achieve the maximum benefit of these novel drugs,
putting them into good long-term remissions and getting their day-to-day
As always, if you have any thoughts or suggestions you'd like to share,
lives back on track.
please don't hesitate to contact me.
The abstract was just the beginning of what would become Managing the
Warm regards,
Side effects of Novel Agents for Multiple Myeloma: Guidelines and Patient
education Sheets from the International Myeloma Foundation Nurse
Susie Novis
Letters to the IMF
The Hotline
The IMF
Thanks for your thoughtful response to my inquiry about maintenance. It
I don't think that I am alone in saying that I had never even heard of
must be stated that your organization is a godsend to me. My information
multiple myeloma before I was diagnosed, so the first thing I did was
needs sometimes present themselves so suddenly that there is not suf-
research what I had. The old dire statistics and web references were a
ficient time to research them effectively and that is where you come in. I
somber slap that I was in deep trouble. Dark beginnings to a lonely and
try to plan and anticipate my information needs but even that sometimes
hopeless journey? My doctor told me at my first visit, almost nine years
fails me. Thanks for being able to answer questions.
ago, "Don't think of this as a death sentence. Get all the information you
Ellen Barrett
would like, but know that information is from statistics. It is not about
you. You are not a statistic. If you want to know about you, you talk
I guess one really needs to be one's own advocate if at all possible. The
to me." Those golden words were full of hope. So I began to look for
IMF has, and continues to be, a great source of information and support
information, not statistics. And I found the IMF. The IMF opens doors
for me. There truly are no words to say how much it continues to mean
to hope. The IMF is where one could turn for support, communication
to me, knowing that you folks are there. It is a true blessing and a gift
with peers, an online list serve, Patient & Family Seminars, medical and
beyond measure.
Ann Milstead
clinical trial information, an opportunity to add to research (especially
Bank on a Cure®), and just the empowerment of knowing one is not
Seattle IMF Patient & Family Seminar
alone. No doom, no gloom, but real current information, support, and
I want to send my compliments for your well-organized recent meeting in
fellowship. Real people, not statistics. A light in the darkness! I was
Seattle. Dr. Durie was great as Chairman of the program and his sense of
changed from a "myeloma victim" mindset to an individual with a life to
humor was appreciated. Dr. Vescio was very patient with our questions in
live who also has myeloma. I became full of the knowledge that I'm not
the breakout sessions, and we appreciated his courtesy. The hotel facilities
the first to experience this journey, and I'm not the last, but surely, I'm
were perfect. Best wishes for continued success.
not alone. Thank you for opening the "doors to hope."
Joseph & Jean Buhaly
Hal Gleason
Please note that David Smith, IMF executive Director, has legally changed his name to David Girard. Years of confusion with so many others
of the same name have made this change necessary. David's new email address is dgirard@myeloma.org. If you have any questions, please call him
at the IMF.
800-452-CURE (2873)
3
Board of Directors
MyeloMa Today in conversation with Loraine BoyLe
Please tell a little about your professional
Through Brian, Peter and I were introduced to Susie
background.
Novis and the IMF. I fully participated in Peter's care
My background is in journalism, as a writer and edi-
and found the IMF publications to be very educational.
tor. I wrote mainly about music and personalities for
Through the IMF, we also learned about several long-
Rolling Stone, the New York Times, the Detroit Free
term myeloma survivors, and this helped us to remain
Press, and other publications.
hopeful. We never lost hope.
How did you meet your husband, the actor Peter
Did you have a strong support network?
Boyle?
Yes, we had an extensive network of family and friends
In 1974, I was living in New York, but I went out to
who supported us throughout this time. And Susie and
Los Angeles to work on a story about Mel Brooks, who
I became good friends so, in essence, she became my
was in the middle of filming Young Frankenstein. Peter
myeloma support group. She had already experienced
starred in that film, and we met on the set. We were
everything I was experiencing, and I could call her at
married in 1977.
any time. Professionally, however, we chose to keep
Peter's diagnosis quiet. In show business, if you want
Did you continue to work in your profession?
to continue to work, it's not good to advertise your
Loraine Boyle
Yes, until we started our family. After Lucy and Amy
illnesses. Because Peter suffered his heart attack in
were born, I concentrated on being a wife and mother. Once the children
his Everybody Loves Raymond dressing room, his heart disease was not a
started school, I became involved in several New York City community
secret, but we never mentioned the word "cancer."
organizations. I volunteered for the Carl Schurz Park Association, the
But he continued to work.
Chapin School Parents Association, and the Asphalt Green athletic facility.
My volunteerism was focused on areas that involved my children and my
Peter continued to work after Everybody Loves Raymond went off the
community. I was active in fundraising for the school our girls attended,
air, until approximately six months before he passed away in December,
and I ran a book fair and other such projects. When Lucy and Amy
2006. He was 71.
attended Brown University, I was a member of the Parents' Leadership
Please tell us about the 2007 IMF Gala Celebrating Peter Boyle, an
Committee.
evening of comedy with family & friends which benefited the IMF
How did you balance family life with the demands of Peter's
research program.
career?
Many of the people we met in the course of Peter's career are helping
For the nine years that Peter worked on Everybody Loves Raymond, he
keep his memory alive. Amy, Lucy, and I are so grateful that our family
would be in California from August to March, and every third week he
has friends like Ray Romano, Stu Smiley, Tom Caltabiano, and Robert
would return to New York for one week. For the children's school vaca-
Morton who put together a great comedy show to benefit the Peter Boyle
tions, we would fly to Los Angeles.
Memorial Fund at the IMF. The evening was hosted by Ray and featured
Patricia Heaton, Doris Roberts, Fred Willard, Jeff Garlin, Richard Lewis,
When was Peter diagnosed with multiple myeloma?
and Martin Short. This has now become an annual event for the IMF, and
In 1990, Peter had a stroke, and in 1999, he had a heart attack. In early
Ray Romano has already agreed to headline our next evening of comedy,
2003, Peter started to experience breathlessness. We assumed this was
which is scheduled to take place at Wilshire ebell Theatre in Los Angeles
due to heart problems, but the cardiologist sent us to a hematologist. The
on November 15, 2008.
diagnosis was myeloma, a disease we had never heard of.
After Peter's passing, why did you choose to become more
How did the family cope with the diagnosis?
involved with the IMF and accept the invitation to join its Board of
We were told that myeloma is incurable but treatable. I tend to be a very
Directors?
optimistic person, so that's what I focused on. We had a lot of hope.
Like Susie, who lost Brian Novis to myeloma, I feel the need to be proac-
Without hope, I don't know how we would have gotten though the day.
tive and do all I can to put an end to this disease. And I want to give back
to the myeloma community everything that Brian and Susie did for my
Peter was put on an aggressive high-dose regimen and, shortly thereafter,
family during Peter's four-year battle with the disease. We have to find a
landed in the emergency room. We were fortunate that we were about
cure for this disease, and we must come to a better understanding of what
to return to the West Coast; we were referred to Dr. Brian Durie in Los
causes myeloma and how to prevent it. Could it be genetic? Are my chil-
Angeles. Brian, in turn, recommended Dr. Joseph Ruggierio to take care
dren at risk? If, as some researchers suggest, it's environmental factors that
of Peter when we were in New York. Brian also adjusted Peter's medica-
trigger myeloma, then we are all potentially at risk. So is there something
tion and, for a while, this seemed to work. Then Peter was put on other
we can do about our exposure to toxins and pollutants? The research
therapies, but his pre-existing heart disease limited the range of myeloma
funded by the IMF aims to answer these questions. I am not a scientist or
treatment options. The balancing act of medications seemed more like an
an educator, but I can work on behalf of the IMF to raise funds to support
art than a science.
research efforts and to raise public awareness of myeloma. mt
4
www.myeloma.org
Scientific Advisory Board
MyeloMa Today in conversation with Dr. sagar LoniaL
Please tell us a little about your background.
the body to target a specific protein on the surface
My interest in medicine started back in high school,
of a given cell. In myeloma, if a large number of
when I wrote a paper on oncogenes and decided that
monoclonal antibodies are created outside the
I wanted to work in cancer research. I went to John
body, they can then be given back to patients as
Hopkins for college, where I worked in the leukemia
a treatment. Once the antibody is hooked onto
laboratory. From then on, I was focused on hematolog-
a protein on the surface of a plasma cell, the
ic malignancies. I did my internal medicine residency at
immune system kills that cell.
the Baylor College of Medicine in Houston, TX. I spent
How do you divide your time between your
an additional year as a Chief Medical Resident at the
various responsibilities?
Ben Taub General Hospital, as well as the Texas Heart
Institute and St Luke's Hospital. I completed my hema-
Our center sees between 250 and 300 new myelo-
tology/oncology training at emory University. I have
ma patients each year. I split my time between
worked in the field of immunotherapy and cancer since
my clinical practice, our laboratory, and writing
my arrival at emory. I am now an Associate Professor
or reviewing clinical trials at our center and for
at the Winship Cancer Institute of emory University,
multi-center studies.
Director of Translational Research, B-cell malignancy
What is your relationship with the IMF?
program, as well as Associate Director of Hematology-
The IMF is a great place for patient information
Oncology Fellowship Program. I work both on the
and education, and an excellent forum through
transplant service as well as in the B-cell malignancy
Sagar Lonial, MD
which available treatments become known to the
clinic. Most recently, I have focused on combinations
Winship Cancer Institute
patient community. The IMF has also played an
of novel agents as therapy for myeloma and lymphoma,
of Emory University
important role in helping clinicians to evaluate
particularly evaluating combinations that may result in
Atlanta, GA
and develop diagnostic and treatment guidelines.
synergistic inhibition of the PI3-K/Akt pathway.
Within the last year, I was invited to join the IMF Scientific Advisory Board.
How did you become interested in the field of myeloma?
It is an amazing group to be a part of. So far, I have participated in several
I was drawn into the field about five years ago. I found the new science
meetings aimed at creating guidelines, and I am honored to work with
exciting, and the possibility of being able to change the available treatment
myeloma experts who have contributed to such dramatic changes in the
for myeloma patients very intriguing. This is an incredibly interesting time
care of patients. Now we are working on identifying subsets of patients
in the field of myeloma the science and the biology of what we do is so
who may not gain great benefits from the available upfront treatments,
readily available to patients, and the clinical trials that test drug combina-
and on determining how to best risk-stratify such patients. The IMF guide-
tions are based on such good laboratory science. There are a number of
lines aim to assist practitioners who may not see many myeloma patients
promising myeloma trials open at our center at this time.
to effectively treat those patients and to minimize the potential complica-
tions that may arise as a result of therapies. The IMF is having a significant
What is the focus of the current trials?
impact on the care of patients both at major cancer centers and in local
Firstly, there are a number of classes of drugs that are already known to
community practices.
be very active against myeloma. We have established that immunomodula-
tory agents like thalidomide and lenalidomide (Revlimid®) are very active
What is your outlook for the future?
anti-myeloma agents. Proteasome inhibitors like bortezomib (Velcade®)
I hope to see better treatments available to more patients who stand to
are also very active. These drugs have very clear activity, so what we are
benefit from them. To that end, the only way to know if a treatment is or is
focused on now is combining those two novel agents with other drugs
not effective is to test it within a well-designed clinical trial that is based on
in order to improve their efficacy, tailoring therapies to make them more
sound laboratory data and good methodology. In the last five years, such
effective while keeping the toxicities in check. We are working with heat
clinical trials have allowed the care of myeloma patients to advance more
shock proteins (HSP), histone deacetylases (HDACs), and other drugs that
than the care of patients with other cancers has advanced during this same
may not have great single-agent activity but may enhance the activity of
time period. And it is due to patient participation in myeloma clinical trials
the novel drugs we already have. Secondly, besides working with existing
that we have been able to make these gains in the field. So I would like
agents, we are also looking for new single agents. Thirdly, we are looking
to encourage patients to continue to take part in studies, so that we can
at monoclonal antibodies that have been widely used in other fields of
continue to make progress in fighting this disease. mt
oncology but not yet in the field of myeloma. However, we now have two
to four potential candidate proteins on the surface of plasma cells that
Editor's Note: Dr. Lonial is on the editorial board for Clinical Lymphoma
monoclonal proteins are now being directed at, and I think that it is only
and Myeloma and The American Journal of Clinical Oncology, as well as
a matter of time until we find an effective antibody for myeloma.
an ad hoc reviewer for Blood, Cancer Research, Clinical Cancer Research,
Haematologica, and other journals. He has authored or co-authored over
Will you please briefly explain monoclonal antibodies and their
40 papers and abstracts, and was recently appointed to vice-chair for the
mechanisms of action?
