Myeloma
Today SPRING2010
Volume 8 Number 2
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
Scientific & Clinical News
Profiles in the News
Prof. Herve Avet-Loiseau of the Institute de
Daniel Navid has joined the IMF as Senior Global
Biologie in Nantes, France, discusses the impact
Analyst. He will assist in the strategic planning, imple-
of cytogenetics on overall and event-free survival
mentation, and annual evaluation of an international
in myeloma. Until now, there has been no large-
program for the IMF that aims to enhance myeloma
scale analysis of molecular features linked to the
awareness and patient education, and improve diagno-
International Staging System (ISS) of myeloma.
sis and access to effective therapies. PAGE 4
In the current project, the International Myeloma
Working Group is looking at combining the
ISS prognostic model, which is based on 2m
Amy Weiss has joined the IMF Board of Directors. She
and albumin levels, with cytogenetics, especially fluorescence in situ
has committed to work on behalf of the IMF and do all
hybridization. PAGE 7
she can to help find a cure for myeloma in her husband's
lifetime.
Dr. Shaji Kumar of the Mayo Clinic in Rochester,
Ms. Weiss is an attorney who has worked for Walt Disney
MN, talks about the place of autologous stem cell
Television and Columbia Tri-Star Television business
transplantation (SCT) in the era of novel agents in
affairs. In 1999, she joined Brillstein Entertainment
myeloma. SCT has been an integral part of myelo-
Partners (then Brillstein-Grey Entertainment), where she
ma therapy since randomized trials demonstrated
works closely with top performers, writers, and produc-
improved survival for SCT compared to conven-
ers in the entertainment industry. PAGE 5
tional therapy. Investigators at the Mayo Clinic
reviewed the outcome of 410 patients and studied
Yolanda Brunson-Sarrabo was diagnosed with myeloma
the differences in efficacy between the upfront and
in 2008, when an annual blood test showed an elevated
delayed transplant groups. PAGE 9
protein level. She was 37 years old. Reaching out for
an expert opinion to Dr. Robert A. Kyle at the Mayo
Supportive Care
Clinic prevented Ms. Brunson-Sarrabo from starting
anti-myeloma treatment prematurely. After keeping her
IMF Hotline Coordinators answer
diagnosis private even through radiation for a painful
a question about the safety of
solitary plasmacytoma, Ms. Brunson-Sarrabo now shares the story of the
using gadolinium, a contrast agent
personal and medical challenges of her myeloma experience. PAGE 17
injected into the body and taken
up by active myeloma lesions, in
Also in this issue...
magnetic resonance imaging (MRI)
tests. An MRI test is useful in assessing the disease state of a patient with
Dear Reader by IMF president Susie Novis PAGE 3
myeloma, but gadolinium is potentially toxic to the kidneys, and there
Letters to the IMF PAGE 4
has been some debate regarding the wisdom of using gadolinium in
myeloma patients because many have kidneys that are compromised by
News & Notes PAGE 6
their disease. PAGE 13
Support Group People Helping People PAGE 9
Spotlight on Advocacy IMF Launches Major New Initiative PAGE 11
LOOKING FOR A LOCAL MYELOMA SUPPORT GROUP?
International Affiliates Report from IMF Japan PAGE 14
If you are interested in joining a support group, please visit our website
Member Events raise funds to benefit the myeloma community PAGE 15
at www.myeloma.org or call the IMF at 800-452-CURE (2873).
2010 IMF Calendar of Events BACK COVER
This issue of Myeloma Today is supported by
Binding Site, Celgene Corporation, Millennium: The Takeda Oncology Company, and Onyx Pharmaceuticals.
Inter
P
nationallaceholder
Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Michael S. Katz
Dr. Edith Mitchell
Matthew Robinson
Allan Weinstein
Loraine Boyle
Benson Klein
Charles Newman
E. Michael D. Scott
Amy Weiss
Mark Di Cicilia
Dr. Robert A. Kyle
Susie Novis
Igor Sill
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Y.C. Chen, Republic of China
Tadamitsu Kishimoto, Japan
James S. Malpas, England
Ian Franklin, Scotland
Ian MacLennan, England
Scientific Advisors
Raymond Alexanian, USA
Rafael Fonseca, USA
Raymond Powles, England
Kenneth C. Anderson, USA
Gösta Gahrton, Sweden
S. Vincent Rajkumar, USA
Michel Attal, France
Morie A. Gertz, USA
Donna Reece, Canada
Hervé Avet-Loiseau, France
John Gibson, Australia
Paul Richardson, USA
Dalsu Baris, USA
Hartmut Goldschmidt, Germany
Angelina Rodríguez-Morales, Venezuela
Bart Barlogie, USA
Roman Hajek, Czech Republic
David Roodman, USA
Régis Bataille, France
Jean-Luc Harousseau, France
Jesús San Miguel, Spain
Meral Beksaç, Turkey
Joy Ho, Australia
Orhan Sezer, Germany
William Bensinger, USA
Vania Hungria, Brazil
Kazayuki Shimizu, Japan
James R. Berenson, USA
Sundar Jagannath, USA
Chaim Shustik, Canada
Leif Bergsagel, USA
Douglas Joshua, Australia
David Siegel, USA
Joan Bladé, Spain
Michio M. Kawano, Japan
Seema Singhal, USA
Mario Boccadoro, Italy
Henk M. Lokhorst, The Netherlands
Alan Solomon, USA
J. Anthony Child, England
Sagar Lonial, USA
Pieter Sonneveld, The Netherlands
Raymond L. Comenzo, USA
Heinz Ludwig, Austria
Andrew Spencer, Australia
John Crowley, USA
Jayesh Mehta, USA
A. Keith Stewart, USA
Franco Dammacco, Italy
Håkan Mellstedt, Sweden
Guido J. Tricot, USA
Faith Davies, England
Giampaolo Merlini, Italy
Benjamin Van Camp, Belgium
Meletios A. Dimopoulos, Greece
Gareth Morgan, England
Brian Van Ness, USA
Johannes Drach, Austria
Nikhil Munshi, USA
David Vesole, USA
Brian G.M. Durie, USA
Amara Nouel, Venezuela
Jan Westin, Sweden
Hermann Einsele, Germany
Antonio Palumbo, Italy
Dorotea Fantl, Argentina
Linda Pilarski, Canada
Headquarters
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607-3421 USA
Tel: 818-487-7455 or 800-452-CURE (2873)
Fax: 818-487-7454
Email: TheIMF@myeloma.org
Web: www.myeloma.org
IMF Staff
Executive Director
David Girard (dgirard@myeloma.org)
Chief Financial Officer
Senior Global Analyst
Senior Vice President,
Vice President,
Vice President,
Jennifer Scarne
Dan Navid
Strategic Planning
Development
Clinical Education & Research Initiatives
(jscarne@myeloma.org)
(dnavid@myeloma.org)
Diane Moran
Heather Cooper Ortner
Lisa Paik
(dmoran@myeloma.org)
(hortner@myeloma.org)
(lpaik@myeloma.org)
Database & Inventory Control
European Programs
Development Associate
Betty Arevalo (marevalo@myeloma.org)
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Randi Liberman (rliberman@myeloma.org)
Director, Communications & Public Policy
Director, Support Groups Outreach
Development Intern
Arin Assero (aassero@myeloma.org)
Kelly Cox (kcox@myeloma.org)
Kerri Lowe (klowe@myeloma.org)
Accountant
Hotline Coordinator
Publication Design
Sylvia Baca (sbaca@myeloma.org)
Paul Hewitt (phewitt@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Director of Member Events
Meeting & Event Services
Data Specialist
Suzanne Battaglia (sbattaglia@myeloma.org)
Spencer Howard (showard@myeloma.org)
Selma Plascencia (splascencia@myeloma.org)
IT Consultant
Publications Editor
Advocacy Assistant
Zsolt Bayor (zbayor@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
Meghan Pullarn (mpullarn@myeloma.org)
Hotline Coordinator
Hotline Associate
Webmaster
Nancy Baxter (nbaxter@myeloma.org)
Missy Klepetar (mklepetar@myeloma.org)
Abbie Rich (arich@myeloma.org)
Hotline Coordinator
Regional Co-Director, Support Groups SE
Regional Director, Support Groups NE
Debbie Birns (dbirns@myeloma.org)
Andrew Lebkuecher (alebkuecher@myeloma.org)
Robin Tuohy (tuohy@snet.net)
Regional Co-Director of Support Groups SE
Specialty Member Services Coordinator
Joanie Borbely (jborbely@myeloma.org)
Kemo Lee (klee@myeloma.org)
2
www.myeloma.org
A
Pla
Message ceho
from lder
the President
Dear Reader,
In this issue you will find an important article in the Education &
· The elimination of "pre-exist-
Awareness section, "Spotlight on Advocacy." Why am I pointing this out
ing conditions" as a barrier to
to you? Because I want you to get involved with the IMF Campaign on
health care coverage
Health Reform, which focuses on the most essential issues that cancer
· The elimination of annual
patients are facing. And, quite frankly, we need your help. This is the
and lifetime caps on insur-
critical moment when we still have the opportunity to make a change.
ance coverage
If we let it slip by, we may not have another chance for decades. If we
· Closing of the Medicare
were in Vegas, and those were the odds, we wouldn't want to make a
"donut hole"
bet like that.
· Continued investment in
research and innovation to
This issue is not blue or red, left or right. This is about people and our
address the needs of those
right to very basic and extremely important improvements in care.
with all deadly diseases
These changes aren't going to happen on their own. We all need to come
I've been there, caring for a loved
together and get involved. It's time to stop complaining and get active. If
one with myeloma. I've been vic-
not you who? If we're not willing to do it on our own behalf, how can
timized by the system, and I've been fighting the system on your behalf
we expect someone else to do it for us? The truth that is the easiest thing
ever since. Trust me, the time to act is now!
to do is nothing. When you do nothing you get nothing. Sadly, Congress
is famous for this. This time, don't let them off the hook. They work for
I know your strength and your passion, and I've seen how much you
us, so let's get them working on what matters most to us!
care. We're all highly motivated, so let's not let this moment pass.
