Myeloma
Today SUMMER2011
Volume 8 Number 8
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
Dr. C. Ola Landgren, Chief of the Multiple Myeloma Section,
Prof. Michele Cavo, head of the Myeloma Research Unit at
National Cancer Institute (NCI), National Institutes of
the Seragnoli Institute of Hematology (Bologna, Italy) and
Health (NIH), describes the care offered to patients at
a member of the International Myeloma Working Group
NCI/NIH. Several clinical studies being conducted by the
(IMWG) who has recently joined the IMF Scientific Advi-
physicians and scientists at the NCI/NIH aim to improve
survival and quality of life for patients diagnosed with
sory Board, shares some highlights of his work in myeloma
plasma cell disorders, and the medical care for study participants is free
from the early 1980s through the present. He was involved
of charge. Dr. Landgren also discusses his interest in subsequent primary
in pioneering the use of myeloablative allogeneic stem cell transplanta-
malignancies in patients with myeloma, looking at the biology which puts
tion in myeloma, as well as pivotal clinical studies of autologous stem
patients at increased risk of second malignancies (SPMs). PAGE 5
cell transplantation (ASCT). His latest published study compares two
induction therapies before ASCT and consolidation therapy after double-
Dr. S. Vincent Rajkumar, Professor of Medicine at Mayo
ASCT. Prof. Cavo is the lead author of the IMWG overview of the frontline
Clinic (Rochester, MN), talks about the current role of
treatment options in myeloma.
serum free light chain (FLC) analysis in myeloma. He
PAGE 9
explains the four major indications for the FLC assay in
Danny Scott, diagnosed with myeloma five years ago at age
the evaluation and management of myeloma and related
62, has dealt with multiple complications of the disease.
disorders, as highlighted in the published guidelines of
But he made a commitment to fight as hard as he could,
the International Myeloma Working Group (IMWG). Dr. Rajkumar also
and to concentrate on living. That resolve helped Danny
describes a new disease entity called light chain MGUS, which is present
cope with biopsies, chemotherapy, a stem cell transplant,
in approximately 1% of the general population over the age of 50 and can
severe back pain, and a balloon kyphoplasty procedure
be identified with the FLC assay. PAGE 7
to decrease the pain and improve the structural integrity of fractured
Dr. James R. Berenson, Medical and Scien-
vertebrae, plus a second spinal surgery to help restore his height. It took
tific Director of the Institute for Myeloma
until December of 2009 for Danny to achieve remission, and he shares his
and Bone Cancer Research, and Dr. Frank
story so others know that there is hope. PAGE 19
D. Vrionis, Director, Spinal and Skull Base
Oncology at the H. Lee Moffitt Cancer Center,
Also in this issue...
discuss treating spinal fractures with Balloon
Kyphoplasty. They also present the findings of a clinical study that took
Dear Reader by IMF president Susie Novis... PAGE 3
place across 22 sites in the United States, Europe, Australia, and Canada.
Letters to the IMF... PAGE 4
Study patients suffering from the effects of painful vertebral compression
fractures experienced improved quality of life as measured by both physi-
News & Notes... PAGE 11
cal and mental component summaries. PAGE 8
NLB Update... PAGE 13
Supportive Care
Spotlight on Advocacy... PAGE 14
IMF Hotline Coordinators discuss
International Affiliates... PAGE 16
allogeneic (allo) transplantation.
Support Group profiles... PAGE 17
The hope has been that, if suc-
Member Events... PAGE 20
cessful, an allo transplant might
be able to cure myeloma patients.
2011 IMF Calendar of Events... BACK COVER
In recent years, doctors perform-
ing allo transplants have used what is called a "mini-allo" because it is safer
than the full allo transplant. In this approach, the patient first receives an
LOOKING FOR A LOCAL MYELOMA SUPPORT GROUP?
autologous transplant to reduce the tumor burden, followed by reduced-
Please visit our website at myeloma.org or call the IMF at 800-452-CURE (2873).
intensity chemotherapy. PAGE 12
This issue of Myeloma Today is supported by Binding Site, Celgene Corporation, Medtronic, Novartis, and Onyx Pharmaceuticals.
Inter
P
nationallaceholder
Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Loraine Boyle
Benson Klein
Charles Newman
Dr. S. Vincent Rajkumar
Igor Sill
Mark Di Cicilia
Dr. Robert A. Kyle
Susie Novis
Matthew Robinson
Allan Weinstein
Donna Feig
Dr. Edith Mitchell
John O'Dwyer
E. Michael D. Scott
Amy Weiss
Michael S. Katz
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors
Raymond Alexanian, USA
Thierry Facon, France
Antonio Palumbo, Italy
Kenneth C. Anderson, USA
Dorotea Fantl, Argentina
Linda Pilarski, Canada
Michel Attal, France
Jean-Paul Fermand, France
Raymond Powles, United Kingdom
Hervé Avet-Loiseau, France
Rafael Fonseca, USA
S. Vincent Rajkumar, USA
Dalsu Baris, USA
Gösta Gahrton, Sweden
Donna Reece, Canada
Bart Barlogie, USA
Morie A. Gertz, USA
Paul Richardson, USA
Régis Bataille, France
John Gibson, Australia
Angelina Rodríguez Morales, Venezuela
Meral Beksaç, Turkey
Hartmut Goldschmidt, Germany
David Roodman, USA
William Bensinger, USA
Roman Hájek, Czech Republic
Jesús San Miguel, Spain
James R. Berenson, USA
Jean-Luc Harousseau, France
Orhan Sezer, Germany
Leif Bergsagel, USA
Joy Ho, Australia
Kazayuki Shimizu, Japan
Joan Bladé, Spain
Vania Hungria, Brazil
Chaim Shustik, Canada
Mario Boccadoro, Italy
Sundar Jagannath, USA
David Siegel, USA
Michele Cavo, Italy
Douglas Joshua, Australia
Seema Singhal, USA
J. Anthony Child, United Kingdom
Michio M. Kawano, Japan
Alan Solomon, USA
Raymond L. Comenzo, USA
Henk M. Lokhorst, The Netherlands
Pieter Sonneveld, The Netherlands
John Crowley, USA
Sagar Lonial, USA
Andrew Spencer, Australia
Franco Dammacco, Italy
Heinz Ludwig, Austria
A. Keith Stewart, USA
Faith Davies, United Kingdom
Jayesh Mehta, USA
Guido J. Tricot, USA
Meletios A. Dimopoulos, Greece
Håkan Mellstedt, Sweden
Benjamin Van Camp, Belgium
Johannes Drach, Austria
GiamPaolo Merlini, Italy
Brian Van Ness, USA
Brian G.M. Durie, USA
Gareth Morgan, United Kingdom
David Vesole, USA
Hermann Einsele, Germany
Nikhil Munshi, USA
Jan Westin, Sweden
Amara Nouel, Venezuela
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
Grassroots Liaison
Regional Director,
Webmaster
Betty Arevalo
Meghan Buzby
Support Groups
Abbie Rich
(marevalo@myeloma.org)
(mbuzby@myeloma.org)
Andrew Lebkuecher
(arich@myeloma.org)
Director of Advocacy
Regional Director, Support Groups
(alebkuecher@myeloma.org)
Major Gifts Officer
Arin Assero
Regional Community Workshops
Specialty Member
James Ross
(aassero@myeloma.org)
Kelly Cox
Services Coordinator
( jross@myeloma.org)
Director of Member Events
(kcox@myeloma.org)
Kemo Lee
IT Systems Admin
Suzanne Battaglia
Hotline Coordinator
(klee@myeloma.org)
Thomas Shin
(sbattaglia@myeloma.org)
Paul Hewitt
Director of Annual Giving
(tshin@myeloma.org)
Hotline Coordinator
(phewitt@myeloma.org)
and Social Media
Regional Director,
Nancy Baxter
Meeting & Event Services
Randi Lovett
Support Groups
(nbaxter@myeloma.org)
Spencer Howard
(rlovett@myeloma.org)
Robin Tuohy
Hotline Coordinator
(SHoward@SignatureEventsLA.com)
Development Intern
(tuohy@snet.net)
Debbie Birns
Publications Editor
Kerri Lowe
State Government Affairs
(dbirns@myeloma.org)
Marya Kazakova
(klowe@myeloma.org)
Christina Vargas
Regional Director,
(mkazakova@myeloma.org)
Publication Design
(cvargas@myeloma.org)
Support Groups
Hotline Coordinator
Jim Needham
Projects Manager
Joanie Borbely
Missy Klepetar
( jneedham@myeloma.org)
Judy Webb
( jborbely@myeloma.org)
(mklepetar@myeloma.org)
Data Specialist,
( jwebb@myeloma.org)
European Programs
Accountant
Office Manager
Gregor Brozeit
Phil Lange
Selma Plascencia
(greg.brozeit@sbcglobal.net)
(plange@myeloma.org)
(splascencia@myeloma.org)
2
myeloma.org
A Message from the President
Dear Reader,
Summer is the time of year when things really begin to "bear fruit,"
At the second annual IMF IMWG
and it couldn't be more true this year in myeloma. In 2011, the 13th
Summit,
myeloma
experts
bi-annual International Myeloma Workshop (IMW) took place in
assembled in London for two
May in Paris, France. The IMW has come a long way from the first
days to focus on answering 6
workshop, which was held in the late 1980s in London. At that meet-
Key Questions:
ing, a handful of myeloma experts gathered to discuss the status of
1. Diagnosis & Management
myeloma treatment and research. Over the past two decades, interest
of High-Risk Smoldering
in myeloma has exploded from that initial small group of experts to
Myeloma
over 2,500 clinicians and scientists attending IMW XIII in Paris.