ECOG myeloma committee.
A monoclonal antibody is a protein that has been manufactured outside
800-452-CURE (2873)
5
News & Notes
WARNING: Biaxin and statins
adjusted life years (QALY ) guidelines, a measurement of cost-effectiveness
of a drug based on quality of life achieved, not just the number of years.
Co-comitant administration of Biaxin® with a variety of other medica-
The study showed that Revlimid plus high-dose dexamethasone added
tions can alter drug metabolism and potentially cause problems. This
at least three years of life compared to dexamethasone alone. Reviewers
is because Biaxin can affect drug metabolism in the liver affecting
found the data so impressive that the trial, intended to last 10 years, was
the CYP3A enzyme system. A very important example is that Biaxin®
stopped after just 18 months to allow all patients in the study to take advan-
(clarithromycin) can greatly accentuate the muscle toxicity that can be
tage of the therapy. Last year, a similar study by the Southwest Oncology
caused by statin drugs. Therefore, any combined use of Biaxin with
Group (SWOG), a US consortium, was also stopped early because of the
drugs such as atorvastatin (Lipitor®), lovastatin (Advicor®, Altoprev®,
impressive results of the Revlimid-dexamethasone combination. A study
Mevacor®), simvastatin (Zocor®), or other statins must be with great
from the eastern Cooperative Oncology Group (eCOG), led by Mayo
caution or not at all. If you are taking a statin, you should not take
Clinic, demonstrated that lowering the dose of the accompanying dexam-
Biaxin as an antibiotic or as part of your myeloma regimen at the same
ethasone could achieve better results and further improve patient quality
time. If you are currently taking both drugs, please talk to your doc-
of life. These myeloma findings provide more evidence that blood cancers
tor and have your creatine phosphokinase (CPK) enzyme measured
can be managed, allowing patients to feel good and maintain active, pro-
via a blood test. If you are experiencing any muscle pain or cramping,
ductive lives.
report this to your doctor immediately. Since a number of other drugs
New indication provides treatment-free
can be affected by Biaxin®, please review any combined use of Biaxin®
interval as an option
with other drugs very carefully with your physician and/or pharmacist.
On June 23, the US Food and Drug Administration (FDA) expanded the
benefits of Velcade® (bortezomib) for injection to a wider range of myelo-
IMF Myeloma ManagerTM
ma patients. Since 2003, Velcade has been approved for relapsed patients
Personal Care AssistantTM
who have had at least one prior therapy. The FDA has now granted the
The IMF is pleased to introduce the Myeloma ManagerTM Personal Care
use of Velcade to previously untreated patients with multiple myeloma.
AssistantTM, the first software product of its kind designed specifically to
The approval is based on positive data from the international VISTA trial of
help myeloma patients and their caregivers deal with their growing moun-
Velcade plus melphalan and prednisone (VcMP) compared to melphalan
tain of medical records and the ever increasing complexity of myeloma
and prednisone (MP) alone. VISTA is the largest ever Phase III clinical trial
treatment programs. This software program, which is NOT web-based,
in newly diagnosed myeloma patients.
instead runs on the user's computer and stores all personal data on
the user's computer. It is password-protected and encrypts (scrambles)
Pre-ASCT therapy in newly diagnosed
the data so that it is accessible only to the user and cannot be accessed
myeloma patients
from outside of the Myeloma ManagerTM. The program provides a tool to
Researchers at Mayo Clinic in Rochester, MN, have studied the effect of
capture laboratory results and display and print tables and charts to show
pre-transplant therapy in 472 newly diagnosed myeloma patients under-
how those results change over time. None of the user's data is transmitted
going autologous stem cell transplantation (ASCT). Previous studies have
to anyone. The software also includes real-time news feeds from the IMF
suggested a lack of impact of the initial therapy on the outcome after
website and a reference shelf with links to useful publications and web
ASCT. Patients received initial therapy with vincristine, Adriamycin, and
pages. Features currently under development include a calendar for doc-
dexamethasone (VAD ); thalidomide and dexamethasone; or lenalidomide
tor's appointments and treatment regimens, an "address book" for storage
and dexamethasone. Among the groups, the nature of initial treatment
of important phone numbers and addresses, and a notes section that will
utilized had no long-term impact on the outcome of ASCT, post-transplant
allow for creation of a journal of past events as well as for making notes
complications, or treatment-related mortality.
about things that need to be done in the future. Integrated scanning func-
tions will allow for scanning of medical reports or imaging studies directly
NLB Consensus on Care
into the tool to be attached to an appointment, contact, or note. Users
On May 16, "Consensus on Care: New Insights on Novel Therapies in
will also be able to attach other documents (PDFs, spreadsheets, etc.) to
Multiple Myeloma," a large symposium presented by IMF's Nurse
appointments, contacts, or notes. At present, the IMF is focused on bring-
Leadership Board (NLB), took place at the Pennsylvania Convention
ing the functions we've already designed to fruition and then making the
Center during the 33rd annual congress of the Oncology Nursing Society
tool available to the public. early users of the Myeloma ManagerTM will play
(ONS). The NLB was created by the IMF to foster a partnership with the
an important role in helping the IMF refine and enhance this software so
country's most experienced myeloma nurses. With our support, they are
that it can be most useful to patients and caregivers. We invite myeloma
able to provide a leadership role in the prevention, diagnosis, and man-
patients and caregivers who are Windows XP or Vista users to visit www.
agement of emergent treatment side effects associated with novel thera-
myeloma.org and to download the Myeloma ManagerTM in order to help
peutics. These twenty outstanding nurses have identified and addressed
us identify what we can do to make this software even more valuable. We
the unmet needs of the general myeloma nursing community, as well
very much look forward to your feedback and suggestions.
as those of their patients. The NLB's consensus recommendations were
Revlimid® meets important quality of life
developed by the NLB through a rigorous examination of scientific-based
evidence and practitioner experience; they provide for optimal manage-
issues
ment of clinical challenges presented by myeloma therapies that include
A study presented at the British Society for Haematology Annual Meeting
novel agents. Besides providing nurses across America with the tools for
demonstrates that Revlimid® (lenalidomide) has the ability to add years
improving patient care, the NLB symposium also brought the nurses up to
to myeloma patients' lives, and that these years fall within the quality-
date on current advances in myeloma research and clinical trial data. mt
6
www.myeloma.org
Scientific & Clinical
2008 imf scientific aDvisory BoarD retreat
Myeloma Today in conversation with Dr. Brian G.M. Durie
Please give us a brief overview
We've delved into the issue of deep-
of the agenda of the recent IMF
vein thrombosis and we've looked at
Scientific Advisory Board Retreat
myeloma bone disease. Of the new
held April 17-20 in Bermuda.
initiatives, one of the most impor-
The topic for the 2008 retreat was:
tant things we are looking at is the
"Clinical Trials Looking at the Next
genetic predisposition to myeloma
Questions 2008." Individual sessions
why people develop this disease in
covered response criteria, new clini-
the first place. Dr. Dalsu Baris is com-
cal trial designs, prognostic factors,
paring the genetic features of people
new management guidelines, molecu-
who get myeloma versus those who
lar testing, and new brainstorming
do not. In addition to the Bank On
priorities. The role of complete
A Cure data set of myeloma patients,
response (CR) as an indicator of treat-
Drs. Gösta Gahrton, S. Vincent Rajkumar, and Brian Durie
she has access to thousands of con-
ment benefit was a particular aspect
trols available through the National
discussed in detail. Mario Boccadoro emphasized that CR can be
Cancer Institute (NCI), where she is a staff scientist in the Division of
"cosmetic" that it might not translate into longer-term remissions. It
Cancer epidemiology. For the first time ever, it is possible to examine
is much more important to focus on the duration or length of response
these two huge data sets that will allow us to identify and characterize the
versus the depth of the response. For example, very good partial response
genetic predisposition to myeloma.
(VGPR), which means that the level of myeloma has dropped by 90%,
How might this be accomplished?
is an excellent cutoff level when combined with some indicator of length
It is a statistical issue of identifying the top genes which occur in myeloma
of response, such as time to progression (TTP, time until myeloma pro-
patients versus the individuals from the normal population (controls).
tein starts to increase again) or progression-free survival (PFS, how long
Once the genes are identified, we will be able to characterize those genes.
patients have been living in a remission state). The recommendation was
For example, the category of genes that I found in my study of bone SNPs,
to use CR + VGPR (combined) to assess response, and TTP and PFS to
and what Dr. Baris' work seems to be confirming, showed that people
determine treatment benefit as well as the longer-term outcome.
who get myeloma have an impaired ability to break down environmental
Which other aspects were emphasized at the retreat?
pollutants. It seems that people who get myeloma have defective metabo-
Dr. Vincent Rajkumar discussed the use of the new "Uniform Response
lism of toxic agents, such as dioxins, rendering them less able to clear
Criteria" developed by the International Myeloma Working Group
toxins from their systems. Such individuals may also have an intrinsically
(IMWG). There has been wide acceptance of the new criteria by the Food
defective immune system and/or a molecular defect. If we can identify
and Drug Administration (FDA), Southwest Oncology Group (SWOG),
the Achilles' heel of why people get myeloma, we can delineate a reverse
and eastern Cooperative Oncology Group (eCOG), as well as other clini-
fingerprint to identify the exposures that put people at risk.
cal trial groups. However, there is an ongoing need to provide updates
Our next step is to correlate the toxic levels with the presence of the
as new information becomes available. Developments with the Freelite®
abnormal genes or with an immune defect. We are also looking at infec-
serum free light chain assay and molecular testing, as well as imaging
tion if a person cannot clear particular bacteria, then we can correlate
(such as MRI and CT/PeT scanning), are good examples of this. We plan to
the presence of that bacteria with an immune defect. This takes us to
publish new guidelines to cover new developments in each area. Dr. John
the next step of confirming in a positive way the presence of the factors
Crowley, the chief statistician for the IMWG, discussed the need for what
that are triggering the myeloma we must correlate susceptibility with
is called "landmark analysis." This means that long-term survival, which
the presence of the factor that the person is susceptible to. This is very
is fortunately occurring much more commonly, must be interpreted with
exciting, leading us back to the first key observation of SNPs that link to
care. The impact of new treatments, such as thalidomide, Revlimid®, and
myeloma.
VeLCADe® is demonstrating a greater likelihood of survival for longer
than 47 years. To study this trend carefully, one can assess all patients
What is the timeline for this work?
who were doing well at 2, 3, or 4 years (for example) and see how many
We have the data, and Dr. Baris has been "crunching the numbers" for sev-
such patients are still doing well beyond 10 years. A recent study by Dr.
eral months already. She presented her preliminary finding at the retreat
Bart Barlogie showed survival benefit with thalidomide use only after
in Bermuda. This work should be ready in abstract form in August, in time
more than 7 years of follow-up. It is very encouraging that we now have
for submission to 50th annual meeting and exposition of the American
the need and the opportunity to use such techniques.
Society of Hematology (ASH). The manuscript would then be prepared for
presentation at the ASH meeting in December 2008. We already have a lot
What is the status of the IMF Bank On A Cure® research initiative?
of data on the pattern of myeloma, which is determined by a combination
Phase one of Bank On A Cure has been completed. We've looked at single
of the SNPs and the GeP.
nucleotide polymorphisms (SNPs) of thousands of myeloma patients.
Continues on Page 8
800-452-CURE (2873)
7
Scientific & Clinical
SAB RETREAT -- continued from page 7
VELCADE as Frontline Therapy for Myeloma
What is GEP?
By Brian G.M. Durie, MD
GeP stands for gene expression profile, the measurement of the profile of
In a recent trial (presented at ASH 2007 and currently in press) with
the high or low activity of genes in myeloma cells. The GeP of myeloma
Prof. Jesus San Miguel as the senior investigator (see last issue Myeloma
can, for example, reflect the aggressiveness or the pattern of the disease,
Today), it was shown that combining VeLCADe® (bortezomib) with
melphalan and prednisone (VMP) gave results much better than with
and the susceptibility or the ability of the microenvironment to resist it.
melphalan and prednisone (MP) alone. Based upon the results of this
The GeP pattern of myeloma has been studied by Dr. John Shaughnessy
pivotal trial, the FDA approved the use of VeLCADe's indication to
in the US, by Dr. Herve Avet-Loiseau on behalf of the French Myeloma
include the frontline setting on June 20, 2008.