Together we can move mountains!
Historically, change happens when average Joes and Janes (that would
be you and me) decide enough is enough and come together and take
Warm regards,
action that results in significant change.
Susie Novis
These are the essential needs for the entire cancer community, and
Editor's Note: To read the "Spotlight on Advocacy" column, please turn to
here's what we're asking for:
page 11.
· Affordable access to basic and catastrophic health care coverage for
as many Americans as possible
IMF WELCOMES DANIEL NAVID
TheIMFispleasedtowelcomeDaniel sispatients,whichhehelpedestablishasaninternationalorganizationin
Navid as Senior Global Analyst. Mr.
Switzerland and for which he served as interim Chief Executive Officer.
Navid will assist in the strategic plan-
Between 2001 and 2009, Mr. Navid served as the first Chief Executive
ning, implementation, and annual evalu-
Officer for the International Osteoporosis Foundation, a nongovernmen-
ation of an international program for
tal organization with almost 200 member societies in over 90 countries.
the IMF that aims to enhance myeloma
Prior to that, he served for several years as a diplomat in the United
awareness and patient education, and
Nations, served as the First Secretary General to the Convention on
improve diagnosis and access to effective
Wetlands of International Importance, and worked as a legal officer and
therapies. He will oversee and partici-
Executive Officer at the International Union for Conservation of Nature
pate in selected activities in areas of his
and Natural Resources. Mr. Navid has provided advisory services to
expertise, and will play a definitive role
numerous governments in the drafting of legislative and policy instru-
in developing partnerships with industry, national societies, and govern-
ments including those of Cyprus, Eritrea, India, Japan, Kenya, Laos,
ment agencies.
Thailand, and Zimbabwe.
Mr. Navid is an American lawyer who has been based in Europe for 35
Mr. Navid received his BA degree with distinction in Political Science
years; the first six years in Germany and the following 29 in Switzerland.
from the University of Michigan - Ann Arbor and his Juris Doctorate
He has extensive experience in the fields of international law, diplomacy,
degree from Northwestern University (Chicago, IL). He is a member of
capacity building, and management in the environment, development,
the Bar of the State of Illinois and has served on the Board of several
and health fields. Mr. Navid's most recent client has been the Fragility
foundations and organizations in the United States and abroad. MT
Fracture Network, a scientific society dedicated to supporting osteoporo-
800-452-CURE(2873)
3
Let ers to the IMF
IMF Hotline
Missy,
I wanted to send a quick note after corresponding, then speaking, with
I just wanted to thank for all your help last week. You were very patient
Debbie Birns of the IMF Hotline. I had written your organization hoping
and compassionate during a very difficult time. I also received the IMF
to get some advice not on my myeloma per se, but on the increasing num-
Info Pack yesterday. I pray that this will be a success story for the books!
ber of side effects I have been experiencing, and their similarly increasing
Nicole O'Hara
severity. I wrote to a number of organizations focused in various ways
on myeloma and attendant health issues. All replied, but none with the
Thanks, Debbie!
thoroughness, patience, depth of knowledge, concern, and sheer tenacity
Your response was very thorough and extremely helpful, and the table you
on my behalf, as did Ms. Birns of the IMF.
referred me to was exactly what I was looking for. It is so helpful to know
the results of current research and the general consensus of the Scientific
I will not elaborate on information and the advice provided, except to say
Advisory Board of the IMF. It would take me forever to find all the info on
that these were extremely helpful and directly on point. Ms. Birns wrote
my own; I really appreciate your taking the time to provide me with such
to me; called saying that in order to better serve me that I should call; and
great info! I wish I had known about the IMF when I was first diagnosed.
took said call immediately and with full attention and professionalism. She
It would have saved me a lot of stress, as I ended up with an oncologist
asked numerous very relevant questions and used my answers to suggest
who knew very little about myeloma (I have since changed doctors).
both some specific explorations and further questions I might address,
I can't believe the quality of the responses I get from the IMF Hotline
and made several recommendations for me to share with my medical
to my questions sometimes better answers than my oncologist gives.
providers. Ms. Birns repeatedly advised me NOT to rush off and act on
You are such a great resource and I'm so glad I found you!
information and guidance provided, but rather to fold this into conversa-
tions with the doctors and others treating me, and with whom I consult.
Kris Grandinetti
Following my several contacts with Debbie, and based upon information
My husband was diagnosed with myeloma three years ago, and I've taken
she provided for me to further research, I switched to a primary provider
advantage of many of the IMF's services: the website, Patient & Family
who is wonderful and under whose care I have also changed my entire
Seminars, and publications. I had my first opportunity to use the IMF
treatment regimen to one which has elevated my life quality significantly
Hotline yesterday and talked to Paul Hewitt about something that my
and which, thus far, has been most effective. This would not have hap-
husband's doctor had said that scared me, but I didn't want to talk to
pened without the IMF and Debbie's pro-active approach. My contact with
my husband about it and scare him, or talk to the doctor in front of him.
Ms. Birns, and therefore with the IMF, was the single best of its kind I can
Paul was a formidable library of information, and I got exactly the pieces
recall making in this or any other context. She, and your organization, are
I needed. The information was so specific and helpful that I hope the
greatly to be commended, hopefully to be emulated.
doctors know it, too. What a resource!!!!!!! Kim McLaughlin
David C. Miller
Dear Nancy:
If you would like to share your thoughts with the IMF or with readers
Thank you so much for your prompt, thoughtful response to my questions
of Myeloma Today, or if you wish to suggest or contribute future content
about my husband's condition. The books you sent were great and I now
for this newsletter, please contact:
understand myeloma better than I did before. It is a scary thing when you
Marya Kazakova Publications Editor
feel like you are alone in making treatment decisions and it is wonderful
International Myeloma Foundation
to know someone is out there who can help. You have no idea how much
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607
I appreciate your support.
mkazakova@myeloma.org
Pat Laas
WHAT DO YOU GET AT AN IMF PATIENT & FAMILY SEMINAR?
Education · Access to Experts · Camaraderie
Topics Covered
· What's New in Myeloma? · Ask-the-Expert
· Managing Side Effects · How to be a Better Patient
· Frontline Therapy · Transplant · Bone Disease
· Maintenance Therapy · Relapse · Novel Therapies
Go to our website
Regional Community Workshops (RCW)
If you cannot get to a P&F Seminar, consider attending
www.myeloma.org
a Regional Community Workshop. These half-day meetings
and click on the
provide Education, Access to Experts, and Camaraderie.
"meetings & events"
Registration is free but you must register. It's a great way to
learn from myeloma experts, as well as share experiences and
tab for more details, the
gain strength from others in the IMF family. Find more details
most up-to-date faculty, hotels
about the next RCW near you at our website.
and registration information.
4
www.myeloma.org
Board of Directors
THE IMF WELCOMES ENTERTAINMENT INDUSTRY EXECUTIVE
TO BOARD OF DIRECTORS
Myeloma Today in conversation with Amy Weiss
Recently, you accepted the invitation to become an
and we need to raise public awareness. So, when I was
IMF Director. Why did you choose to join the Board?
asked to co-chair the 2009 Annual Comedy Celebration
I am honored by the opportunity to work on behalf of
supporting the IMF's research programs, I jumped at the
the IMF and do all I can to help find a cure for multiple
chance before I fully realized what such a commitment
myeloma in my husband's lifetime. This is a very personal
would entail. In the end, the event was a huge success.
mission for me.
How were you able to bring in such support for
How did myeloma enter your life?
the event?
Longevity runs in my husband's family. Steve's father is an
I work in the entertainment industry. My husband was
active 92-year-old. His mother is very active. My husband's
an agent with the William Morris Agency for many years.
great uncle was George Burns, who lived to celebrate
Steve's father, Lou Weiss, helped build the agency, having
his 100th birthday. So I had assumed that after a couple
served as chairman emeritus until his retirement in 2007,
more years of working, Steve and I would enjoy many
after 70 years with the company.
many years together in retirement. But that was before
I began my career as an attorney in New York. In 1993, I
myeloma...
came to Los Angeles with my mother so she could receive
In May 2008, Steve saw his internist for a routine physical. The blood test
an experimental bone marrow transplant for her lymphoma. I was hired
didn't look right, so the doctor repeated the test. Once again, the test
as an attorney by Walt Disney Television, then worked for Columbia Tri-
showed an elevated protein level. A week later, after more extensive test-
Star Television business affairs. In 1999, I joined Brillstein Entertainment
ing, the diagnosis of myeloma was established.
Partners (then Brillstein-Grey Entertainment), where I work closely with
some top performers, writers, and producers in the entertainment indus-
Like so many others, we had never heard of this cancer. At first, I thought
try. Currently, I am both a talent manager and Executive Vice President in
the doctor said "melanoma" the skin cancer which was something I
charge of Business Affairs.
was familiar with. The myeloma diagnosis was such a shock, I actually
passed out.
My clients Bob Saget, Meat Loaf, and Jill Zarin, as well as many of my writ-
ers, participated in the IMF benefit. Many of my friends and colleagues
What did you do after you got your bearings?
were there as well to support the cause. I reached out to the heads of film
By nature, I am a very take charge person. Day and night, I searched the
studios, television networks, and talent agencies. Without fail, the support
Internet, which turned out to be a source of both accurate and inaccurate
was there. People flew in from all over the country, donated money and
information about myeloma, and much of it was very bleak. Quickly, I
volunteered their time. Some of the comedians canceled paying gigs to
learned to filter the information I was accessing. That's why I fully appre-
appear at the event.
ciate the fact that the IMF is the premier source of
At present, how are you and Steve coping
reliable myeloma education.
"When I first met Amy I knew she shared
with his myeloma?