2. Induction Therapy
While there were many impressive presentations at IMW XIII, the size
Sequential vs. Curative
alone no longer allows for detailed discussions. Thankfully, there are
Strategies: Testing 2- vs. 3-
vs. 4-drug combinations
other forums where myeloma experts can "roll up their sleeves" and
really go to work. I'm very proud to say that one such forum is the
3. Role of Early Transplant
IMF's International Myeloma Working Group (IMWG) Annual Summit
4. Maintenance or Consolidation?
that took place in June in London, England.
5. Integrating New & Existing Drugs into the Myeloma
Treatment Paradigm
Founded by the IMF, the IMF's IMWG held its first meeting at the 2001
6. Risk Stratification in Myeloma
American Society of Hematology (ASH) annual meeting. The idea
behind forming IMF's IMWG was to create a forum where myeloma
There is no other group in the world like the IMWG. It is truly ground-
experts from around the world could meet to collaborate on both
breaking in its scope, mission, commitment, and output. This group
translational and lab research projects. There was one caveat: they had
is really moving research forward, achieving results and showing the
to produce results.
world that progress can be made when people stay focused and work
together in a collaborative way.
Over the years, members of the IMF's IMWG have been incredibly
productive. As of this writing, 33 papers have been published in peer-
In the Summer of 2011, my message to all of you who are living with
reviewed journals and two more are "in press." This body of work has
myeloma, and coping with its many challenges, is... do not lose faith.
dramatically changed the way myeloma patients are diagnosed, staged,
The IMF and the IMF's IMWG are working very hard, and as fast as we
treated, and monitored. The published papers have also focused on
can, to advance research that will improve outcomes and quality of life
managing disease complications. No one else in the world has put
of myeloma survivors, and we will find a cure for this disease.
together a dream team like the IMF's IMWG, comprised of the most
Susie Novis
brilliant and accomplished scientists and clinicians whose passion
and commitment is evident in their dedication and, most importantly,
in their results. No other myeloma forum in the world has been
this prolific!
President
In Memoriam
Ty Jurras
1916 2011
Ty Jurras, the founding editor of Myeloma Today, created the
"Dear Reader" column and was its first author. In the early
days of the IMF, Ty worked closely with Brian Novis and helped
organize the first IMF Clinical Conference for physicians, which
was held in June 1992 in Phoenix, AZ. Ty's care, time, and talents
have made an impact on the IMF that continues to be felt today.
800-452-CURE(2873)
3
Let ers to the IMF
Letters to the IMF President
IMF initiatives in Asia
Dear Susie,
Congratulations regarding your success in building the bridge between
the IMF and health ministry officials in the People's Republic of China.
At the end of your Dear Reader message that
appeared in the Summer 2010 issue of Myeloma
I am a multiple myeloma patient, and am also an adoptive father of two
Today, you wrote... "with hope, happiness, and a
girls, ages 7 and 13, from China. The IMF website was almost a first step
true sense of family." So I decided to stop procras-
for me in gathering information about myeloma when I was diagnosed
tinating and write you this letter.
in November 2008. I have found myself at the site almost daily for the
pertinent news and guidance. I have great trust in what you tell me. I can't
Very belatedly, I want to thank you so much for
thank all of you at the IMF enough for your herculean efforts in educating
calling our house when I was admitted to the hospital. When my husband
patients and caregivers, and supporting the battle against myeloma. And
told me that you called on behalf of yourself and Dr. Durie, offering your
thank you for promoting hope, courage, and honesty in this struggle.
wishes and prayers of support, I actually cried. I know that you are one
super-busy lady and that you took time out of your busy schedule to call
On a personal note, one of my dreams is to travel back to the Chinese
touched us both so much. You and the rest of the wonderful folks at the
mainland with my family for an extended visit to share, in a meaningful
IMF do give me hope, share in my happiness, and offer me a true sense of
way, my children's cultural heritage with them. To know that myeloma
family. You being there for me and my fellow myeloma warriors and our
isn't a proverbial `unknown' condition in China and that there will be
loved ones means the world to all of us.
an IMF presence there, is comforting. Godspeed with your endeavors in
the PRC!
Thanks again for EVERYTHING, Susie! Your dedication and support are
much appreciated and will never be forgotten.
Sean Murray
Valerie Stevenson
Dear Susie,
If you would like to share your thoughts with the IMF or with readers
of Myeloma Today, or if you wish to suggest or contribute future content
I had to write this letter to let you
for this newsletter, please contact:
know how grateful we were to be
Marya Kazakova Publications Editor
invited to the IMF Patient & Family
International Myeloma Foundation
Seminar in Boca Raton, FL. My
12650 Riverside Drive, Suite 206
wife Mary Lou and I have been to
North Hollywood, CA 91607
other meetings, and this one was
mkazakova@myeloma.org
the best. I have multiple myeloma,
non- Hodgkin's cutaneous T-cell lymphoma (CTCL), and pre-cancer. At
the seminar, we were with other people who can understand how we
feel and talk the same talk. We met many people during the breaks and
at our dinner table, and we could relate so much to them. You have to be
in someone's shoes to really understand. We liked the idea of the patient
IMF Staff Update
and caregivers meetings Friday morning. We got a lot out of this. Susie,
The IMF is pleased to welcome Judy
we just wanted to say that you have done a great job running this event.
Webb as our new Project Manager.
You had us laughing so much, and we all needed a good laugh. You could
Judy comes to the IMF after practic-
be an emcee at a Vegas hotel casino, but don't do that, because the IMF
ing for 10 years as a veterinarian,
needs you.
followed by 14 years in the animal
Gerard ( Jerry) L. Lefebvre
healthcare industry working for
IDEXX Reference Laboratories. Her
IMF Hotline
role at the IMF is to consolidate and
Hi Paul,
coordinate the project management,
logistics, and administration of the
Thank you for all of the information you shared. All of it was EXTREMELY
many programs and services offered by
helpful and my whole family remains so grateful for the IMF. We were able
the foundation. Judy, who is originally
to make much more informed decisions about treatment options. I really
from Boston, lives in Los Angeles with
can't tell you how wonderful it is just to get information that feels clear.
her husband, their two cats, and two
The complexity of the disease and treatment definitely compounds the
Golden Retrievers. MT
emotional stress of the process. So truly truly, thank you!