Cooperative Group, by Dr. Pieter Sonneveld for the european Myeloma
Network, by the Italian myeloma cooperative group, and by a number of
This is great news for all myeloma patients, who will now have greater
other groups. We have substantial SNP information to correlate with the
and easier access to VeLCADe for frontline use. VeLCADe is specifically
GeP. For example, I have already done this in my study of myeloma bone
approved as part of the VMP regimen. However, it is anticipated that
disease, showing that this susceptibility correlated with the DKK-1 GeP
there will be a broad and expanding role for VeLCADe for previously
untreated patients not eligible for stem cell transplantation, as well as
pattern. Our follow-up studies are using the genome-wide screening chip,
for patients receiving induction in preparation for harvesting and autolo-
a chip that identified SNPs throughout all the chromosomes.
gous transplantation. For example, in the transplant situation, VeLCADe
Would you please explain genome-wide screening?
has been combined with dexamethasone, Cytoxan®, thalidomide,
For Bank On A Cure, we developed a custom SNP chip and selected the
and Doxil®.
3400 genes that we saw as being most relevant to myeloma. There are
Right now the search is on to determine which combination will work
obviously many more genes, and the question is whether or not there
best. In the meantime, it is a challenge for physicians and patients alike
are other genes related to myeloma that we have not yet identified. The
to assess which combination is promising on an individual case-by-case
genome-wide screening chip identifies the whole genome, starting with
basis. The choices are not made any easier by the availability of not just
chromosome #1 and continuing through the genome in segments, iden-
VeLCADe combinations, but those involving thalidomide or Revlimid.
tifying if myeloma is correlated with abnormalities in any of the segments.
In addition, the VeLCADe plus thalidomide and dexamethasone (VTD)
Because each segment contains a number of genes, genome-wide screen-
regimen is very promising. In the trial setting the combination of
ing doesn't reveal the specific gene but rather identifies which segments
VeLCADe plus Revlimid® (lenalidomide) plus low-dose dexametha-
are important to explore further. This is a slightly different methodological
sone is especially attractive since excellent results have occurred in
Phase I/II trials.
approach, but it is important for us to know if the custom SNP we have
developed is missing any relevant genes.
Thus the difficulty is to make the best choice. The good news is that
even better combinations are becoming available to achieve longer
One tool that would be very useful is to be able to do DNA testing with a
remissions, with the option to improve both quality of life and long-term
simple blood test, so I have been working on this project with Dr. Howard
survival. mt
Urnovitz. We have been looking at genome-wide screening, studying DNA
patterns present in myeloma blood samples obtained during the course
Current IMWG Projects and Lead Authors
of treatment. The resulting information will be summarized in an abstract
· AMD 3100 (plerixafor) as a stem cell mobilizer for patients with
being submitted to ASH, followed by a manuscript.
myeloma: guidelines Sergio Giralt, Brian Durie, Bill Bensinger,
edward Stadtmauer
What is the status of the Bank On A Cure "swish and spit" kits?
· Lenalidomide and stem cell harvesting guidelines Shaji Kumar,
We are finishing up the analysis on the kits that were collected during the
Brian Durie, Vincent Rajkumar, Paul Richardson
first phase of this project. We have linked the kits with an epidemiological
· Overall lenalidomide guidelines Hermann einsele, Antonio Palumbo,
survey completed by each person who has submitted a kit. As a result,
Brian Durie
we will be able to evaluating the patients' history of exposure and infec-
· International Myeloma Working Group guidelines for serum free
light chain analysis in multiple myeloma and related disorders
tion with their SNP panel. This is the first step in correlating what causes
Angela Dispenzieri
myeloma. Dr. Brian Van Ness is currently running the DNA analysis on the
· Monoclonal Gammopathy of Undetermined Significance (MGUS)
patients. For controls, we used patients' family members. Dr. Baris, who is
and Smoldering (Asymptomatic) Multiple Myeloma: Risk Factors
an expert on the survey forms, is involved with this project as well.
for Progression Robert Kyle
· Long-term Follow-up with ISS Staging, project with CRAB
Were there any other initiatives addressed at this retreat?
Brian Durie
Another thing that happened at the 2008 IMF Scientific Advisory Board
· Molecular Genetics Guidelines Herve Avet-Loiseau, Rafael Fonseca
Retreat is that we convened an advisory board for Proteolix Inc., a com-
· Survival as an Endpoint Vincent Rajkumar, Brian Durie
pany developing carfilzomib, a second-generation proteasome inhibitor
· Anemia, EPOGEN Guidelines Heinz Ludwig, Kenneth Anderson
(VeLCADe® being first generation). Carfilzomib seems to be more potent
· Role of PET SCAN/ Imaging Meletios Dimopoulos, Orhan Sezer
than bortezomib and does not cause neuropathy. Proteolix wanted to get
· Role of Allogeneic Stem Cell Transplant Guidelines
Henk Lokhorst
input from IMF's advisors about the best trial design to speed the approval
· Albumin, B2-Microglobulin Methodology for Staging
process of carfilzomib. The drug is currently in Phase I and II trials, with
Philip Greipp, Roman Hajek
Phase III trials moving toward registration. Advice was provided concern-
· Updated Response Criteria Brian Durie, Vincent Rajkumar
ing best trial design. mt
8
www.myeloma.org
Scientific & Clinical
Dsmm: Deutsche stuDiengruppe muLtipLes myeLoma
Myeloma Today in conversation with Prof. Dr. Hermann Einsele
you are Chairman of DSMM. Please tell us a little
a tool to discriminate between standard and high-risk
about the group's founding.
disease. Risk-adapted therapy is based on allogeneic
DSMM (Deutsche Studiengruppe Multiples Myeloma),
transplantation versus tandem autologous transplant for
the German multiple myeloma study group, was found-
high-risk subjects with chromosome 13 deletion who
ed in 1994. At that time, there were several doctors
have an HLA-identical stem cell donor available.
in Germany who were very interested in the field of
We are looking at a new protocol of bortezomib,
myeloma. We participated in pre-clinical and clinical
cyclosphomide, and dexamethasome (VCD) as upfront
studies, and we decided to join forces to move the field
treatment for high-risk younger patients. Nearly 300
of myeloma forward in a more efficient and productive
patients were treated with VCD as induction therapy. In
way. It has now been 14 years that we have been col-
addition, bortezomib (Velcade®) consolidation therapy
laborating on performing myeloma clinical studies.
post-transplant is evaluated in a randomized study. We
Would you please share with us an overview of the
hope that the data we are generating will facilitate the
current activities of DSMM members?
approval of bortezomib for the frontline treatment of
myeloma patients in Germany.
In Germany, there is much ongoing investigative activity
in the field of myeloma. Currently, there are interest-
Do members of DSMM collaborate with other
ing projects underway by Prof. Orhan Sezer (Berlin),
Hermann Einsele, MD
myeloma cooperative groups?
Würzburg University Hospital
who is an expert on bone metabolism and myeloma
Würzburg, Germany
Yes, we collaborate with other myeloma cooperative
bone disease, Dr. Peter Liebisch (Ulm), who is studying
groups, including GIMeMM (Italian Cooperative Group)
molecular cytogenetics of myeloma, Dr. Dirk Hose (Heidelberg), who
and HOVON (the Dutch-Belgian Hemato-Oncology Group). In addition,
is working on gene expression profiling of myeloma cells, Dr. Christian
we collaborate with other myeloma experts in the european Union. For
Straka (Munich), who is focusing on new treatment strategies for elderly
example, Prof. Henk Lokhorst (University Hospital Utrecht) and I are cur-
myeloma patients, and Dr. Monika engelhardt (Friberg), who is develop-
rently co-chairing the working group on allogeneic stem cell transplanta-
ing mouse models for myeloma.
tion for myeloma.
And what about the research being performed at your center in
Outside the clinical trial setting, what myeloma therapies are currently
Würzburg?
available to patients in Germany as frontline treatment?
My group in Würzburg is concentrating on three separate areas of
research. One group is working on pre-clinical models for myeloma to try
Thalidomide has been recently licensed in Germany, but only in the
to define new targets, as well as on interphasing various clinical studies.
frontline setting and only for the treatment of elderly patients in combina-
From our pre-clinical models, we have several novel agents that are tested
tion with melphalan and prednisone. Bortezomib is not yet available for
primarily here in Würzburg, then developed for clinical studies. Another
frontline treatment but it looks like it may get approval in September or
group is developing ways to improve the outcome of both autologous and
October of this year. We are also hopeful that lenalidomide (Revlimid®)
allogeneic stem cell transplantation (SCT). In addition, we have a group
will become available to elderly patients either by the end of this year or at
of doctors looking at gene and immune-therapy, both with and without
the beginning of next year. I personally feel that younger patients who will
transplantation.
undergo transplant would also benefit from these novel agents, and this
position is supported by preliminary results of several studies.
In Würzburg, we have very good pre-clinical models from myeloma cell
lines. We can actually use primary myeloma cells, and we have animal
What about myeloma therapies in Germany for relapse/refractory
models as well. We are testing a lot of new drugs in the pre-clinical setting
disease?
and, therefore, we get a very clear sense of which drugs are likely to prog-
In Germany, unlike other countries in europe, relapsed/refractory patients
ress to the clinical setting. In addition, we work with colleagues from the
have access to all the novel agents, both as single agent and in combina-
chemistry and pharmaceutical departments and we use our models to pre-
tion therapies. In addition, in younger patients we offer allogeneic SCT for
screen a wide range of different drugs for potential anti-myeloma efficacy.
patients relapsing after auto-SCT.
We conducted a large Phase I/II study of the Revlimid® (lenalidomide),
It seems that members of DSMM have a strong relationship with
doxorubicin, and dexamethasone (RAD) protocol. In patients with
the patient community. Is this impression correct?
relapsed or refractory myeloma, we have found this protocol to be
Yes, in Germany there is very close contact between patient groups and
extremely effective, with a rate of complete remissions (CR) of nearly
the myeloma specialists. We hold joint meetings at least every two months.
70%. Now we are studying the RAD protocol as frontline therapy prior
We provide education to the patient groups, which are very effective at
to transplant.
providing support to their members. I would say that the myeloma patient
One recent Phase III multi-center DSMM trial for newly diagnosed myelo-
support groups are the best organized and most effective of the various
ma patients under 60 years of age, recruiting more than 800 patients,
patient groups in Germany.
evaluated risk-stratification by the means of a chromosomal aberration as
Continues on Page 11
800-452-CURE (2873)
9
Scientific & Clinical
upDate from asco
Myeloma Today in conversation with Dr. S. Vincent Rajkumar
At the 44th annual meeting of the American
The ones who opted for transplant had slightly
Society of Clinical Oncology (ASCO), which
lower response rates at four cycles. The lenalido-
concluded at the beginning of June, you
mide/dexamethasone hypothesis needs to be tested
presented continuing results of the E4A03 trial,
in a randomized comparison.
which is coordinated by the Eastern Cooperative
Were there other significant ASCO
Oncology Group (ECOG). What can you tell us
presentations dealing with newly diagnosed
about your findings?
myeloma?
e4A03 is a Phase III trial of lenalidomide (ReVLIMID®)
One interesting presentation, by Dr. Jean-Luc
plus high-dose dexamethasone versus lenalidomide
Harousseau (Hotel-Dieu Hospital, Nantes), updated
plus low-dose dexamethasone in patients with newly
data from Intergroup Francophone du Myelome
diagnosed multiple myeloma. In the primary trial anal-
(IFM) 2005/01 trial. The Phase III trial of bort-
ysis of e4A03, we found that the overall survival (OS)
ezomib (VeLCADe®) plus dexamethasone versus
at one year and two years was in favor of the low-dose
vincristine-doxorubicin-dexamethasone (VAD) as
arm. At one year, the OS rate was an unprecedented
induction prior to autologous stem cell transplan-
96%. The two-year OS for the lenalidomide plus low-
tation (ASCT) in previously untreated myeloma
dose dexamethasone arm of the study was 88%, com-
shows an increased response rate before ASCT. The
pared with 78% for the lenalidomide plus high-dose
patients are being followed and, at this point in
dexamethasone arm. I must emphasize that at this time
S. Vincent Rajkumar, MD
time, there are no significant differences in survival
we don't have long-term data on how long these OS
Professor of Medicine
between the two regimens.
differences will last.