Immediately after the diagnosis, Steve was reluctant
our passion to find a cure for myeloma,
We had a tough Summer in 2009. But right now,
to know too much, but he then became a full partner
and that she recognized the importance
knock on wood, he is feeling okay and having a
in his recovery. After learning the basics about myelo-
of helping patients today, providing
relatively normal life. Steve and I have developed
ma, we proceeded to look for the best care for him.
education and offering support. Amy
our new "normal" living with myeloma which
We toured two premier hospitals in the area before
has been a tireless worker on behalf of
is not perfect but we can handle it while we move
going to the Cedars-Sinai Medical Center, where we
patients with multiple myeloma. This
towards a cure. We stay very pro-active. I have a
met Dr. Brian Durie. To us, Cedars just felt right, like
past November, Amy, along with Loraine
myeloma alert on my computer and, on a daily
a place where we were supposed to be. Plus, we
Boyle, co-chaired our Annual Comedy
basis, I keep up with info on new and existing
noticed that the cancer center is located at the corner
Celebration Benefiting the Peter Boyle
drugs. I also read several myeloma blogs.
of Gracie Allen Drive and George Burns Road, named
Memorial Fund. Her drive, capabilities
in honor of Steve's great aunt and uncle!
What is your vision of your continued
and respect within the entertainment
involvement with the IMF?
How were you introduced to the IMF?
community contributed significantly
to our success in raising both aware-
I think that bringing in more members of the
We met IMF co-founder and president Susie Novis
entertainment community to support our cause
ness and funding to support myeloma
through Dr. Durie, who is the co-founder and chair-
is important, both for increasing research revenue
research. We are thrilled that she is
man of the Foundation. Susie reached out to us and
and for raising the public visibility of the myeloma
became our source of comfort and information. At a
joining our Board and we know she will
community. The Gala benefit is one way to address
difficult time, the support, friendship, and caring of
continue to be a driving force in helping
both goals, and I would like to continue my
the IMF was there for us.
to raise money to find a cure."
involvement with this event, possibly expanding
Susie Novis
I truly believe that knowledge is power. To find a cure
the program into other cities. MT
IMF President and Co-founder
for myeloma, we need to raise funds for research
800-452-CURE(2873)
5
News & Notes
The content for the News & Notes section of Myeloma Today is drawn from a long list of publications
based on inquiries received by the IMF Hotline and the interests expressed by our readers.
To submit your inquiries or suggestions, please email MKazakova@myeloma.org.
IMF names Prof. Joan Bladé
CD38+/CD45 cells detected. Among the 104 patients with evidence of
as recipient of the
CD38+/CD45 cells the range was 0.110.2 x106 cells/kg and there was
2010 Robert A. Kyle
no difference in OS in this patient group compared to the group without
Lifetime Achievement Award
evidence of contaminating myeloma cells. Continuous variable analysis
also did not reveal any relationship between the dose of CD38+/CD45
The International Myeloma Foundation (IMF)
cells and survival. There may be a survival advantage after 40 months for
is proud to award its prestigious Robert A. Kyle
those receiving CD38+/CD45 cells, however the scientific rationale is
Lifetime Achievement Award for 2010 to Prof.
not well understood. Neither beta 2 microglobulin nor the number of
Joan Bladé. The IMF's Robert A. Kyle Lifetime
plasma cells in the bone marrow were relevant in multivariate analysis. In
Achievement Award was established to honor
conclusion, the presence of MM cells in the autograft does not appear to
an individual whose lifetime body of work furthers the ultimate goal of
influence OS, and the inclusion of CD45 and CD38 flow cytometric analy-
finding a cure for myeloma, a cancer of the bone marrow. The accolade
sis of mobilized stem cells may not be necessary. A video interview with
is named after Dr. Robert A. Kyle, noted physician and founder of the
Dr. Hayley Knollman of the Indiana University School of Medicine and
Myeloma and Related Diseases Research Group at the Mayo Clinic in
Simon Cancer Center is available on the IMF website, www.myeloma.org.
Rochester, Minnesota. Dr. Kyle himself was the first recipient of the award
in 2003. Subsequently, the award has been presented to Dr. Bart Barlogie
Phase III trial in smoldering multiple
of the Myeloma Institute for Research and Therapy in Little Rock, Arkansas
myeloma at high risk of progression
in 2004, Dr. Kenneth C. Anderson of the Dana Farber Cancer Institute in
Smoldering multiple myeloma (sMM) is a plasma cell (PC) disorder defined
2005, and Dr. Brian G.M. Durie of the Cedars Sinai Comprehensive Cancer
by the presence of 10% of PC and/or a serum M-component (MC) 3g/
Center in 2006, Prof. Heinz Ludwig in 2007, Prof. Mario Boccadoro in
dl without end-organ damage. Recent studies have identified a subgroup
2008 and Prof. Jean-Luc Harousseau in 2009.
of sMM patients at high risk of progression to active MM (>50% at 2 y):
Prof. Bladé graduated from the Medical School of the University of
patients with both PC 10% & MC 3g/dl or 95% aberrant PC (aPC)
Barcelona. In 1981 he joined the staff at the Hematology Department of
by immunophenotyping, or abnormal FLCs. Standard of care for sMM
Hospital Clinic, where is now the Senior Consultant and Director of the
is monitoring without treatment until disease progression. Several small
Myeloma Programs. He was co-founder of the PETHEMA Foundation, and
studies, which did not focus on high-risk sMM, have explored the value of
co-founder of the Spanish Myeloma Group. Dr. Bladé chaired the group
early treatment with either conventional agents (melphalan/prednisone)
who developed the European Group and Marrow Transplantation (EBMT)
or novel drugs (thalidomide, interleukin-1b), with no clear benefit.
response criteria, known today as the Bladé Criteria. He has published
Researchers at Hospital Universitario de Salamanca (Salamanca, Spain)
over 200 papers on both myeloma and MGUS, and he is an active member
participated in a multicenter, randomized, open-label, phase III trial of
of the International Myeloma Working Group (IMWG).
lenalidomide (Revlimid®) plus dexamethasone (len-dex) versus no treat-
The presentation will take place on June 9, 2010, in Barcelona, Spain.
ment in sMM patients at high risk of progression to symptomatic MM. In
For information about sponsorship opportunities, please contact Suzanne
the first interim analysis, the Salamanca investigators presented data on
Battaglia, at SBattaglia@myeloma.org, or (818) 487-7455.
the first 40 patients recruited, looking at whether early treatment prolongs
the time to progression (TTP) in sMM patients at high risk of progression
Circulating myeloma cells and autologous
to active MM. These preliminary results show that in sMM patients at
stem cell transplantation
high risk for progression to active MM, delayed treatment is associated
Multiple myeloma (MM) patients with a good performance status are
with early progression (median time 17.5 months) with bone disease,
often offered high-dose therapy (HDT) followed by autologous stem-cell
while so far len-dex has been able not only to prolong the TTP (without
transplantation (ASCT). HDT/ASCT is associated with complete response
any progression so far) but also to induce complete response (CR) with
(CR) rates of up to 40%. Although a significant proportion of patients
a manageable and acceptable toxicity profile. A video interview with Dr.
have a durable response after HDT/ASCT, others relapse relatively quickly
Maria-Victoria Mateos of the Hospital Universitario de Salamanca is avail-
and do not appear to benefit from the procedure, which may impact
able on the IMF website, www.myeloma.org. MT
the overall survival (OS) of these patients. Researchers at the Indiana
University School of Medicine and Simon Cancer Center (Indianapolis,
Help the IMF learn more about
IN) attempted to define the role of infusing mobilized myeloma cells on
the survival of patients undergoing ASCT.
myeloma patients
Help the IMF learn more about myeloma patients by completing the
Investigators studied data on autograft characteristics of 303 patients who
underwent ASCT between January 1999 and April 2008. The mobilization
latest online Myeloma Patient Survey at http://survey.myeloma.org.
regimen was cyclophosphamide and GCSF for the majority of the patients
You can complete this survey either as a patient or as a caregiver on
and GCSF alone for the more recent transplants. Melphalan at 200 mg/
behalf of a patient. All responses will be anonymous. No personal
m2 was given 18 hours prior ASC infusion. In 199 patients there were no
identifying information will be gathered.
6
www.myeloma.org
Scientific & Clinical
IMPACT OF CYTOGENETICS ON OVERALL
AND EVENT-FREE SURVIVAL IN MULTIPLE MYELOMA
Myeloma Today in conversation with Prof. Herve Avet-Loiseau
Please give us a little background on the
see figure). The best outcomes were for ISS Stage I
cytogenetics work of the IMWG, for which you
in the presence of t(11;14), with OS 89% at 4 years.
serve as the principal investigator.
Absence of any one adverse feature correlated with
One of the projects of the International Myeloma
80-81% OS at 4 years for Stage I. Presence of any
Working Group (IMWG) is focused on the molecular
one adverse feature had a more variable impact and
classification of multiple myeloma. Until now, the
correlated with 22%-40% OS at 4 years for Stage III.
prognostic impact of molecular changes in myeloma
FISH improves the prognostic value of the ISS and,
has been assessed from relatively small and/or incom-
in combination with ISS, provides the best predic-
plete studies, and there has been no large-scale analy-
tive capability. Presence of any CA, t(4;14), 17p-,
sis of molecular features linked to the International
hypodiploidy, and cytogenetic 13q- contribute to
Staging System (ISS) of myeloma, which is a very
poorer outcomes by ISS stage. The presence of
useful staging system published by the IMWG in 2005.
hyperdiploidy and/or t(11;14) contribute to better
In the current project, the IMWG is looking at com-
outcomes. The IMWG analysis confirms the cor-
bining the ISS prognostic model, which is based on
relations between abnormal molecular findings and
2m and albumin levels, with cytogenetics, especially
outcomes.
fluorescence in situ hybridization (FISH). We believe
cytogenetics to be very important in myeloma and,
Herve Avet-Loiseau, MD, PhD
Since the ASH presentation in December, what
in order to clarify the overall impact of chromosomal
Institute de Biologie,
updates are you able to share with us?