Lee Sunday Evans
4
myeloma.org
Scientific & Clinical
MYELOMA TODAY IN CONVERSATION WITH C.OLA LANDGREN, MD, PHD
In brief, please tell us about your medical
enrolled in our trials, and we are seeing more and
background.
more patients coming to us for assessment and
By training, I am a medical doctor and a trained
treatment. We are very interested in correlative sci-
clinical hematologist, and I also hold a doctorate
ence, genetic changes in tumor cells, biomarkers,
from the Karolinska Institute in Stockholm, Sweden.
and novel imaging modalities. We are developing
I worked at the Karolinska Institute as an attend-
new "targeted therapies" and new combinations
ing physician and conducted clinical research for
of existing therapies that aim to inflict effective
several years before coming to the US. In 2004,
damage on abnormal plasma cells without causing
I came to the National Cancer Institute (NCI),
a wide range of toxicities that affect the patient's
National Institutes of Health (NIH), Division of Can-
healthy cells. We are conducting preclinical, clini-
cer Epidemiology and Genetics (DCEG), where I
cal, and population-based studies to prevent, cure,
worked as an Investigator before joining the Medical
or delay plasma cell disease processes, and at the
Oncology Branch. Scientifically, as reflected by my
same time, to answer important research ques-
publications, my major research interests are in the
tions. All of our clinical studies are developed and
treatment, causation, diagnostics, and prognostics,
conducted by the physicians and scientists at the
and natural history of multiple myeloma and its
NCI/NIH. All our studies are based on new drugs
precursor condition, monoclonal gammopathy of
and new strategies for clinical management.
undetermined significance (MGUS). My particular
Because the NCI/NIH is part of the Department
interest in the trajectory from precursor to full-
C. Ola Landgren, MD, PhD
of Health and Human Services (HHS), which is
blown hematologic malignancies, molecular path-
Chief, Multiple Myeloma Section
a United States federal government agency, for
ways underlying progression, and the development
National Cancer Institute (NCI)
patients participating in our studies, al costs
of targeted strategies aiming to delay, prevent, and
National Cancer Institute (NIH)
Bethesda, MD
related to medical care, treatment, and follow-up
cure full-blown disease.
of that study, are paid for by the NCI/NIH inde-
What is your current professional position?
pendent of medical health care insurance status. Thus, for patients who
participate in a study, all care is free of charge. Patients do not need to
I am a Senior Investigator and Attending Physician at the Intramural
have health insurance to be treated here.
program of the NCI/NIH, and the Chairman of the Scientific Review Com-
mittee at the Medical Oncology Branch and Affiliates at NCI. I am Chief of
We welcome patients to participate in our clinical trials. We also welcome
the Multiple Myeloma Section at NCI/NIH in Bethesda, MD.
patients for second opinion visits. We try to find the best treatment avail-
able for each patient, and our clinical staff provides individualized care to
Please tell us about the work of the NCI/NIH Multiple Myeloma
all who are assessed and/or treated here.
Section.
We provide expert clinical care, treatment, imaging, and follow-up for
Do you mean to say that there are no costs at all incurred by the
patients with plasma cell disorders and related diseases. Most of our patients
patients you work with?
have monoclonal gammopathy of undetermined significance (MGUS),
This is one way in which our program is different from others. Patients
smoldering multiple myeloma (SMM), newly diagnosed or relapsed/refrac-
come to us from all 50 states. They are responsible for travel costs associ-
tory multiple myeloma. But we also work with patients who have other
ated with their initial screening visits, but the medical care for patients
plasma cell disorders,
who participate in a clini-
such as Waldenström's
cal study is free of charge.
Because the NCI/NIH is part of the Department of Health and Human
macroglobulinemia (WM)
Patients receive a top-of-
and amyloidosis, as well
Services (HHS), which is a United States federal government agency, the-line clinical work-up,
as several rare conditions
for patients participating in our studies, al costs related to medical
with blood-based and bone
(e.g., heavy chain disease,
marrow-based markers, as
care, treatment, and fol ow-up of that study, are paid for by the
necrobiotic xantogranu-
well as high-quality imaging
NCI/NIH independent of medical health care insurance status.
loma, HIV-related plasma
and very rigorous molecular
cell dyscrasias).
Thus, for patients who participate in a study, al care is free of charge. profiling. We use all types of
Patients do not need to have health insurance to be treated here.
the latest technologies.
Our research section has
several ongoing studies
In most cases, once a patient
that aim to improve survival and quality of life for patients diagnosed
is enrolled in a clinical trial, the NCI pays the transportation costs for
with plasma cell disorders. At present, there is a lot of exciting research
all subsequent study-related visits for patients who do not live in the
taking place in myeloma and related disorders, and we are happy to be
local area. In addition, these patients might receive a small per diem
able to make a contribution. We have close to 150 patients currently
CONTINUES ON PAGE 6
800-452-CURE(2873)
5
Scientific & Clinical
C. OLA LANDGREN, MD, PHD -- continued from page 5
to help offset the costs of meals and lodging if they are being treated
myeloma patients since the 1970s, although underlying biological mecha-
as outpatients.
nisms are poorly understood. The aims of this study include defining the
risk of primary malignancies subsequent to myeloma compared to the
Please tell us about some of the research projects at your center.
general population. For the first time, we aim to assess role of treatment
We are pursuing a very comprehensive range of investigations, all of which
and non-treatment-related factors on the risk of subsequent primary
are based on solid science, not far-flung experimentation. We have already
malignancies in patients with multiple myeloma.
presented some very interesting data, and we are currently engaged in
many ongoing studies. One protocol, which started enrolling in May 2010
The Swedish Data Bank covers approximately
and will eventually include a total of 250 patients, will follow patients for
10,000,000 people over the period of 20 years
5 years. The molecular profiling from this investigation should yield some
robust data for us to communicate next year.
(19862005), tracking more than 95% of patients
with myeloma from this time period.
We have been interested in the molecular mechanisms of the anti-myeloma
effects which happen in myeloma patients who receive an allogeneic
We are assessing the risks of developing another malignancy before/after
transplant. We now know that, to a large degree, the anti-myeloma effect
1995, that is, before and after the introduction of high-dose melphalan
works through certain immune cells, such as natural killer cells from the
plus autologous stem cell transplant (ASCT) as a treatment option for
donor, which go after the patient's myeloma cells. Consequently, we have
myeloma in Sweden. We are looking not only at the risk of second tumors,
developed treatment strategies to mimic the mechanisms that cause this
but also at the type of second tumors. We are also examining the role of
anti-myeloma effect in allogeneic transplant, without giving the transplant.
host- and myeloma-related factors. It is very important that we answer
The approach gives the patient repeated anti-KIR monoclonal antibody
these questions. So far, our finding supports a role for non-treatment-
infusions to trigger an immune response to his or her cancer cells. As part
related factors, but longer follow-up is needed to better define second
of our ongoing studies, we have started using this strategy to treat patients
tumor risks in the era of novel therapies.
with SMM. The aim is to delay or prevent the disease from progressing
into full-blown myeloma. Results of this first stage of the study should
For the first time, we aim to assess role of treatment
be ready for presentation at the December, 2011, annual meeting of the
and non-treatment-related factors on the risk of
American Society of Hematology (ASH). The second stage of this study will
most likely be initiated in the Fall of 2011.
subsequent primary malignancies in patients
with multiple myeloma.
We are also working on improving imaging. A molecular imaging study,
which opened in November of 2010, is using advanced imaging technolo-
As part of my investigation, I also examined the data of 6,000 MGUS
gies to evaluate and manage patients with various stages of plasma cell
patients that I identified when I worked at the Karolinska Institute.
diseases. We are conducting PET-CT-based and MRI-based investigations
Because MGUS patients do not receive anti-myeloma therapies, this
to define disease burden and risk of progression at various clinical disease
group serves as a negative control. I found a six-fold increase in the risk
states. Our aim is to develop more sensitive and more specific imaging
of acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) in
tracers. The data from this study should also be ready for presentation at
this untreated population. This suggests that individuals with plasma cell
the 2011 ASH meeting.
dyscrasias might have an underlying biology that puts them at increased
This year, we are opening a clinical trial of carfilzomib in newly diagnosed
risk of AML/MDS.
myeloma patients. After induction/consolidation therapy, patients will be
Thank you. Any closing comments?
on extended dosing for a period of one year. We are going to correlate this
As researchers, we want to know what works and why it works. At NCI/
with minimal residual disease (MRD) to determine how close we can get
NIH, we are very fortunate to have an excellent staff, which is why our
to actually getting rid of this disease.
program has been able to grow at such a fast pace. But, ultimately, we are
In addition, we have two treatment studies for relapsed/refractory
here to serve patients, and we welcome people to come to our clinical
patients: one with an oral MEK inhibitor, the other with oral mTOR and
center for second opinions and/or to participate in our investigator-
HDAC inhibitors. There is a lot going on at our center.
initiated protocols. For more information, I would recommend that inter-
You have had an interest in subsequent primary malignancies in
ested individuals contact our Lead Research Nurse, Mary Ann Yancey, RN,
patients with myeloma. Would you share with us some key points
at yanceym@mail.nih.gov or 301-435-9227, or visit our website at
of your presentation on this topic at the International Myeloma
multiplemyeloma.cancer.gov. MT
Workshop XIII in Paris, France?