Mayo Clinic
If bortezomib/dexamethasone is showing
What can you tell us about the landmark analysis
Rochester, MN
improved response before transplant, why is
of the ongoing results?
there no difference in survival?
A landmark analysis begins from a point within a study, so measurements
All the patients proceeded to transplant, which may be neutralizing the
all proceed from that set point. In this case, landmark analysis began at
improved induction results. Additionally, as in the eCOG trial, follow up
completion of four cycles of lenalidomide/dexamethasone, when deci-
is too short to know one way or the other. But it is important for patients
sions on further treatment had to be made. At this time point, 431 of the
to know that this IFM trial, as well as the eCOG trial we just discussed,
445 patients were alive, and 255 elected to stay on lenalidomide/dexam-
present two options for induction regimens that are both reasonably
ethasone therapy, while the remainder stopped protocol therapy. Of those
well established.
who stopped protocol therapy, about half went on to have transplant,
and the remaining half decided to either just stop therapy or go on to
Dr. Paul Richardson (Dana-Farber Cancer Institute) presented data at ASCO
other regimens.
on a Phase II trial combining these three drugs VeLCADe, ReVLIMID,
The two-year OS in the three groups were as follows: 70% for patients who
dexamethasone (VRd) and he was able to show 100% response rates,
stopped therapy after four cycles, about 93% for patients who went on to
with 70% of patients achieving either CR or very good partial response
transplant after four cycles, and about 93% for patients in the lenalidomide
(VGPR). This was a smaller study of approximately 60 patients, and there
low-dose dexamethasone arm who took therapy beyond four cycles.
was no control arm, so we have to be careful how we interpret these
results. Those caveats notwithstanding, it is still very encouraging to see
What comes next?
such a response rate. It will be interesting to see randomized trials of VRd
In the next cooperative group trial in the US, lenalidomide plus low-dose
versus lenalidomide/dexamethasone (SWOG trial) and VRd versus bort-
dexamethasone regimen is used as the "standard" treatment to which
ezomib/dexamethasone (eCOG trial), and I would encourage patients to
the three-drug combination of bortezomib, lenalidomide, and low-dose
consider entering these Phase III trials.
dexamethasone (VRd) is compared to. In elderly patients, lenalido-
mide plus low-dose dexamethasone is being tested as a replacement
There were other promising combination induction regimens presented at
for melphalan-prednisone-thalidomide (MPT). These future trials will
ASCO, including the Phase II cytoxan-bortezomib-dexamethasone (CBD)
guide us on what role this regimen will play in long-term management
study presented by the Mayo Clinic in Scottsdale, and the bortezomib-
of myeloma.
adriamycin-dexamethasone (PAD) regimen presented by Dr. Antonio
Palumbo (University of Torino) on behalf of the Italian Multiple Myeloma
If myeloma patients can achieve 93% two-year survival with
Study Group.
lenalidomide low-dose dexamethasone, why should they still
consider transplantation?
What relapse studies presented at ASCO were of interest?
Myeloma patients who are eligible for transplant should never give up
There were updates of lenalidomide trials in the relapsed setting, includ-
this option, because it is still the standard of care, whether it's done early
ing a study presented by Dr. Richardson of long-term follow up with
or late. The fact that lenalidomide low-dose dexamethasone as primary
patients who had been on lenalidomide for more than four years. The
therapy gave us results in the same range as transplant was very surpris-
promising message of this trial is that a subset of patients with advanced
ing and very encouraging. But ours was not a randomized result. Many
myeloma can sustain response for more than four years after starting
patients who were responding well to the therapy at the four-cycle time
salvage therapy.
point just wanted to stay on it, so they're inherently a biased population.
Continues on Page 11
10
www.myeloma.org
Scientific & Clinical
UPDATE FROM ASCO -- continued from previous page
Dr. Kenneth Anderson (Dana-Farber Cancer Institute) presented encour-
Such patients may be better off staying in the "MGUS-like" low disease
aging results from a Phase II study of VeLCADe, ReVLIMID, and dexam-
burden state than trying to intensify therapy in an attempt to reduce
ethasone (VRd) in patients with relapsed/refractory myeloma.
minimal disease to zero.
Dr. Mohamad Hussein (H. Lee Moffitt Cancer Center) presented on a
· Finally, myeloma is not a single disease but likely a heterogeneous
lenalidomide study that was done years ago. He found a 30% response
group of diseases with different genetic components and types. Dr. Bart
rate among the relapsed/refractory myeloma patient population using
Barlogie (University of Arkansas for Medical Sciences) has shown that if
lenalidomide as a single-agent. It is impressive that almost a third of the
you look at the myeloma patient population, there is a small high-risk
patients responded to treatment that included nothing but lenalidomide.
group (about 15%) that benefit greatly from achieving CR, but the vast
majority of patients (about 85%) had the standard-risk type of myeloma
How does one compare results of studies using a single agent to
where the long-term survival outcome was similar whether they reach
trials using two, three, or four drugs?
CR or not.
Ideally, you can look at randomized trials that show a benefit at an end-
point that's meaningful. A study may show that three drugs get a better
As is said earlier, I am very much in favor of a goal that seeks high 100%
response rate than two drugs. That's not surprising of course three
CR rates in myeloma with effective therapy. But we need studies looking at
active drugs are better than two! But once you use those three drugs, you
better definitions of CR. To that end, the International Myeloma Working
no longer have them in your arsenal when the patient relapses. Patients
Group (IMWG) has come out with a more stringent definition of CR
who take two drugs will still have that third drug as an option in the
(termed "stringent CR"). We also encourage trials to report CR plus VGPR,
future. What we really need to look at is OS, and at this time we have no
which may be a more appropriate, reproducible, end point than CR. mt
such comparative studies. But we do have some clues from comparisons
of some older trials, like VISTA and IFM, that showed not only improved
response but also improved OS by adding a third agent early in the treat-
What do you get at an
ment course.
IMF Patient & Family Seminar?
This raises a question regarding an issue you addressed at ASCO
·Education
·Access to Experts
during both educational and oral sessions. you've said that the best
Get vital, up-to-date information,
Get one-on-one access to the
indication of survival is survival. Isn't CR an indication of survival?
including:
experts with time to ask questions
One controversy in the field of myeloma is whether we should treat
· Options for front-line therapy
about your treatment options.
patients until they reach the CR end point, or there is another end point
· What to do at relapse
·Camaraderie
to focus on. I believe CR is a good thing to achieve, and very desirable in
· What is the current role
Share your experiences and gain
of transplantation
myeloma. But some caveats must be kept in mind and additional research
strength from hearing other
· Which emerging therapies
is needed:
people's stories, as you become
look promising
part of the IMF family.
· CRisnotaconsistentpredictorofeventualOS.Whiletherehavebeentrials
See the calendar on the back page for dates and locations of upcoming
in which the arm that had the higher CR rate went on to be the arm that
seminars. To register for a seminar, please call (800) 452-CuRE (2873)
showed the better survival, there have also been trials in which the arm
or email TheIMF@myeloma.org.
that had the better CR rate did NOT show better survival. Patients who
achieve CR are likely to do well compared to patients who don't achieve
CR. But there are many myeloma patients who get into a very good
DSMM -- continued from Page 9
partial response (VGPR) and do just fine.
We also have a very close collaboration with the IMF, in part through
· Assessing CR is dependent on a subjective test immunofixation
Gregor Brozeit, Director of IMF europe. US myeloma specialists have
which is a lot like examining a photograph to see if you spot a mark on
come to Germany to make presentations to our patient groups, and I have
the image. Immunofixation is not performed by an infallible laboratory
presented at meetings of two myeloma support groups in the US.
instrument. Instead, one looks at a gel for a "band" pattern. Sometimes,
the band can be so faint that one person will think they see it while
What is your outlook for the future?
another will not. Thus this test can be very observer-dependent.
The next generation of novel agents is forthcoming, and there are several
· To achieve CR we often intensify therapy, and this may be a double-
promising new drugs that we are already testing at our center, including
edged sword. Intensified and/or prolonged therapy to achieve CR
a histone deacetylase (HDAC) inhibitor, novel antibodies directed at the
may result in higher toxicity and cost, and more side-effects impacting
myeloma cells, two different heat shock protein (HSP) inhibitors, and an
quality of life. And there is no good data that getting a CR at all costs
inhibitor of the Hedgehog signaling pathway. A new proteasome inhibitor,
improves survival. For patients who reach CR, its duration must also be
the next generation of bortezomib, is currently in Phase I and II trials, with
taken into consideration. This can depend on a number of things that
Phase III trials slated to start before the end of this year.
might happen after the CR is achieved new drugs may become avail-
able, complications may occur, etc.
I would also like to mention that we need to continue to work towards
a greater collaboration with medical specialists in the areas where many
· Millions of Americans have small monoclonal proteins in their blood
myeloma patients encounter problems, such as orthopedics and radiology
(MGUS), and those proteins are not a problem. It is possible for a
and so on. In addition, we need to continue to strengthen both pre-clinical
myeloma patient to regress to a minimal residual disease or MGUS-like
and clinical myeloma research, and continue to collaborate and exchange
stage, where the small amount of M-protein does not cause problems.
information with colleagues in all parts of the world. mt
800-452-CURE (2873)
11
Nurse Leadership Board
nLB activities upDate
Page Bertolotti, RN, BSN, OCN
Myeloma Today in conversation with Elizabeth Bilotti, MSN, APRN, BC, OCN
Cedars-Sinai Medical Center
Samuel Oschin Comprehensive Cancer Institute
you are the leader of Long-
How will the Long-Term Care
Los Angeles, CA
Term Care Plan Taskforce of
Plan benefit the community?
Elizabeth Bilotti, RN, MSN, APRN, BC, OCN
the nurse Leadership Board
St. Vincent's Comprehensive Cancer Center
NLB members saw a need to
New York, NY
(nLB). What is the basic aim of
develop a Long-Term Care Plan for
this task force?
Jacy Boesiger, RN, BSN, OCN
myeloma patients to provide access
Mayo Clinic Scottsdale
The novel therapies that have
to essential information and to raise
Scottsdale, AZ
become part of the treatment
awareness about overal wel ness
Kathleen Colson, RN, BSN, BS
options available to today's mul-
from a primary healthcare stand-
Dana-Farber Cancer Institute
tiple myeloma patients have had
point. The NLB's Long-Term Care
Boston, MA
a positive impact on survivorship.
Plan will offer recommendations
Kathy Daily, RN, TSN
Myeloma patients are living lon-
about immunizations and vaccina-
H. Lee Moffitt Cancer Center and Research
ger with their disease, and the
tions, and explain how problems in
Tampa, FL
medical professionals tending to
various areas of health may impact
Deborah Doss, RN, OCN
Elizabeth Bilotti,
their care must address long-term
MSN, APRN, BC, OCN
side effects of myeloma treatments,
Dana-Farber Cancer Institute
Multiple Myeloma/
Boston, MA
consequences of myeloma and its
Transplant Program
as well as a patient's myeloma treat-
treatments, as well as other health
St. Vincent's
ment options. This information will
Beth Faiman, RN, MSN, CNP, AOCN
Cleveland Clinic
maintenance issues that may not
Comprehensive Cancer Center
be of value to the patient commu-
Taussig Cancer Center
have been part of the overall pic-
New York, NY
nity, as well as to healthcare profes-
Cleveland, OH
ture a decade ago. The Long-Term
sionals in clinical practice.
Bonnie Jenkins, RN, OCN
Care Plan Taskforce was formed to identify and articu-
University of Arkansas Medical Sciences
late these issues and to disseminate this information
What progress has been made by this taskforce
Little Rock, AR
to the patient and the medical communities. All mem-
so far?
Kathy Lilleby, RN
bers of the NLB are working on this project.
To aid the development of the NLB's Long-Term Care
Fred Hutchinson Cancer Research Center
Plan, NLB members broke into four-person groups,
Seattle, WA
Can you give us an example of issues that the
each group focusing on a separate aspect of the plan
Ginger Love, RN, OCN
taskforce is addressing?