Center for Research
abnormalities, IMWG investigators undertook a col-
The project is moving forward rapidly. We are con-
in Myeloma (CERM)
lective analysis of 9,897 patients. At the 51st annual
Nantes, France
tinuing to collect cytogenetics data on myeloma
meeting of the American Society of Hematology (ASH),
patients from centers around the world and, so far,
which was held in December 2009, we presented our analysis to date.
the information has been very consistent with what we presented at ASH
in December. Since ASH, we have received data from Italy and the United
In brief, what were the IMWG findings presented at ASH?
Kingdom, and those results are being analyzed and verified by our statisti-
Within the 9,897 myeloma patients in the study, 2,295 patients had
cians.
presence of cytogenetic abnormalities (CA); 1,713 hypodiploidy; 1,673
hyperdiploidy; 2,309 cytogenetic deletion 13; 3,226 deletion 13 FISH;
Once we have the results of the analyses that are still outstanding, I will
1,573 FISH t(4;14); 1,486 FISH del 17p; 1, 683 FISH t(11;14); and 366
begin work on the manuscript for publication. Our goal is to propose a
FISH t(14;16). Enrolled patients had complete clinical and treatment
new staging system for myeloma that will integrate the ISS with the newer
details available including baseline standard prognostic factors, ISS stage,
findings on chromosomal abnormalities. Combining ISS with cytogenetics
as well as both progression-free survival (PFS) and overall survival (OS)
yields very valuable prognostic information, not only in the setting of clini-
information. Data was gath-
cal trials but also for doctors
ered from 14 studies in the
who see myeloma patients
U.S., Europe, Asia, and Latin
as part of their clinical
America. Univariate and mul-
practice. The information
tivariate analyses were per-
gleaned from cytogenetics
formed.
allows us to present a more
clear prognostic picture to
Each of the known adverse
the patient and to propose
molecular features had a neg-
more specific treatment reg-
ative impact upon both PFS
imens that are more likely
and OS. Among the deleteri-
to successfully address the
ous FISH abnormalities, the
individual patient's disease.
t(4;14) abnormality was high-
It is already clear to us that
ly correlated with poorer out-
all myeloma patients would
comes. The t(4;14) abnormal-
benefit from chromosomal
ity combined with ISS stage
analysis as part of their ini-
also significantly enhanced
tial disease assessment. MT
predictive capability (please
800-452-CURE(2873)
7
Scientific & Clinical
MYELOMA TODAY IN CONVERSATION WITH DR. SHAJI KUMAR
Novel Agents for Initial Therapy of Multiple Myeloma: Comparable results with continued initial therapy
and delayed transplantation at relapse versus early transplantation
Dr. Kumar, you made a presentation at the 51st
At baseline, the groups were comparable for age,
annual meeting of the American Society of
gender and other relevant clinical features.
Hematolog y (ASH) about your investigation into
What differences in efficacy did you find
the place of autologous stem cell transplantation
between the upfront and delayed transplant
in the era of novel agents in multiple myeloma.
groups in the Mayo Clinic study?
What can you tell us about this study?
In this group of newly diagnosed patients treated
Autologous stem cell transplantation has been an
with TD or LD as initial therapy, an approach of
important part of multiple myeloma therapy since ran-
continued initial therapy and delayed transplant at
domized trials showed improved survival with trans-
the time of first relapse appears to have comparable
plant compared to conventional therapy. However,
efficacy to upfront transplant. Most importantly, the
the conventional treatment of myeloma has changed
overall survival of patients was comparable whether
with the introduction of new drugs like IMiDs and pro-
they received the transplant in an early or delayed
teasome inhibitors and there has been an increasing
fashion. The time to disease progression appears
trend towards delaying transplant. While clinical trials
comparable following transplant, likely reflecting
in the pre-novel agent area have shown equivalent
the fact that these patients had not received previ-
outcomes with early or delayed transplant, it is not
ous treatment with melphalan type drugs. However,
clear if this holds true when the new drugs are used
the overall survival post-SCT appears to be lower for
in the beginning. Patients treated with new drugs have
Shaji Kumar, MD
Mayo Clinic
the delayed SCT group reflecting fewer options for
had an understandable concern regarding the value of
Rochester, MN
salvage therapy. The timing of transplant in the era of
transplant once their myeloma relapses.
novel agents remains the top question on the mind
We studied the disease course among 410 patients seen at Mayo Clinic
of both physicians and patients, and this is the first study to examine this
between 2001 and 2008. The patients included 123 (43%) individuals
very important question.
who received initial therapy with thalidomide-dexamethasone (TD) and
Did the retrospective study uncover a clear rationale when
167 (57%) patients who were treated with lenalidomide-dexamethasone
selecting early versus delayed transplant?
(LD). In 290 (71%) patients, a stem cell harvest was attempted and these
patients were considered transplant eligible for this study (i.e., started on
The rationale governing the decision to go forward with an early or
growth factor irrespective of collection success and whether or not they
delayed transplant is difficult to ascertain for any particular patient in
ended up having a transplant).
this retrospective study. The retrospective nature of our study precludes
understanding reason for the early versus delayed decision in any particu-
The early transplant group included 174 (60%) patients undergoing
lar patient. Clearly, randomized prospective studies are needed to confirm
transplant within 12 months of diagnosis, and in whom the SCT was per-
these findings. Transplantations should be considered a "regimen" for
formed within 2 months of stem cell harvest. The remaining 118 (40%)
myeloma therapy, not a platform to base all therapy on.
patients were considered in the delayed transplant group, irrespective of
whether a transplant was actually performed (45 patients from the delayed
Also, it is important to note that our retrospective study did not address
SCT group have been transplanted to date from among 68 who had a
quality of life (QOL) issue, and this should be assessed in future studies as
second line therapy). The median estimated time to SCT was 5.3 months
such consideration clearly plays an important role in the decision of early
among the early group compared to 39 months in the delayed group.
versus delayed SCT. MT
8
www.myeloma.org
Support Groups
PEOPLE HELPING PEOPLE
You are never alone in your bat le against myeloma
San Diego, CA
Award contest. Health Care Champions is an event that recognizes
The San Diego Multiple Myeloma Support Group was founded almost 15
individuals and/or organizations in the County of San Diego health care
years ago by Fred and Virginia Gloor. The group held its first meeting with
industry that are making a significant impact on the quality of health care.
a total of five people in attendance. From those humble beginnings, the
The support group feels very lucky to have been selected, not only to be
group has grown to approximately 300 patients and caregivers.
recognized, but also to be presented a Finalist award.
"Our meetings are open to anyone
who has questions about myeloma:
patients, caregivers, family mem-
bers, and friends," says Elliot Recht,
who has been part of the group
since his diagnosis in 1998 and has
served as its leader for the past four
years. "Fred and Virginia laid the
foundation for our group, and I was
very fortunate to have their support
Group members Joanna Jones, Don and Althea Channell,
Dr. Ewa Carrier and Elliot Recht
when I was newly diagnosed. Now
and Tom Hedges
I try to carry on what they started.
I coordinate the meetings and the speakers, and send out monthly emails
The San Diego Multiple Myeloma Support Group meets on the second
to our members. We have 40 to 50 people turn out to most meetings. At
Monday of every month in the Forum Meeting Room above the Wells
special meetings that feature dinner and speakers, we usually have 80
Fargo Bank at Westfield UTC Shoppingtown in La Jolla, CA. For more
to 120 people in attendance. At
information, please contact Elliot Recht at 858-273-5008 or ElliotRecht@
our core, we are a group focused
san.rr.com, or visit the group's website at www.multiplemyelomasandi-
on myeloma education, and we
ego.org.
have been able to bring in some
Montgomery, AL
excellent speakers to address the
The Montgomery Area Support Group was started by Dale and Kitty
group. In addition, we have a num-
Collier in March 2009. The idea to form the group came to the Colliers
ber of long-term survivors among
as a result of attending support meetings at the Arkansas Cancer Research
us, which is always encouraging to
Center. Like other patients at the Arkansas center, the Colliers went home
our new members who have been
to an area that did not have a support group specifically serving patients
recently diagnosed."
with myeloma and their families.
The group's February meeting took
Dr. Ewa Carrier and
place at University of California San
James W. Huston
Diego (UCSD) and featured a reception and presentations by Dr. Ewa
Carrier (UCSD Moores Cancer Center) and James W. Huston (co-author
of the book "100 Questions and Answers about Myeloma"). IMF's Kelly
Cox (Director of Support Groups Outreach) was also in attendance, as
were 110 group members who came to enjoy the evening and hear the
presentations.
Currently the group holds two meetings a year that include dinner or a
reception, and Elliot is making plans to host a third educational event like
the recent UCSD meeting on a regular basis. "We are very fortunate to
have the IMF as one of our group's sponsors," adds Elliot. "And we also
receive support from Celgene and Millennium Pharmaceuticals, as well as
The Montgomery Area Support Group
RosArt Multimedia. But we are continuing to seek new sponsors and sup-
porters." [Elliot is also seeking someone to assist him with running
As the Colliers promoted the existence of their group, they were able
the monthly meetings and someone who can help the group seek
to secure some media coverage. An article appeared in the local paper,
additional funding by writing grants. He welcomes hearing from
which eventually came to the attention of David Martin, who had just
interested IMFers.]
been diagnosed with myeloma. David and his wife Lori joined the group
and, when the Colliers were moving out of the area and were looking for
In October 2009, the San Diego group was selected as a Finalist in the
2009 third annual San Diego Business Journal's Health Care Champion
CONTINUES ON PAGE 12
800-452-CURE(2873)
9
Support Groups
PEOPLE HELPING PEOPLE -- continued from page 9
Llamada a la comunidad hispana
new leadership to assume responsibility, David and Lori Martin stepped
up to the task.
con el mieloma multiple
La IMF tiene el orgullo de anunciar
The IMF is pleased to
"There is stil no other dedicated myeloma support group in the
que por primera vez en los Estados
announce that the first ever
Montgomery area," says David. "In fact, we've had people drive as much
Unidos, existirá un grupo de apoyo
Spanish-language myeloma
as 100 miles to attend our meetings. Some of our gatherings can be
para la comunidad hispana con el
support group meeting
smaller and more intimate, but every third meeting or so we bring in guest
mieloma múltiple en español. La
in the US is scheduled to
speakers and those days always draw a bigger crowd. We encourage our
primera reunión se celebrará el
take place on May 1 in Los
members to be educated about this disease, but we feel that it is equally
primero de mayo en Los Angeles.