Editor'sNote: Dr. Landgren is the recipient of the 2010 NCI Bench-to-Bedside
In collaboration with my colleagues in Scandinavia, we have collected a
Award, as well as numerous other honors and scientific recognitions. He is a
lot of high-quality population-based data. The Swedish Data Bank covers
member of the Editorial Board of Haematologica/The Hematology Journal,
and is a popular lecturer and presenter. Dr. Landgren has authored more
approximately 10,000,000 people over the period of 20 years (1986-2005),
than 100 peer-reviewed original articles, as well as many peer-reviewed
tracking more than 95% of patients with myeloma from this time period.
review and editorial articles. He is the lead NCI principal investigator of
Increased frequency of myeloid malignancies has been noted among
several clinical trials.
6
myeloma.org
Scientific & Clinical
THE CURRENT ROLE OF SERUM FREE LIGHT CHAIN ANALYSIS IN MYELOMA
Myeloma Today in conversation with Dr.S.Vincent Rajkumar
What is serum free light-chain analysis?
Is the FLC assay used in risk stratification of
The FreeliteTM serum immunoglobulin free light
myeloma patients?
chain (FLC) assay measures levels of free kappa ()
Not much. There are many tests that can predict
and lambda () immunoglobulin light chains, which
prognosis in myeloma. We, for example, risk-
are not bound to heavy chains. Measurements of cir-
stratify patients predominantly using cytogenetics
culating monoclonal immunoglobulins (M-proteins)
and FISH (fluorescence in situ hibridization). But
are the mainstay of diagnosis, prognosis, and manage-
FLC is one of the valuable prognostic markers
ment of multiple myeloma and related clonal plasma
we have in our testing arsenal for myeloma. For
cell disorders. In the FLC assay we measure both
example, high levels are associated with increased
and free light chains and look at the ratio between
likelihood of renal failure, and we tailor our treat-
the two levels. If the ratio is abnormal (<0.26 or
ments to keep the FLC levels under control.
>1.65), the patient is presumed to have an excess of
Are there any drawbacks to serum FLC
lambda or kappa monoclonal free light chains. The
testing?
FLC test has proven utility in several settings.
The serum FLC is a valuable assay as I discussed
What is the current role of serum free light-
earlier, but there are some technical limitations.
chain analysis in myeloma?
These include lot-to-lot variation and assay impre-
As highlighted in the published guidelines of the
cision. Dr. Jerry Katzmann from our group is
International Myeloma Working Group (IMWG) by
S. Vincent Rajkumar, MD
studying this carefully, and will soon have results
Professor of Medicine
quantifying the variability of the FLC assays, as
Dr. Angela Dispenzieri and colleagues, there are four
Mayo Clinic
well as other assays that we currently use to
major indications for the FLC assay in the evaluation
Rochester, MN
monitor patients.
and management of myeloma and related disorders:
Have any new uses for the FLC assay been identified since the
In the context of screening for the presence of myeloma or related
publication of the IMWG guidelines?
disorders, the serum FLC assay in combination with serum protein
electrophoresis (SPEP) and immunofixation (IFE) has high sensitivity,
Recently, we described a new disease entity called light chain MGUS,
and negates the need for 24-hour urine studies for diagnoses other than
which is present in approximately 1% of the general population over the
when light-chain amyloidosis (AL amyloidosis) is suspected. If a plasma
age of 50.
cell disorder is diagnosed, however, 24-hour urine studies are required
Light chain MGUS is the likely precursor of approximately 20% of
for all such patients.
myeloma that are considered "light-chain only" and defined by absence of
IgH expression. Light chain MGUS is not a condition we are screening for,
Second, the FLC assay is of major prognostic value in a variety of plasma
nor do we recommend such screening. Rather, it is something that can be
cell disorders, including monoclonal gammopathy of undetermined sig-
identified incidentally when patients are tested with the FLC assay. Like
nificance (MGUS), smoldering multiple myeloma (SMM), active myeloma,
regular IgH MGUS, light chain MGUS has a small chance of progressing
immunoglobulin light-chain amyloidosis, and solitary plasmacytoma. We
to myeloma. In fact, in our study, we found that patients with light chain
particularly use the FLC assay for risk stratification of MGUS and SMM.
MGUS had a 0.3% chance per year of progressing to myeloma. This is a
Third, the FLC assay allows for quantitative monitoring of patients with
lower rate of progression than patients with IgH MGUS. At Mayo Clinic,
oligosecretory (low secreting) plasma cell disorders, including patients
we recommend that patients with light chain MGUS be monitored for
with AL amyloidosis, oligosecretory myeloma, and nearly two-thirds
progression every 12 months.
of patients who have previously been deemed to have non-secretory
What's next for serum FLC assays?
myeloma based on the results of protein electrophoresis. In AL amyloido-
We need to establish the role of the FLC assay in monitoring response
sis patients, serial FLC measurements outperform protein electrophoresis
in patients who have measurable M proteins. We also need to define the
and immunofixation, and a reduction in FLC levels by >90% is the desired
clinical relevance of early FLC "response" or "relapse" in such patients. We
goal of therapy. In patients with oligosecretory myeloma, measurement of
should determine the underlying biologic basis for the ability of the FLC
FLC is essential. Although this has not been formally validated, it is widely
assay to predict risk of progression in MGUS, SMM, etc.
acknowledged in clinical practice that serial FLC measurements reduce
the need for frequent bone marrow biopsies in such patients. The FLC
We have heard of another test called the HevyliteTM assay. What can
assay has not yet replaced the 24-hour urine protein electrophoresis for
you tell us about this?
monitoring myeloma patients with measurable M-proteins by serum or
The HevyliteTM assay gives us a quantitative measurement of IgG kappa,
urine PEP.
IgG lambda, IgM kappa, IgM lambda, IgA kappa and IgA lambda separately.
Fourth, the kappa/lambda FLC ratio (rFLC) is a requirement for docu-
The Hevylite assay appears to be able to precisely measure very low levels
menting
of myeloma since the kappa/lambda ratios of the involved immunoglobu-
stringent complete response (sCR) according to the IMWG's
lins can be measured and tracked. We are likely to see numerical data from
Response Criteria. Several myeloma clinical trials in the US and Europe
clinical studies using the Hevylite test to evaluate patient prognosis and
have already reported sCR data, and many ongoing trials are collecting
response to treatment in the near future.. MT
this information.
800-452-CURE(2873)
7
Scientific & Clinical
TREATING SPINAL FRACTURES WITH BALLOON KYPHOPLASTY
Myeloma Today in conversation with Drs. James Berenson and Frank Vrionis
Dr. Berenson, you are the prin-
bone, pressing the soft inner bone
cipal investigator of the first ran-
against the outer wall and raising
domized, controlled trial compar-
the collapsed vertebral body in an
ing Kyphon® Balloon Kyphoplasty
attempt to return it to its correct
with non-surgical care in treating
position. Inflation of the balloon
spinal fractures in cancer patients.
creates a space (cavity) inside the
Please tell us about it.
fractured vertebra, which is then
Dr. Berenson: The study, known
filled with a bone cement. The
as CAncer Patient Fracture Evalu-
balloon functions as a "container"
ation (or CAFE), was published
for the cement. Once the cement
on February 17 in the online edi-
hardens, it restores vertebral body
tion of The Lancet Oncology. The
height in the compressed body
CAFE study took place across 22
and stabilizes the fracture, hold-
sites in the United States, Europe,
ing the vertebral body in place.
Australia, and Canada. We con-
Patients usually experience imme-
ducted a randomized trial com-
James R. Berenson, MD
Frank D. Vrionis, MD, MPH, PhD
diate reduction of pain.
Director, Spinal and Skull Base Oncology
paring balloon kyphoplasty versus
Medical and Scientific Director
How does balloon kyphoplasty
Institute for Myeloma and
H. Lee Moffitt Cancer Center
non-surgical fracture management
Professor, Neurosurgery & Orthopaedics differ from other surgical
Bone Cancer Research
for treatment of painful vertebral
West Hollywood, CA
Univ of S Florida College of Medicine
therapies for vertebral
body compression fractures in 134
Tampa, FL
compression fractures, such as
patients with cancer. Patients had 1-3 symptomatic fractures. Participants had
vertebroplasty?
various types of cancer, including multiple myeloma.