Bone Health and Bone Disease, Functional Mobility
University of Cincinnati Hem/Onc Care
Cincinnati, OH
The taskforce is focused on developing statements on
and Safety, Renal Complications and Disease, Sexuality
bone health and bone disease, cardiovascular health,
and Sexual Dysfunction, and Health Maintenance
Patricia A. Mangan, APRN, BC
University of Pennsylvania
functional mobility and safety, renal complications,
(which includes wellness screenings recommended
Philadelphia, PA
sexuality and sexual dysfunction, chronic pain and
by the US Preventive Services Task Force). Chronic
Emily McCullagh, RN, NP-C, OCN
pain management, and health maintenance (e.g. PSA
pain and pain management is a part of each category,
Memorial Sloan-Kettering Cancer Center
testing and colonoscopy, good exercise and nutri-
as applicable. each of these sub-groups is now in the
New York, NY
tion habits, and monitoring the risks for developing
process of developing a recommendations outline for
Teresa Miceli, RN, BSN
comorbidities, or other illnesses).
their section of the Long-Term Care Plan.
Mayo Medical Center
Rochester, MN
Why is the taskforce focusing on health
How do you plan to disseminate the plan in the
maintenance beyond myeloma treatment?
future?
Kena Miller, RN, MSN, FNP
Roswell Park Cancer Institute
While the patients and their oncology teams are
The NLB taskforce will address how to best dissemi-
Buffalo, NY
focused on addressing the myeloma diagnosis and
nate the information in the next phase of this project,
Tiffany Richards, MS, ANP, AOCNP
treatment, it is very important not lose sight of
but I would like to share with Myeloma Today readers
MD Anderson Cancer Center
a patient's overall health. Although we see many
the importance of this project. effective interventions
Houston, TX
younger patients with myeloma, the average age of
for reducing the incidence and severity of disease
Sandra Rome, RN, MN, AOCN
patients is in the upper decades of their life span.
in the US are those that address the personal health
Cedars-Sinai Medical Center
Los Angeles, CA
Wellness screening is something that every healthy
practices of patients. To effectively address health
person should undergo, and such screening is even
practices, patients must understand why it is impor-
Stacey Sandifer, RN, BSN
Cancer Centers of the Carolinas
more important to a person with myeloma.
tant for them to take actions to benefit their health
Greenville, SC
in addition to what they must already do for their
Why is wellness screening of particular
Joseph Tariman, RN, MN, ARNP-BC, OCN
myeloma. This might seem like an added burden,
importance to myeloma patients?
University of Washington
but patients who understand the specific reasons
Seattle, WA
Myeloma patients must pay attention to their overall
why they should improve their personal health prac-
Jeanne Westphal, RN
health, because any complications that they might
tices and lifestyle may be able to prevent unnecessary
Meeker County Memorial Hospital
experience may hinder our ability to treat their
complications.
Litchfield, MN
myeloma. Treatment of additional health issues that
a myeloma patient might face may cause increased
toxicities and side effects from therapies.
Continues on Page 14
12
www.myeloma.org
Supportive Care
gastrointestinaL siDe effects associateD with myeLoma therapies
Myeloma Today in conversation with Page Bertolotti, RN, OCN
Please define gastrointestinal side effects as they
Patients with abnormally low levels of red blood cells,
relate to myeloma treatment.
neutrophils (granulocytes), and/or platelets should
Gastrointestinal (GI) side effects include constipa-
avoid rectal agents and/or manipulation to manage
tion, diarrhea, nausea, and vomiting. GI side effects
their constipation.
may occur as a result of any anti-cancer therapy, from
Management of diarrhea may also include increasing
conventional chemotherapy to treatments using novel
hydration in the form of water, electrolyte replace-
agents such as lenalidomide (Revlimid®), thalidomide
ment beverages, nutrition-rich sports drinks, diluted
(Thalomid®), and bortezomib (Velcade®). GI side
fruit juices, and broth, while avoiding alcoholic,
effects may be managed with appropriate medical
caffeinated, carbonated, and high-sugar beverages.
interventions, thereby minimizing their impact on the
Patients with diarrhea may be advised against high
patient's quality of life and adherence to therapy.
fiber, high fat, and heavily spiced foods, as well as
The side effects from conventional chemotherapy
dairy products. If a patient experiences diarrhea while
have been studied over the years, so the IMF's Nurse
receiving anti-myeloma therapy that is not known to
Leadership Board (NLB) focused on developing a
cause this side effect, a culture or other measures may
consensus statement for assessing and managing GI
have to be taken to ascertain the cause.
side effects associated with novel therapies. The NLB
What are some management strategies for coping
recommendations are the result of evidence-based
Page Bertolotti, RN, BSN, OCN
with nausea and vomiting?
reviews, as well as a consensus of the experience of Cedars Sinai Outpatient Cancer Center
NLB members. These recommendations are applicable
at the Samuel Oschin
Nausea is an uncomfortable or unpleasant sensation
Comprehensive Cancer Institute
for managing GI side effects caused by any chemothera-
in the stomach or at the back of the throat. Nausea
Los Angeles, CA
peutic agent, novel or conventional.
may or may not result in vomiting. Many patients
worry that nausea is an inevitable result of cancer
What impact might GI side effects have on a patient?
therapy, and the patients' expectation of nausea has been shown to
GI side effects can have a negative impact on a patient's quality of life
correlate with its development during treatment, so prevention is key,
and may even interfere with optimal therapy for that patient's myeloma.
especially early in therapy. If a patient has (or is at risk for) nausea, we
Adequate management of GI toxicities has been shown to increase
recommend appropriate prophylactic and therapeutic interventions and
adherence to the treatment regimen, decrease physiological impairment,
an effective nausea management plan. Non-pharmacologic interventions
improve quality of life, decrease psychological effects like anxiety and
can be used in conjunction with drug interventions. Patients may benefit
depression, and prevent adverse events that may lead to hospitalization,
from acupuncture, acupressure, guided imagery, music therapy, and pro-
as well as other serious complications. Patients whose GI side effects are
gressive muscle relaxation. With anti-emetic therapy and care and advice,
managed are also less likely to become socially isolated. It's important
the incidence and severity of nausea can be reduced. It should be noted
to remember that when patients experience a decreased quality of life,
that some anti-nausea medications can cause constipation.
caregivers are also affected.
Patients may also experience anticipatory nausea, which occurs before
How are GI side effects assessed?
receiving an anti-cancer treatment. Some patients begin experiencing this
while they are at home getting dressed to go for their therapy. Anticipatory
The National Cancer Institute (NCI) Common Terminology Criteria
nausea is a conditioned response resulting from an aversion patients feel
for Adverse events (CTCAe) is used to identify, quantify, and monitor
towards therapy. Anticipatory nausea requires preventative strategies that
treatment-related side effects. NCI CTCAe measures toxicities as grades 1
form the basis of management of therapy-associated nausea. A sedative
through 5 (1 is mild, 2 is moderate, 3 is severe, 4 is life-threatening or dis-
taken in advance of the anti-myeloma treatment may reduce or eliminate
abling, and 5 defines death associated with the adverse event). Grading the
the incidence of anticipatory nausea.
toxicities also helps determine if there is a need for dosage modifications.
Vomiting is often confused with nausea but is, in fact, a separate phenom-
Are there management strategies for coping with GI side effects
enon that may or may not occur in conjunction with nausea sometimes
that you can share with our readers?
vomiting is preceded by nausea and sometimes not. Vomiting is a mecha-
First, I'd like to make the point that all patients should report any GI side
nism by which the body attempts to expel toxins. Vomiting, along with
effects to their healthcare providers who can offer guidance for manag-
nausea, is considered one of the most disturbing and feared side effects of
ing the adverse events. Then clinicians and patients should weigh the
cancer treatment, but vomiting can be one of the most manageable side
beneficial vs. the harmful effects of all interventions according to that
effects of cancer treatment today.
patient's individual circumstances and priorities.
In closing, is there anything else that you would like to share with
If a patient experiences fewer bowel movements than usual, this should
our readers?
be reported. If two or three days go by without a bowel movement,
Gastrointestinal side effects such as constipation, diarrhea, nausea, and
this should be reported immediately. Management of constipation may
vomiting are some of the most manageable side effects of cancer therapy,
include increased oral fluid intake, increased fiber intake, increased physi-
and I encourage patients to promptly report their experiences to their
cal activity, nutritional adjustments, stimulant laxatives, stool softeners, or
pharmacologic measures. To counter potential opioid-induced constipa-
tion, a prophylactic regimen should be considered.
Continues on Page 14
800-452-CURE (2873)
13
Supportive Care
imf hotLine coorDinators answer your Questions
The IMF Hotline 800-452-CURE (2873) is staffed by Debbie Birns, Paul Hewitt, Nancy Baxter, Missy Klepetar.
The phone lines are open Monday through Friday, 8am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
I had a stem cell transplant about four
and were followed for four years. The
months ago and just got word that my
authors' two major conclusions were:
myeloma is in remission. My bone marrow
"Thalidomide is an effective mainte-
biopsy was normal and the doctor can't
nance therapy in patients with mul-
find the myeloma protein in my blood.
tiple myeloma," and "Maintenance
I had hoped to enjoy my remission, but
treatment with pamidronate does
my doctor wants me to consider taking
not decrease the incidence of bone
thalidomide as an "insurance policy" to
events."
keep the myeloma from coming back. What
is your take on maintenance therapy?
However, examining more closely the
conclusion that thalidomide is an effec-
Two caveats are in order. First, we are defin-
tive maintenance therapy, one must
ing "maintenance therapy" narrowly to signify
look at the subset of patients for whom
treatment given following stem cell transplant
Debbie Birns, Paul Hewitt, Nancy Baxter, and Missy Klepetar
this statement was true. The authors
to "maintain" the gains made with high-dose
summarized their findings as follows:
therapy. The issue of maintenance therapy
"...because responses may occur with doses of 50 to
It was true for patients who failed
following induction or "frontline" therapy is
100 mg/day, maintenance therapy with these low doses
to achieve at least a VGPR. In other
a thorny and unresolved one, and there is
should be proposed... thalidomide could benefit patients
words, thalidomide was beneficial for
simply not enough clinical trial data available
the active treatment of residual disease
to establish guidelines. Second, it is important
who do not have a very good partial response (VGPR)
( 10% residual) after transplant.
to note that even in the context of ongoing
at time of randomization, but has a limited effect among
therapy after autologous stem cell transplant,
patients already in VGPR at time of randomization.
The authors, thus, do not recommend
maintenance therapy is a controversial and
Thus, thalidomide may improve the survival by reducing
ongoing thalidomide treatment for
much-discussed topic in myeloma, and we are
patients who are already in complete
the tumor mass after high-dose therapy rather than
far from having a definitive answer.
remission (i.e. those in whom no
by a pure maintenance effect. This result also suggests
monoclonal protein can be measured).
The first and simplest statement that can be
that stopping thalidomide as soon as VGPR has been
Much more research needs to be done
made concerning maintenance therapy post
reached could be an effective strategy to reduce the
on the issue of maintenance therapy
transplant is: for patients who are in com-
side effects and to avoid thalidomide resistance at time
both post transplant and in the non-
plete remission (CR) or very good partial
of relapse."
transplant setting. Below are some of
response ( VGPR, or 90% reduction in
the areas that are under investigation:
monoclonal protein) after an autologous transplant, there are no
data to indicate that further therapy is necessary and/or beneficial.