Angeles, CA. For more infor-
important for people to be able to share their experiences, both medical
Para más información, contacte a
mation, please contact Betty
and emotional, with others who understand exactly what they are going
Betty (Mirna) Arevalo por email
(Mirna) Arevalo at mare-
through. I know that myeloma varies from case to case but talking to other
marevalo@myeloma.org o sin
valo@myeloma.org or 800-
patients helps us understand our own experience better. It is gratifying to
costo al 800-452-2873.
452-CURE (2873).
know that our support group is providing something that people need."
Date/Fecha: May 1, 2010
"As a caregiver, I know that no matter how hard it might be to get to a
Time/Hora: 10 AM 12 PM
meeting, I always feel so much better having been there. The support we
Location/Dirección:
share with one another is so valuable," adds Lori. "We have patients in
Sheraton Universal Hotel (in the Board Room)
every age group, both newly diagnosed and long-term survivors, but I'd
333 Universal Hollywood Drive, Universal City, CA 91608
say many who come to our meetings have something in common they
have undergone transplantation at the myeloma center in Little Rock, AR.
Some of our members had their transplants 10 to 15 years ago, so our
I realize that every day is a blessing," says Barbara. "As group members, we
group has a lot of positive stories to share and encouragement to offer."
learn so much from each other and help in our own healing by sharing
with others." The SOWEGA Multiple Myeloma and Stem Cell Transplant
The Montgomery Area Support Group meets on the second Saturday
Support Group meets on the first Thursday of each month at 5:30 PM
of each month at Frazer United Methodist Church on Atlanta Highway.
in Albany, GA. For more information, please contact Barbara Blake at
For more information, please call David and Lori Martin at 334-277-6824
bblake5186@aol.com or 229-308-7337.
(home, evenings) or 334-462-4183 (cell) or email them at dmartin1@
ch2m.com or newtr4a@yahoo.com.
Shreveport/Bossier, LA: Donna LaRocque, whose husband Roger was
diagnosed with myeloma in 2005, has started a new myeloma support
Start-up groups seek your support
group at the LSU Health Sciences Center's Feist-Weiller Cancer Center.
Albany, GA: When Barbara Blake moved back to Georgia from Arizona,
"I call myself an outreach program," says Donna, who had previously start-
she discovered there was no myeloma support group in the Southwestern
ed a successful myeloma support group in East Texas. The first meeting of
part of her home state. Barbara's oncologist introduced her to a social
the Shreveport/Bossier Area Multiple Myeloma Support Group was held
worker and the two of them organized a support group that held its first
on March 15th. For more information about upcoming meetings, please
meeting in the summer of 2009. The group is growing little by little,
contact Donna LaRocque at donnajune@cablynx.com or 903-918-9553.
and welcomes your participation and involvement. "As a cancer warrior,
CONTINUES ON PAGE 12
How to Start a Myeloma Support Group
How the IMF can assist you
Secure a location for the meeting as soon as practical. Consider
Provide direction and ongoing assistance in starting your myeloma
parking availability and handicap accessibility. Some suggestions are
support group.
hospitals, community centers, libraries, and churches.
List your support group on the IMF website.
Pick a date and time convenient to you, taking into consideration the
Create a basic website for the group.
best time for others to come to the meeting. Groups typically meet for
Design a flyer for the group.
two hours, and on a monthly basis.
Mail out a flyer to patients in the area to help with outreach.
IMF staff can visit and provide you with free IMF publications and
Compose a letter that you can send to doctors, clinics, hospitals, and
information.
patients and family members informing them of the group. Ask the
Provide you with an annual DVD of an IMF Patient & Family Seminar.
office of your local oncologist to inform their patients about your
group and post your flyer in their office.
Offer free IMF Patient & Family Seminar registration for support
group leaders.
List your group's meeting date, time, and place in your local
Access to specific website exclusively for IMF Support Group
newspaper's health section (free). Involve local radio and TV media
Leaders, as well as the Support Group Leader Listserv.
to help create awareness of your group.
Invite you to the IMF Annual Support Group Leader Retreat.
10
www.myeloma.org
Education & Awareness
SPOTLIGHT ON ADVOCACY
Important policies and political issues that impact the myeloma community
By Christine Murphy
SincethestartoftheNewYear,theIMFhas Additionally,RepresentativesLoisCapps(D-CA)andFrankPallone(D-NJ)
been working hard to advance legislative
intend to introduce the House companion to the ALERT Act.
policies that benefit myeloma patients. With the
IMF Campaign on Health Reform
passage of health reform, Congress is beginning
to look at other health related priorities that
IMF led a campaign calling on Congress to retain a sharp focus on criti-
would benefit the myeloma community. Below
cal elements of health reform. Essential issues of immediate importance
are some of the issues that IMF will be focusing
to patients should not be lost in partisan battles. These essential issues
on throughout 2010.
included:
Has Your U.S. Representative Cosponsored
· Affordable access to basic and catastrophic health care coverage for as
the Cancer Coverage Parity Act (HR 2366)?
many Americans as possible.
Representative Brian Higgins (D-NY ) introduced the Cancer Drug
· The elimination of "pre-existing conditions" as a barrier to health
Coverage Parity Act of 2009 (HR 2366) on May 12th, 2009. HR 2366
care coverage.
eliminates the inequities for cancer patients whose insurance coverage
· The elimination of annual and lifetime caps on insurance coverage.
has differences in the way oral and intravenous chemotherapy treatments
· Closing of the Medicare "donut hole."
are covered. The IMF needs your help to build support for this important
· Continued investment in research and innovation to address the
piece of legislation. Currently HR 2366 has 5 co-sponsors (4 D, 1 R). To
needs of those with all deadly diseases.
encourage your U.S. Representative to become a co-sponsor, please visit
the Advocacy Action Center at http://www.capwiz.com/myeloma/issues/
While many of these essential issues have been addressed in the recently
alert/?alertid=14033126.
passed health reform bill, IMF will be working with Congress to ensure
that all of them are eventually addressed in future legislation.
President's Federal Budget Includes Funding
Increases and Cuts to Myeloma Programs
Health Insurance Reform Signed Into Law
On Monday, February 1st, the President released his budget for fiscal
On Tuesday, March 23rd, the President signed into law the Patient
year (FY ) 2011. The President's Budget includes $32.09 billion for the
Protection and Affordable Care Act which transforms significant
National Institutes of Health (NIH), an increase of $1 billion (3.2 percent)
portions of the health care environment and contains a number of
over the FY 2010. The proposed NIH budget includes $5.26 billion for
reforms that will benefit myeloma patients. Once the underlying legisla-
the National Cancer Institute, an increase of $161 million (3.16 percent).
tion became law, the House and the Senate passed the Health Care and
The President's Budget also provides $2.5 billion for the Food and Drug
Education Reconciliation Act (amendments to the health reform bill).
Administration (FDA), an increase of $148 million (6.26 percent) over
Based on IMF's campaign on health reform (listed above), below is a list
FY 2010.
of the provisions that are important to myeloma patients:
While this is good news for cancer research, the President's Budget
· Access to Clinical Trials. Health insurance plans will be required
eliminated the Geraldine Ferraro Blood Cancer Program at the Centers
to provide coverage for routine costs associated with participation
for Disease Control and Prevention (CDC), which received $4.7 million in
in clinical trials. This will help myeloma patients as many have had
FY 2010. This is an important program to the myeloma community and
to decline participation in trials due to plans refusing to pay for the
the IMF will work with our champions in Congress to ensure that this
same costs they would reimburse for a patient that is going through
crucial program continues to receive funding.
non-clinical trial treatment.
House Will Introduce the 21st Century Cancer
· Medicare "Donut Hole" Closure. The bill provides a $250 rebate
ALERT Act
to Medicare beneficiaries who reach the Part D coverage gap in 2010
In 2009, former Senator Ted Kennedy (D-MA) and Senator Kay Bailey
(Effective January 1, 2010). It also phases down gradually the ben-
Hutchison (R-TX) introduced S 717, the 21st Century Cancer Access to
eficiary coinsurance rate in the Medicare Part D coverage gap from
Life-Saving Early Detection, Research, and Treatment (ALERT) Act. This
100% to 25% by 2020.
legislation is an update to the National Cancer Act of 1971. The ALERT Act
· Medicare Part D Prescription Discounts. For brand-name drugs,
was put on hold for health care reform and the death of Senator Kennedy.
pharmaceutical manufacturers wil provide a 50% discount on
Senator Hutchison is committed to moving this legislation and will be
prescriptions filled in the Medicare Part D coverage gap beginning
teaming up with Senator Dianne Feinstein (D-CA) to move the ALERT Act.
CONTINUES ON PAGE 12
800-452-CURE(2873)
11
Education & Awareness
SUPPORT GROUPS -- continued from page 10
NEW support groups invite YOU to join them
IMF Welcomes
Eau Claire, Wisconsin: For more information, please contact Colleen
Joanie Borbely
O'Connor at eauclairemyeloma@me.com or 715-835-2303.
The IMF is pleased to announce that
Richmond, Virginia: For more information, please contact Barbara Marx
Joanie Borbely has joined our team as the
at gobabsgo@aol.com.