Dr. Vrionis: Vertebroplasty is designed to stabilize the fracture without cor-
In the CAFE study, 70 patients were randomized to the Kyphon® Balloon
recting vertebral body deformity or providing a controlled fill and distribution
Kyphoplasty group and 64 patients were randomized to a non-surgical
of bone cement. Under high pressure in a fixed space, the cement may spread
control group. As medically appropriate, members of both groups were able
outside the vertebral body, which can cause significant side effects. With
to receive non-surgical care, such as pain medications, rest, bracing, walking
balloon kyphoplasty, inflation of the balloons compacts the bone, which may
aids, and radiation therapy. Following the primary endpoint after one month
fill fracture lines and restore height in the compressed vertebral body. The
of follow up, patients randomized to non-surgical management were allowed
presence of the space also allows a more viscous bone cement to be injected
to undergo balloon kyphoplasty.
under low manual pressure with reduced risk of cement leakage.
Please tell us more about the procedure
There was a roundtable discussion on
from the perspective of a surgeon.
this subject, held in Paris at the time
Dr. Vrionis: Approximately 70% of patients
of the recent International Myeloma
with myeloma present with fractures. Most
Workshop (IMW), which aims to
of these fractures are lytic, which means that
incorporate the analysis of the CAFE
there is bone loss. Some fractures can be
study in a consensus statement. What is
quite serious, with a risk of cord compres-
your opinion on the benefits of balloon
sion and kyphotic deformities (curvatures).
kyphoplasty?
Pain can be a substantial issue that has an
Dr. Berenson: One limitation of the CAFE
impact on the patient's quality of life and
study is that randomization of treatment
A hollow instrument is used to create a small pathway into
their ability to undergo the necessary cancer
lasted for only the first month, although this
the fractured bone. A small, orthopaedic balloon is guided
treatment.
through the instrument into the vertebra. The incision site is
is considered to be a standard timeframe to
Balloon kyphoplasty can be performed
approximately 1 cm in length
assess safety and improvements in pain and
under either local or general anesthesia. It
function. After one month, patients from
is a minimally invasive procedure that is safe
the control group were allowed to receive
and well-tolerated. During the procedure, a
balloon kyphoplasty and the majority (38
hollow needle is inserted into the vertebral
of 64, or 59%) chose to do so. Another
body, making a small pathway into the
potential limitation of the trial was that
fractured bone. Generally, two such work-
we did not perform a sham operation for
ing pathways are used, one on each sides
patients randomized to initial non-surgical
of the vertebral body, to better support
management.
the bone and increase the likelihood of
There was an article in the recent The
deformity correction. An orthopedic bal-
New England Journal of Medicine stating
loon is then placed inside the fractured Next the balloon is carefully
The cavity is filled with bone
that vertebral compression fracture treat-
vertebra through each pathway. The bal- inflated in an attempt to raise
cement and is designed to
ment is ineffective because the osteoporosis
loon is carefully inflated inside the fractured the collapsed vertebra and
form an internal cast to hold
restore vertebral body height.
the vertebra in place.
CONTINUES ON PAGE 10
8
myeloma.org
Scientific & Clinical
SCIENTIFIC ADVISOR PROFILE
Myeloma Today in conversation with Prof. Michele Cavo
Please tell us a bit about your medical
At what point did you begin to study novel agents?
background and current position.
In the late 1990s, the landscape of myeloma therapy was
I received my medical degree, as well as the post-
dramatically changed by the report that thalidomide had
graduate residency in Hematology, from Bologna
remarkable activity in relapsed/refractory myeloma. Based
University School of Medicine in Bologna, Italy. In
on these exciting results obtained in advanced phases
1991, I became Assistant Professor of Hematology.
of the disease and the lack of toxicity of thalidomide on
Currently, I am Associate Professor of Hematology
hematopoietic stem cells. I explored the activity of this
at Bologna University School of Medicine and Head
novel agent as induction therapy for newly diagnosed
of the Myeloma Research Unit at Seràgnoli Institute
patients who were eligible to receive ASCT. The challenge
of Hematology. From January 2000 to June 2005, I
was to use an effective oral regimen incorporating thalido-
was appointed Director of postgraduate residency
mide plus dexamethasone (TD) instead of the infusional
in Hematology at the University School of Medicine
VAD regimen, which at that time was the standard induc-
in Bologna. Between 2004 and 2009, I served as
tion therapy in preparation for subsequent ASCT. Results
Treasurer on the board of the Italian Society of Hema-
of this pivotal study showed the superiority of TD over
tology. Since 2004, I have co-chaired the GIMEMA
VAD in terms of overall response rates (ORR) and were
(Gruppo Italiano per lo Studio delle Malattie EMato-
published in Blood in 2005. The study was introduced
Michele Cavo, MD
logiche dell'Adulto) Italian Myeloma Network.
Seràgnoli Institute of Hematology
by an Inside Blood article titled "Multiple myeloma: the
How did you come to be interested in multiple
Bologna University School of Medicine
death of VAD as initial therapy." Really, this study changed
myeloma?
Bologna, Italy
the treatment paradigm for transplant-eligible myeloma
My degree thesis was about myeloma therapy, so I have been involved in this
patients since it provided the first demonstration of the
field since the very beginning of my work in medicine. I have devoted many
benefits offered by incorporation of novel agents into induction therapy
years to the biology and the treatment of myeloma.
before ASCT. More recently, I published in the Journal of Clinical Oncology
the results of the "Bologna 2005" study showing the superior outcomes for
What were the available treatment options for patients at that time?
patients receiving TD from the outset until the second ASCT in comparison
Soon after I received my medical degree, efforts to improve clinical outcomes
with patients treated with double ASCT without the incorporation of TD.
for myeloma patients involved the use of different combinations of cytotoxic
What has been the focus of your more recent work?
drugs given at conventional doses. The early 1980s, when I started my work
as hematologist at Seràgnoli Institute, was the era of pilot studies exploring
My latest study, published in Lancet in December 2010, was a large phase
the feasibility and activity of high-dose melphalan followed by autologous
III clinical trial comparing TD with VTD (TD plus Velcade® [bortezomib]) as
hematopoietic stem cell transplantation. Since the mid 1980s, I was directly
induction therapy before and consolidation therapy after double ASCT. The
involved in pioneer studies of myeloablative allogeneic (allo) stem cell trans-
primary endpoint was the rate of CR after TD or VTD induction therapy. Pub-
plantation in myeloma. In 1984, the Bologna team performed one of the first
lished results showed that after two months of induction therapy the CR rate
allo transplants for myeloma in Europe. The patient was a young female who
with VTD was threefold higher than with TD. Importantly, high-dose therapy
received the graft from her HLA-identical sister.
with ASCT further enhanced the rate of CR in the VTD arm as compared to
the TD arm, suggesting that novel agents and ASCT are complementary proce-
What direction did your subsequent work in myeloma take?
dures. An additional important finding was that the VTD regimen retained its
My subsequent work was addressed at investigating prognostic factors and
superior activity in comparison with TD when used as consolidation therapy
alternative treatment strategies for myeloma patients. For example, in 1989,
after ASCT. The final rate of CR was 62% in the VTD arm as compared to
I published in Blood one of the first reports on the prognostic relevance of
45% for patients randomized to the TD arm of the study. As a result of the
thrombocytopenia and the value of platelet counts in refining the prediction
significantly higher rate of CR associated with VTD and double ASCT, the
of prognosis established by the Durie/Salmon Staging System. Many subse-
3-year estimate of PFS was in the 70% range, which is one of the best results
quent studies have independently confirmed the value of platelet counts as a
reported so far with incorporation of novel agents into ASCT.
prognosticator in myeloma. At the same time, I designed and chaired several
What about patients with poor prognostic factors?
multicenter Italian studies of chemotherapy both at conventional doses, such
as the alternating combination of vincristine, adriamycin, dexamethasone
The remarkable activity of VTD as induction and consolidation therapy
(VAD) and melphalan-prednisone (MP), and at high-doses requiring autolo-
combined with double ASCT was retained in all poor prognosis subgroups
gous stem cell transplantation (ASCT). The "Bologna 2002" clinical trial was
of patients, including those with high-risk cytogenetic profiles, such as the
one of the first studies designed to prospectively compare a single vs. double
presence of t(4;14) with or without del(17p). When we performed a separate
ASCT as upfront therapy for patients 65 years of age and younger. Final
analysis of PFS in patients who carried t(4;14), we found that VTD plus double
results of this study were published several years ago in the Journal of Cinical
ASCT was able to completely overcome the poor prognosis associated with
Oncology and showed the superiority of double over single ASCT in terms
this cytogenetic abnormality. The PFS curves for patients with and without
of increased rate of complete response (CR) and extended progression-free
t(4;14) were almost super-imposable in the VTD arm of the study, while
survival (PFS). In particular, the major benefits from double ASCT were seen
t(4;14) retained its adverse impact on prognosis in the TD arm.
in those patients who failed CR after the first ASCT.