· the role of corticosteroids added to thalidomide maintenance;
· the role of maintenance therapy in patients with high-risk myeloma;
If the response to auto transplant is less than VGPR, then we must turn
to the results of a significant clinical trial conducted by the Intergroupe
· the role of Velcade® (bortezomib), Revlimid® (lenalidomide), and
Francophone du Myelome (IFM), a large clinical trials consortium in
experimental agents that target cell-signaling cascades or surface recep-
France with a long history of expertise in autologous stem cell trans-
tors as maintenance therapy.
plantation. The trial results were published in Blood in November 2006,
We encourage all myeloma patients to discuss the pros and cons of
with Dr. Michel Attal as chief author. The article is entitled "Maintenance
maintenance therapy in their own particular case with their oncologists
therapy with thalidomide improves survival in patients with myeloma."
and to consider participating in clinical trials that will help answer these
Patients were randomized two months after stem cell transplant to receive
important questions. mt
no maintenance, pamidronate only, or thalidomide plus pamidronate,
NLB UPDATE -- continued from page 12
GASTROINTESTINAL SIDE EFFECTS -- continued from page 13
Is there one simple recommendation you can make that would
healthcare team. We understand that some patients feel embarrassed to
help patients better tend to their overall health?
talk about constipation and diarrhea. We understand that nausea and vom-
If you wouldn't want your internist treating your myeloma, why would
iting are sometimes not reported immediately because patients believe
you want your myeloma specialist treating your hypertension or diabe-
this is part of the treatment and they try to cope on their own. "I did
tes? Doctors who keep up-to-date in their area of specialty may not be
not want to bother you," they say. But we are here to help our patients,
as current in new drugs or guidelines in other areas of medicine. Many
and adequate management of side effects ensures a better outcome
patients travel long distances to see myeloma specialists but, to improve
for them. mt
or maintain coordination of their overall health, they should also have a
local internist looking after them. mt
14
www.myeloma.org
Education & Awareness
spotLight on aDvocacy
Congress Busy with Myeloma Related Issues in 2008
By Christine Murphy, MA
While Congress focuses on issues such as the upcoming
Institute (NCI) would receive an additional $65 million on
Presidential election, the economy, the housing crisis, and
top of the $4.8 billion already appropriated in FY 2008.
the War in Iraq, other issues such as those of importance to the
The inclusion of these funds in a supplemental funding
myeloma community also received attention in the first half of
bill is extremely rare and illustrates the strength of support
2008. This is a summary of cancer related issues that Congress
that cancer research has in Congress.
worked on before adjourning for the Memorial Day Recess.
The funds for NIH are being added as part of a larger
Genetic Information Nondiscrimination
spending package for key domestic priorities. The full
Act Signed Into Law
Senate considered the bill during the week of May 19.
Christine K. Murphy, MA
Genetic information can no longer be used to deny someone
Because the President is opposed to the domestic spend-
Murphy Consulting LLC
health insurance or job opportunities under legislation passed
ing, it is likely that the bill will be challenged by his sup-
Arlington, VA
by the US House of Representatives and the Senate in late
porters in the Senate necessitating a 60 vote majority to
April 2008 and signed into law by the President. Representative Louise
pass the Senate.
Slaughter (D-NY ) first introduced a genetic nondiscrimination bill 12
IMF Cosponsors Briefing on Improving
years ago. The Genetic Information Nondiscrimination Act makes it illegal
Cancer Care
for a health plan or insurer to deny coverage or charge higher premiums
The International Myeloma Foundation, along with partners in the cancer
to a healthy person based solely on a genetic predisposition to a disease.
community, cosponsored a briefing on the importance of cancer care
Similarly, an employer cannot use genetic information in making hiring,
plans and cancer treatment summaries in guaranteeing high quality cancer
firing or promotion decisions.
care. The briefing encouraged Congress to forward HR 1078/S 2790, the
Kennedy and Hutchison Drafting
"Comprehensive Cancer Care Improvement Act". The Comprehensive
Comprehensive Cancer Bill
Cancer Care Improvement Act improves the coordination of all elements
Senators Ted Kennedy (D-MA) and Kay Bailey Hutchison (R-TX) are draft-
of cancer care, including quality cancer treatment and appropriate symp-
ing legislation that would impact all aspects of cancer care. The overall
tom management. A core provision of this bill would establish a new
objective of this legislation is to advance the continuum of cancer care,
Medicare service for cancer care planning which has been identified by
including research, education, prevention, detection, treatment, and
the Institute of Medicine as an element of quality cancer care for cancer
survivorship issues. Senators Kennedy and Hutchison have been working
survivors.
with the cancer community in the development of this legislation. The
Congressional attention for cancer issues (other than funding for impor-
Kennedy-Hutchison cancer bill is expected to be introduced in 2008.
tant cancer programs) will soon wane as the election draws closer. The
Access to Cancer Clinical Trials Act of 2008
IMF will continue to monitor these issues and push for Congress to
Introduced in the Senate
take action on myeloma specific issues before adjournment of the 110th
Congress. For more information on IMF's advocacy activities, please visit
On May 8, Senators Sherrod Brown (D-OH), Arlen Specter (R-PA), and
www.myeloma.org. mt
Sheldon Whitehouse (D-RI) introduced S 2999, the "Access to Cancer
Clinical Trials Act of 2008," a companion bill to HR 2676, which was intro-
*Routine patient costs are all items and services provided in the clinical
duced by Representative Deborah Pryce (R-OH) in 2007. The purpose of
trial that are otherwise generally available to a qualified individual, with
certain exceptions.
S 2999 is to prohibit a group health plan from:
(1) denying an eligible participant or beneficiary participation in clini-
cal trials related to the treatment of cancer that are federally funded or
Imagine Moving Forward
conducted under an investigational new drug application reviewed by the
is the theme of the
Food and Drug Administration (FDA);
IMF's myeloma bracelet. Wear one in honor, celebration, or in
memory of a loved one. When people ask you about it, you'll have
(2) denying (or limiting or imposing additional conditions on) the cover-
a perfect opportunity to spread the word about multiple myeloma.
age of routine patient costs* for items and services furnished in connec-
These bracelets are only $1 each in sets of 10. Youth bracelets are
tion with such participation; or
now available, so everybody
(3) discriminating against an individual on the basis of such
in your family who has been
participation.
touched by myeloma can wear
NIH Could Receive Extra $400 million
one! Order bracelets online at
in FY 2008
our website www.myeloma.org,
or contact Suzanne Battaglia at
The Senate Committee on Appropriations included $400 million for the
SBattaglia@myeloma.org or
National Institutes of Health (NIH) in the fiscal year (FY ) 2008 supple-
800-452-CURe (2873).
mental appropriations bill. With this increase to NIH, the National Cancer
800-452-CURE (2873)
15
Special Event
2008 imf support group LeaDers' retreat
By Paula Van Riper
InAugust1999,IthoughtIhadamusclestrain IMF listens to its membership with such sensitivity that it proactively
in my right leg. Instead, as an orthopedist
anticipates our needs even before they arise.
soon discovered, I had a large solitary plasmacy-
As at all the IMF events I have attended, the retreat's agenda was well
toma at the "neck" of my femur, where it meets
thought out, giving participants an opportunity to learn from some of the
the hip. I was in danger of fracturing my leg and
most experienced people in the field of myeloma. even when the IMF re-
having the myeloma cells enter my bloodstream.
examines topics from previous years, the information is always updated
Within five days I was in the hospital having the
and presented from a new perspective. It is always exciting to hear what is
tumor removed and my hip replaced.
happening in myeloma research and what is new in the clinical setting. Dr.
A couple of days after my surgery, I found the
Brian Durie and Dr. Rafael Fonseca provided us with valuable insights into
IMF through the Internet. I called the Hotline and, in that moment, my life
the scientific and clinical world of myeloma. Dr. Durie and Bonnie Jenkins,
changed. I was no longer alone. The IMF became my source of informa-
a nurse for more than
tion, inspiration, and education. The Foundation has been near and dear
20 years and a mem-
to me ever since, and I continue to embrace the IMF for taking me, and
ber of the IMF's Nurse
others like me, out of the darkness. With a positive attitude, I was walking
Leadership
Board,
within five days of the surgery, and I was soon back at work as Dean of
held an open discus-
Academic Services at Rutgers University.
sion about talking to
your doctor. Teresa
Three years later, my IgG climbed to a level that required treatment. Due
Miceli, another mem-
to chromosome 13 deletion, a single autologous transplant was unlikely
ber of the IMF's Nurse
to result in a durable remission, so I opted for an auto transplant followed
Leadership
Board,
by a series of mini-allogeneic transplants. It was after my first allo that I
covered the complex
attended my first IMF Patient & Family Seminar, and it was then that I
Dr. Durie and Bonnie Jenkins held an open
issue of treatment
made a deal with myself as soon as I felt better, I would start a myeloma
discussion about how to talk to your doctor
side effects.
support group in my area.
David Girard gave a hands-on
I approached the IMF for help with getting a group off the ground. Not
presentation of reflexology and as
only did I receive assistance but, even before my group was formed, I
well as a discussion of complementary
received an invitation to attend a Support Group Leaders Retreat. That
medicine. When he demonstrated the
wonderful experience gave me the huge confidence and the practical tools
techniques of reflexology, many of
I needed to get my group started. I knew that I had a great organization
the volunteers reported improvement
backing me every step of the way in my new endeavor. The first meeting of
in the way their feet and legs felt
the Central New Jersey Myeloma Support Group took place in July 2005,
afterwards. Both of David's sessions
with four people sitting around my kitchen table. My support group has
were very informative, and I came
since grown to 40 active members, and I have now attended four IMF
away with a better understanding of
Support Group Leaders' Retreats.
David Girard demonstrating
these areas.
reflexology
The ninth annual IMF Support Group Leaders' Retreat took place April
Maddie Hunter and
1113 in Tempe, AZ. The patient community had the largest representa-
Debbie exner co-
tion ever, with 70 leaders and a total of 125 participants from groups
presented a session
across the US, Canada, and europe.
entitled
"Patient
I remain in awe of how thoughtful and conscientious the IMF is in pro-
NOT Passive" to
viding training
help the partici-
and leadership
pants to be more
for the myelo-
fully engaged with
ma patient and
their medical team.
caregiver com-
The session includ-
munity. The IMF
ed demonstrations
helps us to start
Debbie Exner and Maddie Hunter co-presented a
of effective interac-
groups and to
session entitled "Patient NOT Passive"
tions and evaluation
maintain them,
of valuable phraseology that can be employed when dealing with medical
but what I find
professionals. It is possible to be polite while being persistent in pursuing
most remark-
the best possible medical care.
Susie Novis and some of the audience
able is that the
of support group leaders
Continues on next Page
16
www.myeloma.org
Support Groups
southeastern virginia muLtipLe myeLoma support group
Jerry Walton was diagnosed with myeloma
in a meeting while she was undergoing treat-
two years ago. His response to the diagnosis
ment out of town. In another, a member not
was to take action and, with help from the IMF,
ready to travel following a stem cell transplant
to launch the Southeastern Virginia (SeVA)
joined the discussion from her home over 100
Multiple Myeloma Support Group. "I hoped
miles away. "It was a real treat to be able to
that by coming together and supporting each
connect and extend our group support across
other on a personal level, we would help each
the miles," says Jerry. "We look forward with
other become more educated," says Jerry. The
great excitement about this new tool to bring-
group held the first of its monthly meetings in
ing myeloma experts and their knowledge into
August 2007, and Jerry's vision quickly began
our midst, and to staying in touch with mem-
to take shape. Group members exchange infor-
bers who are
mation, share experiences, participate in lively
receiving or
discussion, and provide support to one anoth-
recovering
er. Some SeVA meetings feature guest speakers who give presentations
from treatment out of the local area.
on various topics of interest to the group. "Some people say they live to
Thanks a million to the IMF for making
learn," adds Jerry, "As myeloma patients, we learn to live."
the SeVA acronym stand for more than
just SoutheasternVirginiA. It now also
Since its inception, SeVA has been serving patients and caregivers in the
stands for Superbly enhanced Vocal
Norfolk, Virginia Beach, and northeast North Carolina areas. Now, thanks
Access."
to the Polycom voice conferencing system provided by the IMF, the group's
mt
horizon has expanded immensely. Polycom technology has made it possi-
Editor's Note: This group meets the third Saturday of each month from
ble for speakers to address the group via long-distance discussions. Group
10am to noon at the Catholic Charities building in Virginia Beach, VA. For
meetings have also started to include some members who are unable to
more information, please visit SEVA's website at www.seva.myeloma.org or
be physically present. In one case, a group member was able to participate
contact Jerry Walton at jerryewalton@cox.net or 757-495-8432.