Regional Co-director of Support Groups
York, Pennsylvania: For more information, please contact Sharon Berger
SE (South East). Joanie has been a vol-
at yorkbergers@verizon.net or 717-292-5890.
unteer at the IMF since its inception. She
holds a degree in Speech Pathology and
2010 IMF Annual Support Group Leaders'
Audiology from Emerson College, which
Retreat
she applied for 10 years in private practice
This year's Support Group Leaders' Retreat will commence at 1 p.m.
before moving on to a career in sales. Joanie has a long history as an
on July 23rd at the beautiful Four Seasons Resort & Club, Dallas at Las
advocate for the myeloma community. Located in Florida, Joanie now
Colinas, in Irving, TX. The retreat will conclude at noon on July 25th.
serves as an additional member of the IMF for the myeloma support
Alan Kumomoto will once again serve as facilitator. We are confident that
groups in the region. She can be reached at jborbely@myeloma.org
everyone who attends the retreat will take away lots of helpful information
or 860-655-7107.
to bring back to their group to make it even better! MT
SPOTLIGHT ON ADVOCACY -- continued from page 11
in 2011, in addition to federal subsidies of 25% of the brand-name
How to contact the IMF Advocacy Team
drug cost by 2020 (phased in beginning in 2013). For generic drugs,
manufacturers will provide federal subsidies of 75% of the generic
Christine Murphy Director, Government Relations
drug cost by 2020 for prescriptions filled in the Medicare Part D cov-
International Myeloma Foundation
erage gap (phased in beginning in 2011). The bill will also reduce the
Phone: 703-738-1498
Fax: 703-349-5879
out-of pocket amount that qualifies an enrollee for catastrophic
E-mail: cmurphy@myeloma.org
coverage.
Arin Assero Director, Communications and Public Policy
· Elimination of Annual and Lifetime Benefit Caps. Both the
International Myeloma Foundation
health reform bill and the reconciliation bill include provisions that
Phone: 800-452-CURE (2873) ext. 232
eliminate annual and lifetime caps on insurance coverage. Lifetime
Fax: 818-487-7454
E-mail: aassero@myeloma.org
and annual limits on private insurance pose a considerable problem
for individuals with myeloma. Patients who exceed their annual or
Meghan Pullarn Advocacy Assistant
lifetime limits have to find other ways to pay for medical costs, such
International Myeloma Foundation
Phone: 410-252-3457
as paying more out of pocket, finding new insurance, or worse cur-
E-mail: mpullarn@myeloma.org
tailing medical care. Lifetime limits would be eliminated in all health
insurance plans both new and existing six months after enact-
ment. Annual limits would be restricted in new plans until 2014,
IMF Welcomes Meghan Pullarn
after which they would be prohibited in all new and in existing group
health insurance plans.
We are pleased to announce that Meghan Pullarn has joined the IMF
to assist with our Advocacy program. Meghan has more than 8 years
· Elimination of Pre-Existing Conditions as Insurance Barrier. This
of marketing and communications experience across a broad range of
year, children with pre-existing conditions can no longer be denied
industries. Her focused experience is in strategic planning, copywrit-
health insurance coverage. Beginning in 2014, pre-existing condition
ing, and event planning. Meghan earned her Bachelor's degree from
discrimination will become a thing of the past for everyone with
Towson University, and holds an MBA from Loyola University Maryland.
health insurance including myeloma patients. Additionally, adults
who are uninsured because of pre-existing conditions will have
In her new role at the IMF, Meghan will assist with the Advocacy pro-
access to affordable insurance through a temporary subsidized high-
gram grassroots outreach, event coordination, and social media cam-
risk pool beginning this year.. MT
paigns. She will also assist the IMF Advocacy program with its overall
goal of raising visibility across the country while shaping public policy
Editor's Note: For more information, or to take action, please visit the IMF's
Advocacy Action Center at www.advocacy.myeloma.org.
to meet the specific needs of myeloma patients.
12
www.myeloma.org
Supportive Care
IMF HOTLINE COORDINATORS ANSWER YOUR QUESTIONS
The IMF Hotline 800-452-CURE (2873) consistently provides cal ers with the best information about myeloma
in a caring and compassionate manner. The Hotline is staffed by Paul Hewit , Missy Klepetar, Nancy Baxter,
and Debbie Birns. The phone lines are open Monday through Friday, 9am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
Is the use of gadolinium in MRI a
"Gadolinium-containing contrast
necessary part of the imaging test
agent promotes multiple myeloma
and is it safe?
cell growth: implication for clini-
MRI (magnetic resonance imag-
cal use of MRI in myeloma" (ASH
ing) is a diagnostic test that uses
abstract 1809). Dr. Fulciniti's collabo-
magnetic energ y to produce
rators included others at Dana-Farber
detailed two- or three-dimension-
Cancer Institute and researchers at the
al images of organs and structures
Myeloma Institute at the University of
inside the body. It can provide
Arkansas (Little Rock, AR).
20-30% more information than a
The investigators involved in this study
standard x-ray (a form of electro-
of gadolinium, both in the laboratory
magnetic radiation). An MRI test is
Paul Hewitt, Missy Klepetar, Nancy Baxter, and Debbie Birns
setting and in the tissues of myeloma
useful in assessing the disease state
patients, drew the following conclu-
of a patient with multiple myeloma. It can detect the amount of myeloma
sion: "These results, confirming both in vitro and in vivo growth-promot-
cell infiltration in the bone marrow before bone destruction is evident
ing effects of Gd-containing contrast agent on multiple myeloma, suggest
on x-rays. An MRI is excellent for imaging of the axial skeleton (the
the need for further analysis of the mechanism of its action on myeloma
bones of the head and neck, rib cage, and vertebral column) and can
cells and careful analysis of its clinical impact in multiple myeloma
help distinguish between benign and malignant compression fractures.
patients undergoing MRI evaluation." To watch the video of Dr. Fulciniti's
It can illustrate spinal cord compression as well as head and neck plas-
IMF interview at ASH, read the abstract, and see the poster for this presen-
macytomas. In myeloma, MRI is considered to be more sensitive than
tation, please visit the IMF website at www.myeloma.org.
standard radiography.1
The question thus becomes: is it possible to get sufficient infor-
Gadolinium is a contrast agent a dye injected into the body
mation from MRI imaging without using gadolinium? The answer
to enhance images from the MRI. Gadolinium is a colorless, non-
appears to be yes. Large groups specializing in multiple myeloma, such
radioactive, water-like liquid. It is toxic but usually rapidly cleared by the
as the Myeloma Institute in Little Rock and others, specifically exclude
kidneys. Gadolinium is taken up by active myeloma lesions. This contrast
gadolinium from their standard MRI sequence protocols. The new
enhancement can help identify areas of myeloma involvement. However,
International Myeloma Working Group (IMWG) imaging guidelines2
there has been some debate regarding the wisdom of using gadolinium
likewise recommend imaging without gadolinium in part to avoid
in myeloma patients because of potential risks. Many myeloma patients
the risks, but also because excellent results can be obtained without
have kidneys that are compromised by their disease and their creatinine
gadolinium.
clearance is lower than in individuals with healthy kidneys. Patients with
renal dysfunction who get an MRI using gadolinium dye are at risk to
In conclusion, it is possible for an imaging specialist to perform an
develop Nephrogenic Systemic Fibrosis (NSF). NSF is a systemic disease,
MRI without the use of gadolinium and still get an accurate assess-
meaning it affects multiple systems of the body or the body as a whole.
ment of disease. This avoids any potential risks. Please discuss all
Symptoms of NFS include hard, shiny, reddened or darkened patches of
of the above with your oncologist and/or radiation oncologist prior
skin that tighten and become extremely painful; joint inflexibility; painful
to having an MRI.
joints; loss of movement; yellow-colored eyes; as well as potential lung,
Editor's Note: If you would like to obtain copies of the referenced papers,
heart, and other organ damage. This is therefore rather a serious potential
please contact IMF Hotline Coordinators at 800-452-CURE (2873).
side effect.
1 Engelhardt M, Kleber M, Frydrychowicz A, et al. "Superiority of magnetic
resonance imaging over conventional radiographs in multiple myeloma."
It is thus best to avoid use of gadolinium in the setting of known
Anticancer Research, 29:4745-4750, 2009.
renal compromise. In addition, it is worthwhile to note that at the
2 Dimopoulos M, Terpos E, Comenzo RL, et al. "International myeloma
December 2009 American Society of Hematology (ASH) meeting in
working group (IMWG) consensus statement and guidelines regarding
the current role of imaging techniques in the diagnosis and monitoring of
New Orleans, data was presented by Mariateresa Fulciniti, PhD (Dana-
multiple myeloma." Leukemia; 23:1545-1559, 2009.
Farber Cancer Institute, Harvard Medical School, Boston, MA), entitled
800-452-CURE(2873)
13
International Affiliates
UPDATES FROM AROUND THE GLOBE
Report from IMF Japan
By Daisuke Nakao
IMF Japan was founded by myeloma patient Akira Horinouchi in 1997,
after he relapsed from an autologous transplant. Aki found comfort and
drew strength from the IMF and its listserv (mailing list). He wanted to
share with other myeloma patients in Japan the benefits that he received
through his relationship with the IMF. Aki became the driving force behind
IMF Japan with his commitment to reach out to people across Japan to
offer support and let them know that they are not alone in their battle with
this disease. Aki also inspired members to support the search for a cure by
raising funds to benefit myeloma research.
Today, IMF Japan not only keeps Aki's vision and spirit alive, it continues
to grow and serve more people in more ways. IMF Japan is currently being
run by seven board members, headed by Midori Horinouchi, Akira's wife.
IMF Japan's Kyoko Joko and Daisuke Nakao with Susie Novis and
The mission of IMF Japan is based on four pillars:
Dr. Brian Durie at the closing ceremonies. In the background is
IMF Japan's "Thank You Doctor Tree" with letters from myeloma patients.