CONTINUES ON PAGE 10
800-452-CURE(2873)
9
Scientific & Clinical
BALLOON KYPHOPLASTY-- continued from page 8
patients in randomized blinded trials testing vertebroplasty for vertebral
experienced significant benefits in early pain reduction, improved mobility,
compression fractures showed no significant benefit and, as a result, sug-
and ability to take part in activities. Seven days after treatment, balloon kypho-
gested that insurance companies and Medicare should not cover these proce-
plasty patients experienced significant improvement in back pain, compared
dures. This was rather myopic in its view because our study was in a cancer
with no change in the control group. One month after treatment, balloon
population using a different procedure and showed a clear consistent benefit.
kyphoplasty was found to provide better back function and more back pain
Although our study was not blinded, we believe that it would be unethical, in
relief, and improve patient quality of life as measured by the RDQ, compared
the setting of cancer, to perform sham surgeries in the patients randomized
with no statistically significant change in RDQ score in the control group.
to non-surgical management. We were NOT willing to insert a needle into
Dr. Berenson: With the results of this new randomized study, there is now
a cancer patient, and then simply withdraw it without any procedure being
clinical evidence of a treatment option for spinal fractures in cancer patients
performed to see if there would be a placebo effect. And I do not believe that
that can provide rapid relief of pain and improved quality of life without
the endpoint benefits we observed across the board were simply from some
significant side effects that could potentially delay other therapies required to
spectacular placebo effect. Even subjecting patients to radiation therapy to
treat the underlying cancer. Importantly, every endpoint of the study was in
relieve pain would not likely have had such dramatic benefits.
favor of the balloon kyphoplasty-treated patients. This is an important study,
Now that you mention it, what about radiation as a treatment option?
and our results show that there is a way to help cancer patients suffering from
Dr. Berenson: Radiating the back compromises the patient's bone marrow
the debilitating effects of painful vertebral compression fractures. MT
as well as the local bone and other organs in the vicinity, and the damage is
permanent. In the CAFE study, while balloon kyphoplasty patients showed
PROF. MICHELE CAVO -- continued from page 9
almost an immediate benefit, the non-surgical management group showed
no improvement despite the proviso that patients randomized to non-surgical
As the lead author of the recent IMWG paper on the role of ASCT in
management were allowed to undergo radiation therapy.
myeloma, what can you tell us about it?
Dr. Vrionis: Radiation can be helpful for patients with solid tumors. However,
The International Myeloma Working Group (IMWG) manuscript presents an
radiation treats the tumor but cannot heal fractures or aid with correcting
overview of the most recent studies of novel agents combined with ASCT,
spinal deformities.
and provides important perspectives and guidance on the major issues
Is balloon kyphoplasty an option for all patients with spinal fractures?
surrounding the optimal current management of younger, transplant-eligible
myeloma patients. As of the time of this conversation, the manuscript has
Dr. Vrionis: Any myeloma patient with a vertebral compression fracture
been published as Blood's "First Edition Paper" and the final print form will
should be evaluated by a neurosurgeon or orthopedist. Not all myeloma
patients are candidates for balloon kyphoplasty. Patients should discuss the
be available soon.
potential benefits and risks of balloon kyphoplasty with their physicians in
In the era of novel agents, is there still a role for ASCT as upfront
order to determine whether this procedure is right for them. As with any
therapy for myeloma?
surgical procedure, there are risks, so patients should talk about the potential
Two ongoing large clinical trials are addressing this issue. One of these trials
adverse events with their doctors. In my opinion, balloon kyphoplasty should
is being conducted in France and the US. The other trial is headed by the
be standard of care for patients with myeloma who have compression frac-
European Myeloma Network; its primary objective is to prospectively compare
tures and are candidates for this procedure.
upfront ASCT, either single or double, with ASCT delayed at the time of
What are the potential risks of this procedure?
relapse after therapy with novel agents. Another important question of this
Dr. Berenson: Medical adverse events were similar from baseline to one
study is to establish the role of consolidation therapy, so there is an additional
month between the balloon kyphoplasty group and the control group. The
randomization for patients in both the transplant and the non-transplant arms
most common adverse events within one month were back pain and symp-
to receive consolidation therapy or not.
tomatic vertebral fracture.
Returning for a moment to the subject of your first allo patient,
What were the CAFE study findings?
does she remain disease-free after more than 30 years?
Dr. Berenson: Balloon kyphoplasty patients experienced improved quality
Yes, she is actually cured of myeloma. While there are still a lot of caveats
of life compared with the control group as measured by both physical and
concerning allo transplantation in myeloma, a small fraction of patients ben-
mental component summaries at one month and these results were generally
efit from this procedure and are long-term, disease-free survivors. Similarly,
maintained through 12 months. Multiple outcomes relating to back disability,
approximately one fifth of patients treated with ASCT remain in CR more than
back pain, use of pain medications, activity levels, quality of life, physical func-
10 years after high-dose therapy, and their number is likely to increase in the
tion, and back pain were evaluated in 129 patients (68 kyphoplasty and 61
future as a result of recent incorporation of novel agents into transplantation.
non-surgical patients). The primary outcome was the change in back-specific
function from baseline to one month between the groups as measured by the
What is your perspective on future directions in the field?
validated Roland-Morris Disability Questionnaire (RDQ) score, with 0 (best)
Advances being made in the field of myeloma are progressively increasing,
equal to no disability and 24 (worst) equal to maximum disability. At enroll-
and the therapeutic armamentarium for this disease is rapidly expanding due
ment, the average score was 17-18. In the group that received kyphoplasty,
to the availability of effective new novel agents, such as second generation
the score was reduced by half. The group that was randomized to non-surgical
proteasome inhibitors and third generation immunomodulatory derivatives.
management for the first month, showed no improvement in the RDQ score.
The novel therapeutic paradigm continues to significantly modify the clinical
Dr. Vrionis: It is documented that patients with several types of cancer can
outcome of myeloma patients. These are exciting years. We are looking at a
suffer painful vertebral compression fractures: nearly one-fourth (24%) of
real possibility to transform myeloma into a chronic disease and to offer a cure
patients with myeloma, 14% with breast cancer, 8% with lung cancer, and 6%
to an increasing fraction of patients. I think that the future is clearly bright for
with prostate cancer. Most balloon kyphoplasty patients in the CAFE study
myeloma patients. MT
10
myeloma.org
News & Notes
The IMF at IMW (International Myeloma
Long-Term Continuous Treatment
Workshop) Paris
Presented at IMW XIII, new data demonstrate that long-term continuous
The International Myeloma Workshop (IMW), an important scientific
REVLIMID® (lenalidomide) maintenance therapy following stem cell
meeting that is held bi-annually, provides a compelling program highlight-
transplant delays time to disease progression and improves overall sur-
ing emerging advances in the understanding of the biology, genetics,
vival (OS). The figures from the Cancer and Leukemia Group B (CALGB)
diagnosis, and treatment of multiple myeloma. IMW XIII, the 13th meeting
study sponsored by the U.S. National Cancer Institute (NCI) demonstrated
of the IMW, took place in Paris, running from May 3rd through the 6th,
a 90% OS rate in the lenalidomide arm of the trial at more than two
2011. A written overview of the key presentations from IMW XIII will be
years following transplant, compared to 83% survival for patients given a
published in the Fall 2011 issue of Myeloma Today.
placebo. The CALGB study further showed that lenalidomide maintenance
resulted in longer remissions, delaying disease progression by a median
Video Library
of four years. A similar study of lenalidomide following transplant from
The video filmed by the IMF at the IMW in Paris is available on the IMF
the French Francophone Myeloma Intergroup (IFM) also demonstrates
website myeloma.org. The library of available videos features key sum-
benefit with progression-free survival, patients living longer without active
mary interviews with leading researchers and clinicians, as well as several
disease.
sessions filmed in their entirety. In total, the IMF's IMW webcasts include
more than 100 presentations in 15 scientific sessions and panel discus-
Maintenance is being considered as an option with other drugs, includ-
sions. All webcasts are archived at myeloma.org.
ing VELCADE® (bortezomib) when administered in a reduced dose
or as a subcutaneous injection (instead of the traditional intravenous
Patient Blog
administration).
Written by Jack Aiello, an IMF member and a myeloma patient, the blog
offers a patient's perspective on the IMW proceedings. To read Jack's blog,
Next-Generation Drugs Moving Towards
"A Patient in Paris," please visit patientinparis.myeloma.org.