SGLR -- continued from page 16
The retreat introduced three technology-based initiatives that I am very
and ideas that may be new tome and my group that have already been
excited about. The Myeloma ManagerTM, a computer software tool, was
tested and refined by other group leaders.
developed by the IMF to help patients and caregivers navigate the seem-
After five years of drug-free remission, last summer I developed a tumor in
ingly unmanageable and complex information of various myeloma tests
my spine. With the help of radiation and lenalidomide, I am back to feel-
and treatment programs. It helps organize laboratory results and other
ing wonderful and I feel very blessed to be marking the eighth anniversary
medical information, and offers online support for this innovative tool.
of my diagnosis this August. The IMF has been an important partner in
The Myeloma Manager is something that can benefit every patient. The
my journey with myeloma. I have personally benefitted from the IMF's
vast majority of us are not medical professionals, but it is very important
efforts to bring information and hope to patients. Now, as a support group
for each of us to track our status with our disease. With the Myeloma
leader, I am honored to serve as a conduit between the IMF and to the
Manager, all one has to do is plug in the relevant numbers and see them
patient community.
converted into charts and graphs that plot the trend of your disease. Quite
literally, the Myeloma Manager gives us a picture of where our disease is
Fluid education, information, new tools and techniques, and camaraderie
going. Most doctors don't have the time to do that kind of tracking on
are what the IMF Support Group Leaders' Retreat program is all about. As
individual patients. The Myeloma Manager empowers patients to stay
in previous years, I returned home energized and excited about sharing
on top of the disease and to establish a more productive and dynamic
with my group what I learned at the retreat. I often say that myeloma is
dialogue with the doctors.
the best and the worst thing that has ever happened to me it has compli-
cated my life but it has also introduced me to the most wonderful people
Another technology-driven tool that the IMF has now made available to us
with whom I have developed amazing friendships that I would have never
is to set up support group websites. Most of us have no idea how to create
had if not for my diagnosis. There are people from all across the US, and
a website, and having a template and assistance with setting it up is most
some from Canada, who have become family to me. This is why instead
helpful. Some groups already have their own websites, but mine didn't, so
of saying "Why me?" I now say "Thank you." I would like to encourage all
I am happy to take advantage of this offer from the IMF.
myeloma group leaders to take part in the invaluable experience of the
The IMF has also created a web portal for support group leaders, which
IMF Support Group Leaders' Retreat. You and your group will be glad
serves as a mechanism to post and to share helpful information, including
you did. mt
programs that proved to be popular when presented to their groups. This
online forum facilitates communication and offers a library of resources
Editor's Note: The 10th annual Support Group Leaders' Retreat will take
place in Irving, TX, July 1012, 2009. For more information, please contact
for group leaders. I am very excited about having access to information
the IMF at TheIMF@myeloma.org or 800-452-CURE (2873).
800-452-CURE (2873)
17
International Affiliates
imf europe conDucts meetings in spain
TheIMFhostedits5thPatient&FamilySeminarinSpaininValenciaon
May 31, 2008. This was the first seminar held in Spain in a city other
than Madrid or Barcelona. The goal of the IMF europe program is to
expand the reach of its seminars to patients in all parts of the country.
Dr. Javier de la Rubia (University Hospital La Fé, Spain) hosted the Valencia
seminar. IMF Scientific Advisors Dr. Morie Gertz (Mayo Clinic, USA) and
Dr. Joan Bladé (University Clinic
of Barcelona, Sapin) also partici-
pated in the event. One hundred
patients and family members from
throughout western Spain attend-
ed the six-hour meeting.
The meeting was held at the
Gregor Brozeit, Dr. Javier de la Rubia, Dr. Joan Bladé,
Valencia Hilton and featured talks
Dr. Morie Gertz, and David Girard
by each doctor covering a spec-
trum of topics, including an intro-
"I found the patient reception very warm
Audience member asks question
duction to myeloma, when to
they were enthusiastic & inquisitive.
at the IMF Patient & Family Seminar
begin treatment, and managing
in Valencia
side effects. A panel discussion
It was a privilege to present to such
was followed by questions from the audience, then an hour of breakout
a committed group of patients."
sessions in which each doctor answered questions from attendees.
Dr. Morie A. Gertz
"My mother was diagnosed with myeloma four
The IMF also hosted doctors' meetings in Barcelona and Pamplona for
practicing hematologists and hematology residents. Dr. Bladé hosted a
years ago, and from the first moment our main
lecture in Barcelona at the University Hospital Clinic, which featured
source of education was the IMF website.
Dr. Gertz, and Dr. Felipe Prósper hosted a lecture in Pamplona at the
The scientific information was honest and easy
University of Navarra Hospital Clinic, which featured Dr. Gertz, Dr. de la
to understand. It was great to have the opportunity
Rubia, and Dr. Maria-Victoria Mateos (University of Salamanca, Spain). The
meetings offered comprehensive educational sessions covering the role of
to attend Valencia IMF Patient & Family Seminar."
novel therapies in the treatment of myeloma and amyloidosis. mt
Pachi Clemente, attendee
upDates from arounD the gLoBe
EMEA recommends new contraindication
TGA approves a supplemental filing
for Velcade®
for thalidomide
The European Medicines Agency (EMEA) has recommended that Velcade®
The Australian Therapeutic Goods Administration (TGA) approved a
(bortezomib) should not be used in multiple myeloma patients who are
supplemental filing granting Thalidomide Pharmion® marketing approval
diagnosed with either acute diffuse infiltrative pulmonary disease or
for use in combination with melphalan and prednisone for patients with
pericardial disease. The EMEA's Committee for Medicinal Products for
untreated multiple myeloma ineligible for high-dose chemotherapy.
Human Use (CHMP) concluded during its March 2008 meeting that the
Additionally, for the treatment of patients with untreated myeloma,
benefits of Velcade are greater than its risks, except in patients with acute
marketing approval was granted for thalidomide in combination with dex-
diffuse infiltrative pulmonary and pericardial disease. The CHMP therefore
amethasone for induction therapy prior to high-dose chemotherapy with
recommended contraindicating the use of Velcade for these patients. The
autologous stem cell rescue. This marketing approval represents the first
European Summary of Product Characteristics (SmPC) has been updated
oral cancer therapy ever registered for newly diagnosed myeloma patients
to reflect these two new contraindications. This change is limited to the
in Australia. mt
European label only. The US Package Insert is not affected and does not
contain a contraindication for acute infiltrative lung disease or pericardial
Editor's Note: The IMF continues to strive to find better ways to serve our
community wherever in the world it may be. If you have ideas to contribute
disease. The only contraindication in the US label is for those patients with
to our continued growth and development, please feel free to contact us at
hypersensitivity to bortezomib, boron, or mannitol.
TheIMF@myeloma.org or 800-452-CURE (2873).
18
www.myeloma.org
Patient & Caregiver Experience
e-patients: eQuippeD, enaBLeD, empowereD, anD engageD
By Joanna FitzPatrick
Youneverforgetthedayyou're
oncologist gave us several options
told. For me it was in the mid-
and, aided by the information I
dle of the afternoon on November
had garnered from the myeloma
4, 2003. My husband Jim walked
listserv, we chose to participate in
into my office and said, "I have
a clinical trial. Jim started treatment
some bad news." The expression
that day. eventually tandem stem
on his face revealed no news other
cell transplants followed his induc-
than he was tired, which had been
tion therapy.
a recent complaint. But at age
Jim and I had become what one of
60, wasn't he just getting older?
our listserv members called "e-pa-
"The lab tests from my physical
tients: equipped, enabled, empow-
show cancer cells in my blood!
ered, and engaged." The myeloma
The doctor wants me to make an
online support group became my
appointment with a hematologist-
virtual community. No one is identi-
oncologist immediately."
Jim and Joanna FitzPatrick
fied by age, race, gender, income or
"A what? And you have what?"
educational level, but we all come
Suddenly my literary vocabulary seemed very inadequate. I needed medi-
together in a web of love, united in our fight against myeloma, and deter-
cal information. Before, I would have run to a library, but now I ran to
mined to find its cure.
the Internet. I had just become an e-patient. Jim, of course was the real
Mike Katz, a myeloma patient himself, started this listserv in the mid-
patient; I became the caregiver. But just like e-mail and e-commerce, the
nineties with fellow myeloma patient, June Brazil. "It seemed like a logical
information I started accessing was all on the Internet. I perched my hands
extension to have a 24/7 online resource for people who needed help
over my laptop computer's keyboard and typed "multiple myeloma" into
fighting their disease," he says. "The International Myeloma Foundation
Google's search bar. Hundreds of files about this rare cancer appeared.
(IMF) was very involved from the beginning, hosting the listserv on its
Fifteen minutes later I had to close my office door as I read through teary
web server, providing the software and giving us input on medical issues."
eyes: "A rare disease of malignant plasma cells that, in time, takes over the
In 1998 the site became myeloma@listserv.acor. I will never forget what
bone marrow. There is no cure." This was heartbreaking, but I returned to
a difference it made for me the first time I connected to this virtual com-
my online research knowing that only with knowledge could I gain some
munity and I am indebted to Mike, June, and the IMF for their generous
control over the situation. But then... how to sift through all this medical
contribution.
information? How to know what was reliable? Who were the real experts?
After I had a basic medical understanding of multiple myeloma from
Who were the quacks?
attending Jim's many doctor appointments and from my own online
This is where the myeloma listserv came in. I needed anecdotal advice from
research, I felt confident to help others on the listserv, particularly the
people who personally knew about this disease, the patients themselves
newly diagnosed. Online cancer communities also offer information
and their caregivers. An online myeloma support group I found through
on Medicare and disability coverage, prescription discounts, treatment
the Association of Cancer Online Resources (ACOR) was the answer. This
choices, side effects from chemotherapy, and new clinical trials. I con-
website offers access to 159 mailing list communities called listservs that
nected with my online community in a way I could never have connected
provide support and information to people affected by cancer and related
with my family and friends. Online we discuss vivid details of disease that
disorders. I registered my name and password on the myeloma listserv of
might make the uninitiated squeamish.
1400 participants, becoming 1401.
Yes, there is bliss in ignorance and sometimes I wish I knew less, but as
At first I was shy like anyone joining a new community who doesn't know
Francis Bacon so aptly said, "knowledge is indeed power." Online cancer
anyone. In the online listserv vernacular it's called "lurking." Then, too
support groups are powerful and necessary forums for cancer patients
anxious to wait two weeks before our first oncologist consultation, I cop-
and their families. An informed e-patient online group gives patients and
ied Jim's diagnostic lab reports into the listserv address and hit "SeND."
families options that never existed before Internet access, and the emo-
Out it went to fourteen hundred strangers. An hour later I had received a
tional support of these groups makes the worse days tolerable and the
dozen compassionate and knowledgeable responses from myeloma care-
best days a celebration for those of us who must live with cancer. mt
givers and patients! After reading these reassuring messages, many from
cancer survivors who have defied the statistics, I felt a surge of hope.
Editor's Note: If you are a myeloma patient or caregiver, and you would
like to share your story with readers of Myeloma Today, please email
At our first meeting, our oncologist told us that Jim's cancer was aggres-
Marya Kazakova at mkazakova@myeloma.org or write to the IMF at
sive and needed immediate treatment. A decision had to be made. The
12650 Riverside Drive, North Hollywood, CA 91607.
800-452-CURE (2873)
19
Member Events
imfers raise funDs to Benefit myeLoma community
By Suzanne Battaglia
Kallen Dahlke Cell Phone Drive
which this project would not have been so successful. My aim was to find
When Kallen Dahlke's mother was diagnosed with multiple myeloma
a way to benefit myeloma patients in honor of my mom but, unexpectedly,
the day after Thanksgiving 2007, a relative contacted the IMF to order
this experience has also become part of my family's healing process."
InfoPacks for the entire family.
Music Against Myeloma
The packet contained a leaflet
On April 24, the third annual Music Against Myeloma event took place at
with ideas for raising funds to
the Cutting Room, a popular club in the heart of New York City. The event
support myeloma research and
was conceived by Slava Rubin in memory of his father, Mark Rubin, who
other IMF programs. Kallen
passed away in November of 1993. Music Against Myeloma is Slava's way
chose to tackle cell phone collec-
to honor his dad while raising awareness and funds for myeloma research.
tion as her project, but decided
not to share this with her family
Music Against Myeloma tickets
right away. "I was worried about
were sold for $30 in advance
letting them down if the project
and $50 dollars at the door,
didn't succeed, so I wanted to
Chris and Kallen Dahlke
and offered the 200 attend-
make sure I could pull this off," says Kallen. First, she contacted the school
ees who gathered to support
board for permission to place cell phone collection boxes in a local high
the event lots of value for the
school. Next, Kallen solicited prizes to be awarded as part of her drive,
money.Thanks to Red Bull
including a flat-screen television donated by Best Buy and gift certificates
and Budweiser, drinks were
to a local hair salon. Then she brought her family and friends aboard.
free. Guests who wanted to
Thomas Ian Nicholas,
keep their taste buds happy
Suzanne Battaglia, and Slava Rubin
In January, volunteers started collecting phones and distributing fly-
enjoyed delicious cupcakes baked by Sugar Sweet Sunshine and delectable
ers about the project. Collection boxes were placed at the Port Huron
assorted cheeses donated by Murray's. And there was live music all night
Northern High School, where Kallen's father is the Principal, and several
long from performers including Lost in October, Holtz, Amanda Thorpe,
students took a personal interest in the project. Two weeks later, 727 cell
Rachel Platten, Avi Wisnia, and Thomas Ian Nicholas. Tony Orlando was
phones had been collected.
also on hand to sing a couple of favorites. Guests also had the opportunity
"I am very proud of everyone who supported this project. It felt so good
to bid on incredible sports memorabilia presented by Grandstand Sports,
to know how many people cared," says Kallen. "My family and friends, the
and to buy comfy socks donated by Pralin.
high school students, coworkers, and other members of the local commu-
This year, Mike Katz, IMF director and myeloma patient, attended the
nity helped out tremendously. I am grateful for their participation, without
event and spoke to the crowd about the impressive progress that has been
made in myeloma research and treatment since Mark Rubin's diagnosis.