1. Provide accurate and timely information in Japanese
2. Connect patients and their medical teams
The 12th annual seminar was very special in a number ways. We had a
3. Provide for a patient community
record turnout of more than 200 participants. For the first time, JMSG and
IMF Japan totally integrated their respective annual events into a two-day
4. Work towards a cure
event. The first day targeted the medical professional community (though
IMF Japan publishes a bi-annual community magazine, "Ganbarimassyoi,"
patients were free to attend), and the second day was dedicated to
which is colloquial Japanese for "Give it a try." We also host seminars
patients and their families (although doctors were free to attend as well).
and study sessions all over Japan, the latter being held in co-opera-
The first day of the event was a departure from previous JMSG annual
tion with the Japan Myeloma Study Group (JMSG). We maintain an
meetings in that the role of "co-medicals" (such as nurses and pharma-
information website, which also hosts a community bulletin board
cists) were highlighted as key players of the medical team. Talks were
(http://myeloma.gr.jp). IMF Japan also provides funding for promising
given on themes such as nursing, medication control, and patient-doctor
myeloma research and clinical trials though its annual Aki Award research
relationships, with each presentation followed by a panel discussion.
grant. We also petition the national government and Diet representatives
I was pleased to present the patient-doctor relationship talk on behalf
for the rapid approval of new drugs.
of IMF Japan.
Every November,
The 2009 IMF Japan meeting was a momentous event for the myeloma
IMF Japan holds
community in Japan, but there was something even more special that
its annual Patient
weekend. IMF president Susie Novis and chairman of the board Dr. Brian
& Family Seminar,
Durie flew in to join us at the meeting! There was a dinner with the IMF
at a different
staff on Friday, presentations on Saturday, followed by a Saturday dinner
location
each
party with patients, family members, and staff, and on Sunday, a family
year to make
member talk session headed by Susie. A lot of patients and family mem-
it more acces-
bers who heard Susie and Brian talk came up to us and said that they have
sible to members
not been so comforted, felt so cared for in a long while. Brian and Susie,
around the coun-
they do have a magic touch!
try. These semi-
nars are full-day
Brian and Susie, many many thanks from all of us at IMF Japan. Together,
Susie Novis and Dr. Brian Durie being introduced
events, with a lot
we will continue to significantly further the cause of myeloma education
to the seminar participants
of talking and a lot
and awareness in Japan. We hope to see you visiting us again soon! MT
of studying. The faculty presenters are some of the best myeloma special-
ists in Japan, all belonging to the JMSG, which is headed by Dr. Shimizu,
who is also on the scientific advisory board of the IMF. IMF Japan seminars
National Myeloma Day in Australia
are scheduled on the day following the annual meeting of the JMSG so as
The Leukaemia Foundation of Australia is holding its inaugural
to make scheduling easier on the doctors.
National Myeloma Day on Wednesday, May 19, 2010. The event
will take place across all states and territories in Australia. For more
The 12th annual seminar was held on November 21-22, 2009. Niigata City,
information, please email myeloma@leukaemia.org.au. A recap of
a large port-city facing the Sea of Japan, provided a fascinating setting for
the day's events will appear in the summer issue of Myeloma Today.
the meeting. Niigata is famous for its rice and sake (rice wine).
14
www.myeloma.org
Member Events
IMFERS RAISE FUNDS TO BENEFIT MYELOMA COMMUNITY
By Suzanne Battaglia
Now in its 20th year of service to the myeloma com-
Liz and the entire Stafford Family have remained committed to the WAMP
munity, the IMF continues to strive to be your founda-
Swim-a-thon tradition. Over the years, hundreds of swimmers have
tion in the most inclusive way possible. Working with
participated in raising funds to
IMFers across the country and around the world,
fight myeloma. The funds raised
our Member Fundraising program has blossomed
through the WAMP Swim-a-thon
into a network of people like you, raising money for
have supported cutting-edge
myeloma research and educational programs.
research through IMF Brian D.
Novis Grants awarded to inves-
By organizing an event in your community, you are
tigators working in the field of
raising public awareness among those who have
myeloma.
never heard of myeloma, while helping those whose
lives have been touched by this disease know where
In lieu of wedding favors, Liz
to turn for the most up-to-date information and
and Greg made a contribution
The whole bridal party wore IMF
resources. You know you want to do something in
towards the Jeffrey Stafford
bracelets in honor of Liz's father
your community, but deciding on what to do and how to do it can be
research fund at the IMF. In fact, the entire wedding party got into the
confusing. The IMF's FUNdraising program is here to make it as easy as
spirit with everyone wearing IMF burgundy bracelets and all the grooms-
possible for you to participate, whether or not you have any previous
men wearing IMF ribbon pins in their lapels in honor of Liz's father. Please
experience with such activities.
join us in wishing the Stafford and Kurantowicz Families all the best for
many years to come!
FUNdraising is fun (get it?) and easy to do, and brings with it the satis-
faction of knowing that YOU have made a difference in many lives. We
All wedding photos courtesy of Carla Ten Eyck and Mike Romano:
are grateful to all IMFers who contribute their time, imagination, and
Misbehave for Myeloma
hard work to benefit the myeloma community. Our FUNdraising pro-
On September 25, 2009, Alexandra
gram provides you with the tools, assistance, and expertise to make your
Zousmer and her cousin Joanna Share
event a success. Choose an established event model or create your own
co-hosted a myeloma fundraising event
no idea is too large or too small. Join us in working together toward
at Captain Morgan's Club, located at
our common goal... a CURE. Please contact me, Suzanne Battaglia, at
the legendary Wrigley Field baseball sta-
sbattaglia@myeloma.org or 800-452-CURE (2873). I am here to chat
dium in Wrigleyvil e, a neighborhood
with you about any ideas you might have. Be part of the progress of
of Chicago, IL. Wrigley Field was built
making miracles happen!
in 1914 and has served as the home
Alexandra Zousmer and
Here is just a sampling of some past and upcoming events...
Joanna Share in the shirts
ballpark of the Chicago Cubs since 1916.
they designed for their
Liz Stafford &
The Captain Morgan Club, located near
Misbehave for Myeloma event the Harry Caray statue at the southeast
Greg Kurantowicz
corner of the ballpark, has a partnership with the Cubs and serves as a fan
Get Married!
headquarters outside Wrigley Field.
On September 18, 2009, IMFer Liz Stafford
When Alex and Joanna decided to organize the Misbehave for Myeloma
married her high school sweetheart Greg
benefit to raise funds for myeloma research in honor of Arnold Zousmer
Kurantowicz at the Church Of Saint Timothy
(Alex's dad and Joanna's uncle), they knew exactly what they wanted to
in West Hartford, CT. Liz has been a part of
do. "We have all heard of those stuffy char-
the IMF family since she was a high school
ity events where you have to get dressed
student raising
up and pay lots of money to have dinner
awareness and
with people you don't know, right? Well,
funds for myelo-
we decided to spice it up a bit." For a $30
ma
research
entry fee, guests were granted access to a
in honor of
3-hour open bar, as well as a silent auction
her father, Jeffrey Stafford. Liz organized
and raffle with loads of great items.
the first annual WAMP Swim-a-thon at the
Wampanoag Country Club in 2001 along
More than 150 friends gathered to honor
with her siblings Julianne, Christopher, and
Arnold Zousmer and to support the
Courtney.
Zousmer and Share families. In addition,
55 national and local sponsors contributed
Throughout her college years and while she
Alexandra with her father
to the event's success. Together, organizers
Arnold Zousmer
worked as an intern in the nation's capitol,
Liz and her father
CONTINUES ON PAGE 16
800-452-CURE(2873)
15
Member Events
MEMBER EVENTS -- continued from page 15
and supporters brought the total raised
Beyond helping her grandmother cope with the day-to-day challenges of
for myeloma research close to $15,000!
myeloma, Donna decided to start working toward a cure by raising funds
"The event was so much fun for every-
for research: "We know that new drugs and better treatments are on their
one, the turnout was bigger than we ever
way, but money is needed to support myeloma research. It is my goal
expected, and the support for IMF was
to be able to contrib-
unreal!" says Alex. "My dad was smiling
ute to the fight against
the whole time!"
myeloma by funding
scientific advances in
"We cannot thank the IMF enough for
the field."
their unconditional dedication to improv-
ing the quality of life of myeloma patients
TriBeCans for the
The cousins celebrate the
while working toward prevention and a
Fight Against Myeloma
astounding success of their
cure of this life-altering disease. Myeloma
held the group's first
first fundraising event!
research and support would not be where
fundraiser A Night
it is today without the IMF," says Joanna. "Our event did more than raise
of Wellness & Beauty
money and awareness; it raised everyone's spirits and made my uncle
on March 16, 2010.
and all our family members and friends very happy. The experience
The event was limited
was awesome!!!"
to an exclusive list of
Three generations of women
30 guests. To ensure
The cousins are already working on their 2010 fundraiser, which promises
united in their fight against myeloma:
the success of the eve- Donna Marotta with grandmother Marie Moretti
to be even bigger and more successful than the last. If you wish to join
ning, Donna asked
and mother Eleanor Marotta
the Zousmer and Share families on November 6, come to Harry Caray's
companies to donate products and friends to volunteer their time.
at 3551 North Sheffield in Wrigleyville, visit the event's IMF web page
SkinCeuticals, Arbonne, Estée Lauder, Equinox, and Lisa Stewart Jewelry
at http:/ online.myeloma.org/netcommunity/misbehaveformyeloma2010,
were among the companies that made donations for the auction and
look for Misbehave for Myeloma on Facebook at http://www.facebook.
the event goodie bags. In addition, Skincare expert Yona Gonen, Urban
com/pages/Misbehave-for-Myeloma/105089836188137?ref=ts, or call the
Nutrient's Marie Dulev, and celebrity manicurist Elisa Ferri made presen-
IMF at 800-452-CURE (2873)!
tations during the evening. The event's success exceeded the organizers'
TriBeCans for the Fight Against Myeloma
expectations! "We are very pleased with the outcome of our event," says
A philanthropic organization dedicated to helping myeloma patients by
Donna. "And we are already looking forward to our next event, which we
raising funds for the IMF, TriBeCans for the Fight Against Myeloma was
anticipate will happen in the Fall." For more information, please look for
formed by Donna Marotta, Nicole Bennett, and Melanie Lawley. The
the TriBeCans for the Fight Against Myeloma group on Facebook. MT
organization was the idea of TriBeCa resident Donna Marotta, whose
grandmother Marie Moretti was diagnosed with myeloma in April 2009.