Approval
Patient & Family Seminar
Pomalidomide, the newest drug in the IMiD® family, and carfilzomib, a
next-generation proteasome inhibitor, are both moving closer to approval
Immediately following the close of IMW XIII, patients and caregivers in
for patients who have relapsed or do not respond to current drugs. The
France were able to attend a free seminar to hear an overview of the most
pomalidomide phase II clinical trial data continues to mature, demonstrat-
important information that was presented at IMW. The faculty included
ing the best overall response rate to date, and accelerated filing strategies
myeloma experts Dr. Brian G.M. Durie, Dr. Xavier LeLeu, Prof. Jean-Paul
in the U.S. are under discussion. Carfilzomib is expected to be filed with
Fermand, and Prof. Thierry Facon. The seminar was held in Paris on May 6
the FDA for accelerated approval, also based on phase II data.
at the Maison de l'Amerique Latine.
DID YOU KNOW? Exciting news: The IMF is blogging
Help the IMF learn more about myeloma patients
We have expanded our website to include blogs by patients, caregivers,
Whether you are a myeloma patient or a caregiver who can provide
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In addition, you may also share your thoughts about any article that
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Follow us on
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800-452-CURE(2873)
11
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 Nancy Baxter, Debbie Birns, Paul Hewit ,
and Missy Klepetar. The phone lines are open Monday through Thursday, 9 a.m. to 3 p.m. (Pacific Time),
and Friday, 9 a.m. to 2 p.m. To submit your question online, please email TheIMF@myeloma.org.
I have had myeloma for 3 years
published in Blood (2 April 2009,
and am relapsing after a stem cell
Vol 113, No. 14, pp. 3135-3136), he
transplant using my own cells. I
analyzes three papers that compare
am 45 years old and I have a sister
mini-allo transplant to autologous
who is a bone marrow match for
stem cell transplant. Dr. Stewart
me. My doctor is encouraging me
observes that two of the studies
to consider doing what he calls an
show either worse or no improve-
allogeneic transplant using her cells
ment in outcome, while the third
as a treatment for myeloma, which
trial suggests an advantage to the
could cure my myeloma. What is
mini-allo transplant. He states that
the current thinking on this type of
because the results from these ran-
transplant?
domized trials are conflicting, the
There has been a big debate in the
myeloma community should wait
myeloma community for decades over
(l to r) Paul Hewitt, Missy Klepetar, Nancy Baxter, and Debbie Birns
for the results of a major Bone
the role that allogeneic (using stem
Marrow Transplant Clinical Trial Network (BMT CTN) study that was
cells from donor) transplant should play in treatment for patients. The
underway at that point.
hope has been that, if successful, an allogeneic (allo) transplant might
be able to cure myeloma patients. Although the procedure was known to
The results of that major trial were reported at the 2010 annual meeting of
potentially cause severe side effects and even death, doctors (and patients)
the American Society of Hemtology (ASH) by Dr. Amrita Krishnan, princi-
were willing to take those risks in exchange for a cure. Unfortunately,
pal investigator of the trial and head of the multiple myeloma program at
recent studies have not supported the use of allo transplants outside the
the City of Hope Hospital, Duarte, CA. There were 43 participating centers
setting of a clinical trial.
in this large BMT CTN study. The study compared tandem auto trans-
plants with or without maintenance therapy (auto-auto) verses single auto
In recent years, doctors performing allo transplants have used what is
transplant followed by HLA matched sibling non-myeloablative allogeneic
called a "mini-allo" transplant because it is safer than the full allo trans-
transplant (auto-allo) for patients with standard-risk myeloma. There were
plant. In this approach, the patient first receives an autologous (using his
710 patients enrolled between December 2003 and March 2007. After ana-
own stem cells) transplant to reduce the tumor burden. This is followed
lyzing the data, the authors concluded there were no differences in 3-year
by reduced-intensity (lower-dose) chemotherapy, which does not destroy
PFS (progression-free survival) or OS (overall survival) between the two
the patient's bone marrow but does allow for the donor's blood cells and
groups. The potential benefits of graft-versus-myeloma to reduce disease
immune system to grow in the patient after they are infused. Despite the
progression or relapse were offset by increased TRM (treatment related
improvement in safety of this approach, there are still enough deaths and
mortality). This study confirms the conclusion that mini-allo transplants
severe long-term side effects that doctors have tried to assess if these risks
should not be offered as standard therapy (either front-line or at relapse)
are worth potential benefits of improved survival.
outside the context of a clinical trial.
The side effect that creates the biggest problem is graft vs. host disease
As always, we urge you to discuss this and all other medical issues
(GVHD), a result of the donor's stem cells (the graft) thinking that the
thoroughly with your doctor, and to call the IMF Hotline, 800-452-CURE
patient (the host) is alien and must be attacked. GVHD can be acute
(2873), for help with your questions. We are also happy to receive your
(occurring within the first 100 days after transplant) or chronic (occurring
emails at TheIMF@myeloma.org, and we now have a hotline blog acces-
60 to 100 days after transplant and possibly lasting years). It can affect the
sible via the IMF website myeloma.org. MT
skin (red rash, itching, darkening of skin), the liver (elevated liver tests
determined through blood tests, yellowing of the skin and whites of the
eyes, abdominal pain) and/or the gastrointestinal tract (watery diarrhea,
Do you have a question?
stomach cramps during bowel movements, and persistent nausea). GVHD
Perhaps you would like to order a publication? Are you thinking
is also, however, what can potentially help the patient. The hope is that
about registering for a Patient and Family
the graft (the donor's immune system) sees the host (the patient and his
Seminar or Regional Community Workshop?
myeloma) as foreign, and kills the myeloma. This is the desired "graft vs.
Would you like to download the Myeloma
myeloma" effect.
ManagerTM? All this and MORE is possible on
the IMF website.
In Dr. Keith Stewart's excellent review article ("Reduced-intensity allo-
geneic transplantation for myeloma: reality bites"), which has been
myeloma.org
12
myeloma.org
Nurse Leadership Board
Page Bertolotti, RN, BSN, OCN
LONG-TERM SURVIVORSHIP GUIDELINES
Cedars-Sinai Outpatient Cancer Center at the
FOR MULTIPLE MYELOMA PATIENTS
Samuel Oschin Comprehensive Cancer Institute
Los Angeles, CA
Elizabeth Bilotti, RN, MSN, APRN, BC
The Nurse Leadership Board (NLB) is a part-
treatment are focused on maintaining qual-
The John Theurer Cancer Center at HUMC
nership between the International Myeloma
ity of life and patient health. She shared
Multiple Myeloma Division
Hackensack, NJ
Foundation (IMF) and nurses from the
research updates on continuous/mainte-
Kathleen Colson, RN, BSN, BS
leading centers treating multiple myeloma
nance therapy with Revlimid® (lenalido-
Dana-Farber Cancer Institute
patients in the US. The NLB's mission is to
mide), as well as new data on Velcade®
Elizabeth Bilotti,
Boston, MA
gain insights into optimal patient care and to
(botezomib) maintenance, as well as two
MSN, APRN, BC
Deborah Doss, RN, OCN
address the unmet needs of myeloma nurses
key studies of bortezomib administration
Dana-Farber Cancer Institute
and their patients. The IMF's NLB has been
(once vs. twice weekly and subcutaneous vs.
Boston, MA
very effective in utilizing the clinical and
intravenous), bone health, and promising
Beth Faiman, MSN, APRN-BC, AOCN
Cleveland Clinic Taussig Cancer Institute
research experience of its membership to
agents in clinical development. New agents
Multiple Myeloma Program
develop consensus recommendations for
being evaluated for efficacy in patients
Cleveland, OH
nursing care for myeloma patients.
with relapsed/refractory myeloma include
Charise Gleason, MSN, NP-BC, AOCNP
carfilzomib, pomalidomide, denosumab,
Emory University Winship Cancer Institute
On April 28, at the 36th Annual Congress of
elotuzumab, vorinostat, panobinostat, tem-
Atlanta, GA
the Oncology Nursing Society (ONS), which
sirolimus, and perifosine.