More advances in the field are forthcoming, and Music Against Myeloma
Meet the new Director of Member Events
is committed to helping facilitate this process.In its three years,the event
Suzanne Battaglia has been promoted to
has raised over $45,000 for myeloma research, thanks togenerous spon-
the position of Director of Member events.
sors, incredible music talent, and a host of amazing people dedicated to
Suzanne joined the IMF in January 1997,
its success. We all look forward to the day when Music Against Myeloma
bringing with her 20 years of experience in
celebrates this disease becoming a thing of the past.
theatrical and event production. As Producer
of Special events, she spearheaded the IMF's
"JC" Golf Tournament
first four Gala celebrations, as well as the
On May 17, the 9th annual "JC" Golf Tournament was held at the Wapicada
Robert A. Kyle Lifetime Achievement Award
Golf Course in St. Cloud, MN. The event honors the memory Janet "JC"
dinners. Suzanne created the successful
Johnson. The five-person scramble format was enjoyed by 160 golfers,
"Mail For The Cure" campaign, and has
and was followed by tournament prizes, dinner, a silent auction, and a
worked on a broad variety of fundraisers across the US. "For the last
dance featuring the band "Canoise." Green Mill Restaurant and Short Stop
several years, I have focused on growing the program of grassroots
Custom Catering returned as the event's major sponsors and provided
events that are highly successful in raising public awareness, as well as
dinner for all participants.
funds for myeloma research and other IMF programs," says Suzanne.
The winning team, comprised of five men from the Zins family, shot 16
"I really enjoy my one-on-one relationships with IMFers, and I try to
under! The Zins family was instrumental to organizing the first the "JC"
personally attend as many events as possible. It is very rewarding to see
golf tournament 10 years ago, and Larry Zins, Bob Zins, and Mary Zins Klis,
our members become empowered and, in turn, to empower others in
along with other board members, have kept things rolling ever since. "For
their local communities." Please join us in thanking her for the many
us, this event is definitely a family affair, "says Mary Zins. "My parents and
years of dedicated service to myeloma patients and caregivers. Suzanne
all non-golfing siblings and spouses attend the dinner, and the rest of us,
can be reached at sbattaglia@myeloma.org.
Continues on next Page
20
www.myeloma.org
Investing in the Future
imf forms the founDers' circLe
Major donors recognized at inaugural Summit
By Heather Cooper Ortner
Torecognizeandthankthemajordonorswhohavehadasignificant Dr.BrianVanNess,IMFScientific
impact on the activities of the IMF, the Foundation has formed donor
Advisor and co-director of the Bank
recognition circles. This year, we also created a Summit to recognize those
On A Cure® DNA research initia-
donors at the Founders' Circle level and above. All IMFers invited to join
tive, and Dr. Howard Urnovitz,
the Fouders' Circle Summit have made significant donations to support
an expert in the field of genomics
our mission of improving the quality of life of myeloma patients while
and chronic disease and CeO and
working toward prevention and a cure.
co-founder of Chronix
Biomedical Inc.
Participants in the inaugural Founders' Circle Summit
have an exclusive and unique opportunity to get
The inaugural Founders'
a behind-the-scenes look at what is happening in
Circle Summit took
the world of myeloma research and where the new
place on June 20-21 in
discoveries are likely to take us in the near future.
Los Angeles, CA. Twenty
During a full day of
major donors from
off-the-record brief-
across the US attended
ings,
participants
in person, and several
Dr. Howard Urnovitz
were given an over-
other members joined
view of the ground-
the meeting via telephone. Participants were treated to a
breaking
progress
Dr. Brian Van Ness
delightful welcome dinner, followed the next day by intimate
being
made
in
discussions about research supported by the IMF. The Summit
research labs around the world.
concluded with a thank-you dinner.
The myeloma experts on hand included
The Founders' Circle Summit will become an annual IMF event, with the
Dr. Brian Durie, Chairman of the IMF and
next meeting already scheduled tentatively for May 12, 2009. mt
Dr. Brian Durie
member of its Scientific Advisory Board,
MEMBER EVENTS -- continued from page 20
To date, thanks to sponsors, donors, prize contributors, and volunteers,
the tournament has raised over $152,000 to benefit IMF programs.
Join Us
We are grateful to all IMFers who contribute their time, imagination, and
hard work to benefit the myeloma community. Our FUNdraising program
provides you with the tools, assistance, and expertise to make your event
a success. Choose an established event model or create your own
no idea is too large or too small. Join us in working together toward
our common goal... a CURe. Please contact me, Suzanne Battaglia, at
sbattaglia@myeloma.org or 800-452-CURe (2873). mt
UPCOMING MEMBER EVENTS
September 6, 2008 "Heuer Golf Tournament" Caledonia, NY
Contact: Nancy Heuer, 585-538-4333 or nheuer@cob.rit.edu
The winning team: Larry Zins, Scott Zins, Jeff Zins, Jim Zins, and John Zins
September 26, 2008 "Bertino Beer & Wine Tasting"
Huntingdon Valley, PA
including all the kids, are out on the golf course. Our aunts and uncles and
Contact: Kathy Bertino, 610-905-0310
cousins, plus all our friends, participate in some way. There are several other
November 1, 2008 "Evening 4 A Cure" Lancaster, NY
families with similar participation, which is why this tournament is so spe-
Cocktails, Chinese, Silent and Live Auctions, Dinner Fox Valley Club
cial to so many of us. It's about friends and family having a great time for a
For details & info about attending, contact: Jerra Barit 716-741-9351
great cause."
800-452-CURE (2873)
21
Staff Updates
Cel Phones for a Cure
Missy Klepetar
After several years working in education management
at UCLA Medical Center and Pepperdine University
School of Law, Missy Klepetar joined the IMF staff as
a Development Assistant. Starting August 2006, she
supported the day-to-day needs of the Development
department and, in addition, managed all registra-
tions for the IMF Patient & Family Seminar program.
In May 2008, Missy made the transition to the IMF
Hotline as the Hotline Associate. To prepare for her new role at the IMF
helping answer your questions about myeloma she has received extensive
Put your old cell phone to good use!
training from Hotline Coordinators Debbie Birns, Nancy Baxter, and Paul
Donate your old cell phone and become part of finding the cure.
Hewitt. To contact Missy, please email mklepetar@myeloma.org.
The IMF has partnered with a cell phone recycling organization
Rachael Coffey
that makes a donation for every cell phone we turn in. Current cell
phone models are worth up to $20 each. Many older models are
Rachael Coffey holds a degree in Public Health
worth $1 to $10.
education. She has worked for the Northern Michigan
Hospital Community Health education Center and
You can help the IMF continue its research and programs. You can
has served as an executive Assistant in the Department
help our environment. You can provide cell phones to underserved
of Medical Affairs at Aptium Oncology Inc. in Los
communities. And it's as easy as sending us your old cell phones.
Angeles. In July 2007, Rachael joined the IMF as an
For more information about how to turn your old cell phone into
Administrative Assistant. She is in the office part-time
a contribution (or how to set up an IMF collection program at your
as she is currently working on a Master's degree in
business or school), call Kemo Lee at at 800-452-CURe (2873).
Nursing at UCLA. At the IMF, Rachael assists David Girard with the Bank On
A Cure® project by helping to manage the database, prepare weekly updates,
Or, you can mail your phones direct to the IMF:
perform survey intake, coordinate mailings, and answer questions from call-
International Myeloma Foundation
ers. She also works with Lisa Paik on submissions of manuscripts for publica-
c /o Cell Phones for a Cure
12650 Riverside Drive, Suite 206
tion. For the IMF Patient & Family Seminar program, Rachael prepares the
North Hollywood, CA 91607-3421.
attendee materials. To contact Rachael, please email rcoffey@myeloma.org.
2008/2009 IMF Calendar of Events
Aug 89
IMF Patient & Family Seminar Short Hil s, NJ
Oct 18
Regional Community Workshop longview/Gladewater, TX
Aug 2223
IMF Patient & Family Seminar San Diego, CA
Oct 2026
Myeloma Awareness Week NATIONWIDE
Sept 2
IMF Patient & Family Seminar Berlin, GERMANY
Oct 25
Regional Community Workshop Twin Cities, MN
Sept 6
CMG Annual Patient Day Podebrady, CzECH REPuBlIC
Oct 29Nov 2 Southwest Oncology Group (SWOG) meeting Chicago, Il
Sept 12
Regional Community Workshop Honolulu, HAWAII
Nov 1416
Eastern Cooperative Oncology Group (ECOG) meeting Ft. lauderdale, Fl
Sept 1819
Biennial 5th Annual International Symposium on Clinical
Nov 22
4th Annual Southwest Symposium Phoenix, Az
Applications of Serum Free light Chain Analysis Bath, uK
Dec 69
American Society of Hematology (ASH) meeting San Francisco, CA
Oct 11
Regional Community Workshop KC, MO area, KS
2009
Oct 13*
Regional Community Workshop St. Charles, MO *(date may change)
April 1718
IMF Patient & Family Seminar San Francisco, CA
Oct 10
IMF Patient & Family Seminar Paris, FRANCE
July 1012
Support Group leaders Retreat Dal as, TX
Oct 17
IMF Patient & Family Seminar Rome, ITAlY
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.
S
Honorary Co-Chairs
Irena & Mike Medavoy · Julie Chen & Leslie Moonves
A
Chair
Loraine Boyle
&
Honorary Committee
Kevin & James Abernathy
present
V
Alec Baldwin
Candice Bergen
Halle Berry
InTERnATIOnAL MyELOMA FOunDATIOn
Lisa Birnbach
E
Ruth & Jake Bloom
2nd Annual Comedy Celebration
Lorraine Bracco
Kim Cattrall
T
Blythe Danner
Benefiting the Peter Boyle Memorial Fund
Lisa Doty & Stu Smiley
Caroline Ducrocq & Howard Hesseman
Hosted by
Andrea Eastman
H
Susie Essman
Ray Romano
Marc Forster
Paula & Peter Gallagher
Featuring
Ronda Gomez-Quinones & Howard Zieff
E
Carl Gottlieb
JEFF GaRLIn, PatRIcIa HEaton, RoBERt KLEIn,
Robin Green & Mitchell Burgess
Deborah & Allen Grubman
DoRIs RoBERts & FRED WILLaRD
D
Mariska Hargitay
Additional performances to be announced
Patricia Heaton & David Hunt
Michael Keaton
Robin Leach
Saturday, november 15, 2008 6:00pm
Dr. Stuart Lerner
Alex Meneses
The Wilshire Ebell Theatre & Club Los Angeles, California
A
Jenny & Robert Morton
Annette O'Toole & Michael McKean
Diane Passage & Ken Starr
For information about
T
Chynna Phillips & William Baldwin
Doris Roberts
Anna & Ray Romano
sponsorship opportunities,
please call (818) 487-7455 or
E
Jane Rose
Janet & Marvin Rosen
Monica & Philip Rosenthal
email: events@myeloma.org
!
Chrisann Verges & Ricky Jay
Mary & Fred Willard
Alfre Woodard & Roderick Spencer
Committee in formation as of July 15, 2008
International Myeloma Foundation
NON-PROFIT
Foundation
12650 Riverside Drive, Suite 206
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
yeloma
U.S.A.
M
www.myeloma.org
PAID
N. Hollywood, CA
(800) 452-CURE (2873)
PERMIT NO. 665
Change Service Requested
International
©2008,
U.S.A.in
Printed
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.