"My grandmother had 11 children, so I have a very large extended family,
UPCOMING MEMBER EVENTS
and no one else in our family has ever had cancer," says Donna. "The diag-
April 24, 2010 MILES FOR MYELOMA 5K Walk/Run
nosis was devastating for all of us." After rising above several difficulties
Co-Sponsored by Philadelphia Multiple Myeloma Networking Group,
associated with chemotherapy and blood transfusions, Donna is pleased
Central New Jersey Support Group, and Northern Jersey Support Group
Philadelphia, PA
to report that Marie is doing well. "Her doctors have come up with a treat-
For more information, please contact Karen Horan at
ment that seems to be holding the disease at bay."
karen.horan@verizon.net
May 22, 2010 11th annual "JC" Golf Tournament
Wapicada Golf Course St. Cloud, MN
For more information, please contact Bob Zins at boloz@charter.net
June 5, 2010 3rd annual Czerkies Charitable Golf Outing
Whitetail Ridge Golf Club Yorkville, IL
For more information, please contact Craig Czerkies at czak16@aol.com
October 3, 2010 "Afternoon Tea"
Four Seasons Hotel Washington, DC
For information and reservations, please contact Carol Klein at
carol60klein@verizon.net
October 20, 2010 Coach Rob's Charity Golf and Benefit Bash
Rock Springs Ridge Golf Club Apopka, FL
For information and reservations, please contact Rob Bradford at
TriBeCans for the Fight Against Myeloma group members
rbradfdird@crothall.com
Melanie Lawley, Nicole Bennett and Donna Marotta
16
www.myeloma.org
Patient & Caregiver Experience
MYELOMA TODAY IN CONVERSATION WITH YOLANDA BRUNSON-SARRABO
When and how did myeloma first enter your life?
he can't tell me not to do it. The decision is ours.
My first experience with cancer took place many years
I am still pretty healthy so, if we wish to proceed,
ago when my grandmother had breast cancer. I was
this would be a good time to try to have a child.
very young then, but I was the eldest of my generation
Of course, my husband worries that this might put
of cousins, and my grandmother's experience had a
my life on the line. We will be having a consulta-
big impact on me.
tion with a fertility specialist to weigh the risks of
our situation. And I would welcome hearing from
I became very health-conscious, both in terms of
IMFers who might have had to face a similar deci-
being an advocate for a healthy lifestyle and in terms
sion, so if anyone would like to reach out, please
of getting regular health screenings. I had regular
write to me care of the IMF.
check-ups and kept an eye on my slight inclination
toward anemia and my vitamin D deficiency, which
Do you and your husband have a support
has been treated with supplements. In 2005, I had a
network around you?
lump in my breast, which understandably caused me
Eventually, we told our families, and we have grad-
quite a bit of concern. Thankfully, it turned out to be
ually told a few friends. Some people have been
benign.
supportive while others have had difficulty process-
Everything remained relatively normal until 2008,
ing the "cancer" word. No one at work knows.
when my annual physical and blood test showed an
I'm a young black female. Statistics show that
elevated protein level. My doctor did not explain the
myeloma is highly prevalent in the African-American
possible implications of the abnormality but told me to find a hematolo-
community, but many people are clueless to this fact. And I've not met
gist. I was taking my time trying to find a blood specialist when my doctor
anyone else in my situation.
called me to follow up a few weeks later on a Sunday evening. It was only
then that I realized that something might be wrong.
In addition, my myeloma is still "smoldering". On the one hand, I have not
had to deal with some of the challenges faced by patients whose disease is
The hematologist performed a bone marrow aspiration and diagnosed me
active. On the other hand, I feel like a ticking time bomb, living and coping
with multiple myeloma. I was 37 years old.
with this diagnosis daily. The isolation can be a bit frightening.
Did you start treatment at that time?
Have you met any other African-Americans with myeloma?
The doctor wanted to start treatment immediately, and recommended
For more than 10 years, I have worked in the fashion industry, holding
that I take thalidomide as part of the anti-myeloma therapy. At that time,
various positions in production and technical departments of major
my husband and I were talking about starting a family. Taking thalido-
fashion labels. In 2005, I penned my first book "The Ins And Outs Of
mide would put an end to our plans. We realized that we needed to seek
The Fashion Industry From A Fashion Insider" about the trials and
another opinion.
tribulations of building and maintaining a career in a very competitive
My ob-gyn told me about Dr. Robert A. Kyle at the Mayo Clinic in
and intense industry called fashion. The book's editor is also black. When
Rochester, MN. Dr. Kyle was exceptionally nice and responsive. He
I told her that I had cancer and was thinking of writing about my myeloma
reviewed my medical records and concluded that my myeloma was of the
journey, she broke down and told me that two of her friends passed away
asymptomatic "smoldering" type and did not require treatment. If I had
from this disease. She is the only person of color I know who had actually
not found a myeloma specialist to review my case, I would have subjected
even heard of myeloma.
my body to unnecessary treatment. Only in hindsight can I truly appreci-
You've remained very private about your diagnosis. Why are you
ate that seeking a second opinion probably added years to my life!
now choosing to speak about it?
Have you received any treatment since?
I'd like to share my story, especially within the black community, in hopes
No, not for myeloma. At one point I developed a painful solitary plasma-
that I can raise awareness of myeloma and encourage people to get more
cytoma on my sternum, which was treated with radiation. By that point, I
regular health screenings. Being diagnosed while my disease is still smol-
was under the care of a local myeloma specialist who was recommended
dering has given me options I would not have had if my myeloma was
by Dr. Kyle. I also have had a small lesion for two years now, but it doesn't
active at diagnosis. And I would recommend that everyone diagnosed
appear to be doing anything so my doctor and I have chosen to just keep
with this cancer seek a second opinion from a myeloma specialist this
an eye on it. Otherwise, I've remained very active in my life. I have blood
certainly made a big difference in my case. And I do understand the type
tests performed every couple of months, and see the specialist if there is a
of strength that is in all of us, which helps us in times of uncertainty, as
shift in my numbers. Right now, if my numbers remain good, I won't need
well as the hope that helps us live life a little brighter each day from our
to see my myeloma doctor for another six months.
new outlook. MT
What has happened to your plans for starting a family?
Editor's Note: If you or someone you know has a story to share with
That has remained a quandary for us. My husband and I have been told
the readers of Myeloma Today, please contact Marya Kazakova at
that trying to conceive might activate my myeloma. My doctor says that
mkazakova@myeloma.org or 800-452-CURE (2873).
800-452-CURE(2873)
17
We speak
your language
The IMF publishes a comprehensive
library of informative myeloma resources.
Used by patients, caregivers, healthcare
professionals, and anyone needing a
reliable source of up-to-date information
regarding the disease, these publications
are critical to a better understanding
of myeloma.
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2010 IMF Calendar of Events
April 21
IMF Patient & Family Seminar Paris, FRANCE
Aug 27-28 IMF Patient & Family Seminar Los Angeles, CA
April 27
IMF Clinical Conference Moscow, RUSSIA
Sept 18
IMF Regional Community Workshop Shreveport, LA
May 13-16 Oncology Nursing Society (ONS) meeting San Diego, CA
Sept 23-24 6th Int'l Serum Free Light Symposium Bath, UK
May 21-22 IMF Patient & Family Seminar Portland, OR
Sept 25
IMF Regional Community Workshop Las Vegas, NV
June 4-8
American Society of Clinical Oncology (ASCO) meeting Chicago, IL
Oct 15-16
MMHÖ/IMF Patient & Family Seminar Vienna, AUSTRIA
June 8-9
International Myeloma Working Group (IMWG) summit Barcelona, SPAIN
Oct 16
IMF Regional Community Workshop Raleigh/Durham, NC
June 9
Robert A. Kyle Lifetime Achievement Award dinner Barcelona, SPAIN
Oct 18
IMF Patient & Family Seminar Bologna, ITALY
June 10-13 European Hematology Association (EHA) meeting Barcelona, SPAIN
October
IMF Patient & Family Seminar Barcelona, SPAIN (date TBD)
Oct 21-23
Southwest Oncology Group (SWOG) meeting Chicago, IL
June 10-13 Eastern Cooperative Oncology Group (ECOG) meeting Washington, DC
Oct 23
IMF Regional Community Workshop Kansas City, MO
July 16-17 IMF Patient & Family Seminar Cincinnati, OH
Oct 23
Myeloma Canada Patient, Family, & Healthcare Professionals
July 23-25 IMF Support Group Leaders' Retreat Dal as, TX
Conference Richmond, BC, CANADA
Aug 8
IMF Regional Community Workshop Honolulu, HI
Nov 5-7
Eastern Cooperative Oncology Group (ECOG) meeting Ft. Lauderdale, FL
Aug 13-14 IMF Patient & Family Seminar Philadelphia, PA
Nov 13
4th Annual Comedy Celebration Los Angeles, CA
Dec 4-6
American Society of Hematology (ASH) Orlando, FL
Additional events/meetings wil be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or cal 800-452-CURE (2873).
IMFLatin America, IMFJapan and IMFIsrael events are not included above.
Thank you for your continued support of the IMF.