Bonnie Jenkins, RN
took place April 28 May 1 in Boston, MA,
University of Arkansas Medical School
Kathleen Colson,
the IMF held an accredited educational
The NLB Long-Term Survivorship Guidelines
Little Rock, AR
RN, BSN, BS
satellite symposium to present the NLB
encompass multiple elements to ensure
Kathy Lilleby, RN
Long-Term Survivorship Guidelines for Mul-
optimal patient treatment, management,
Fred Hutchinson Cancer Research Center
Seattle, WA
tiple Myeloma Patients. The symposium was
follow-up, quality of life, and survival. The
Patricia A. Mangan, APRN, BC
chaired by NLB's Beth Faiman, and the
application of the survivorship care plan
Abramson Cancer Center at the
faculty included Elizabeth Bilotti, Kathleen
concepts was demonstrated to symposium
University of Pennsylvania
Colson, and Joseph Tariman.
participants through several patient case
Philadelphia, PA
studies: the session that focused on renal
Emily McCullagh, RN, NP-C, OCN
The symposium opened with welcome
health was presented by Joseph Tariman;
Memorial Sloan-Kettering Cancer Center
remarks and an overview of myeloma by
bone health was presented by Kathleen
New York, NY
Beth Faiman. She discussed the role of the
Colson; health maintenance was presented
Beth Faiman, MSN,
Ann McNeill, RN, MSN, APN
tumor microenvironment in disease progres-
The John Theurer Cancer Center at HUMC
by Elizabeth Bilotti.
APRN-BC, AOCN
sion, the disease continuum from asymp-
Multiple Myeloma Division
Hackensack, NJ
tomatic premalignant conditions to active
New therapies have improved survival for
Teresa Miceli, RN, BSN, OCN
disease, clinical manifestations of myeloma,
many patients with myeloma, and there is
Mayo Clinic Rochester
and the expanded treatment options since
a clear trend towards risk-stratification and
Rochester, MN
the introduction of novel agents to the
personalized disease treatment. The NLB
Kena C. Miller, RN, MSN, FNP
management of the disease.
Long-Term Survivorship Guidelines serve
Roswell Park Cancer Institute
as a practical resource to oncology nurses,
Buffalo, NY
Beth presented a detailed update on cur-
addressing the full continuum of cancer
Tiffany Richards, MS, ANP, AOCNP
rent therapies used in the management
survivorship, and enhancing the patient's
MD Anderson Cancer Center
of patients with myeloma. As patients are
Houston, TX
treatment outcome and quality of life.
Joseph Tariman,
living longer, the new paradigms in myeloma
MT
Sandra Rome, RN, MN, AOCN
PhD, APRN, BC
Cedars-Sinai Medical Center
Los Angeles, CA
Kimberly Noonan, RN, ANP, AOCN
Jacy Spong, RN, BSN, OCN
Oncolog y Nurse Practitioner for Hematological Malignancies
Mayo Clinic Arizona
Scottsdale, AZ
Dana-Farber Cancer Institute Boston, MA
Joseph Tariman, PhD, PhC, MN, APRN-BC
Kimberly Noonan received her B.S. in Nursing degree from UMASS Boston (Boston State) and
Northwestern University
earned her Master of Nursing Science degree at Boston College. For the past five years, Kim has
Chicago, IL
been part of the myeloma treatment team at the Dana-Farber Cancer Institute. She works with
ASSOCIATE MEMBERS
individuals who have monoclonal gammopathy of undetermined significance (MGUS), smolder-
B. Nadine Baxter-Hale, MNSc, APN-BC, AOCNP
ing multiple myeloma (SMM), and active disease. She provides care to patients in a variety of
University of Arkansas for Medical Sciences
settings, including before/after transplant, as well as during their participation in clinical trials.
Myeloma Institute of Research and Therapy
Little Rock, AR
"The IMF offers so many valuable programs and services that the patients I work with cannot say enough about what
Elizabeth Finley-Oliver, RN
a great resource the IMF is to them," said Kim. "I am pleased to have the opportunity to be part of the IMF's Nurse
H. Lee Moffitt Cancer Center and Research Institute
Leadership Board. As oncology nurses, we also play an important role in helping patients manage life with cancer. Our
Tampa, FL
ongoing contact with them gives us a unique perspective to identify a broad range of potential concerns, enhance patient
Sandra Kurtin, RN, MS, AOCN, ANP-C
Arizona Cancer Center
education, and provide valuable feedback to the treating physicians regarding issues that patients might be experiencing.
Tucson, AZ
Like the IMF and the NLB, I continually strive to better serve those whose lives have been touched by myeloma. It is
Kimberly Noonan, RN, ANP, AOCN
gratifying to part of a task force that will be creating the NLB Transplant Management Guidelines, and I look forward to
Dana-Farber Cancer Institute
contributing to future NLB projects as well. I've seen such major improvements in the field of myeloma over the last five
Boston, MA
years, that I think today's patients have more hope than ever before."
800-452-CURE(2873)
13
Education & Awareness
SPOTLIGHT ON ADVOCACY
A Day at the Capitol
By Tom Chelius, West Bend Area Myeloma Support Group Member
I am very fortunate to have the insurance coverage that I do. My coverage
complete remission but am dealing with chronic Graft vs. Host Disease
allowed my oncologist and me to make the most appropriate decisions
for which I briefly used an oral therapy but failed to respond.
for a plan of attack against my cancer. I started
For survivors and caregivers, the most important
taking Revlimid® (lenalidomide) the day after I was
thing was to tell our stories. There is nothing
diagnosed with multiple myeloma. Compared with
more powerful than putting a face on a problem.
IV therapies for some patients, I was shocked to
So armed with our own experiences and some
learn how much more the out-of-pocket costs were.
additional knowledge of the issue from the
That was four years ago. When I first heard about
orientation session, we literally walked up the hill
the Oral Chemotherapy Parity Bill in Wisconsin, it
to the Capitol.
seemed like common sense to me.
Our first scheduled visit was with State Assembly
When given the opportunity, I signed up with the
member Evan Wynn. We figured this meeting
Wisconsin Coalition for Cancer Treatment Access's
would be easy since Representative Wynn was
Day at the Capitol. The IMF joined the WCCTA in
already a co-sponsor and spoke at our orienta-
2010 along with other patient advocacy organiza-
tion meeting. When we arrived, Representative
tions to seek legislation that would ensure cancer
Wynn had been called away to another meeting.
patients in Wisconsin have access to life-saving
So the group chatted with his aide and asked
oral cancer treatments. For more information, visit
him to spread the word about this bill and how
www.thewccta.org.
important it is to cancer patients.
A Day at the Capitol involved meeting with legisla-
If our first meeting was simple, the next one
tors to ask them to co-sponsor the bill, which
definitely upped the ante. On our way to meet
increases its chance of being taken up and not "lost
with Representative Jeff Stone, we were informed
in committee." I had never done anything like this
that our meeting was very important because
before, so I was a bit nervous about it. Plus, given
(left to right) Dick Skalitzky, Shauna Skalitzky,
Rep. Stone serves as the chair of the Committee
the recent political climate in Wisconsin, I wasn't Sue Enright, Tom Chelius, and Christina Vargas on Health, the committee which would debate
too sure how we would be received.
the bill prior to it reaching the floor for a vote.
As they say, though, there is strength in numbers. On the morning of April
Getting Mr. Stone's approval would be significant. This heightened our
27th, we gathered at the Madison Concourse Hotel for the orientation
anxiety...we had to get this one right. Like Mr. Wynn, Representative
meeting. The tables that we were assigned determined the teams that
Stone got called to a meeting. So we met with his aide instead. As Mr.
would be meeting with legislators. Here is how our team shook out:
Stone's constituent, I knew I had to speak up. After Christina introduced
· Christina Vargas Our Team Leader from the IMF. Her positive can-do
us, Sue gave a great overview of the issue, then the rest of us chimed in. I
attitude and background gave us the confidence we needed.
had a secret weapon along. I originally brought my iPad to take notes, but
decided at the last minute to show MRI images of the rather large plasma-
· Sue Enright Caregiver and founder of the West Bend support group.
cytoma (removed surgically) that was adhered to my skull that required
Her knowledge and experience are very extensive and I knew she would
Revlimid to avoid radiation. Everyone explained how the potential cure
be an asset. I first met Sue and her husband, Rob, when Rob and I were
for myeloma would likely come from a combination of medications, which
having our stem cells collected. We have become good friends since.
oral drugs are a part of. The aide felt that Mr. Stone would likely support
· Dick Skalitzky Two-year myeloma survivor from Fond du Lac and
this legislation and that she would discuss it with him. SUCCESS (sort of )!
a member of the West Bend Support Group. Dick has been on both
We were told we did a great job and that we might be needed back at some
Velcade (bortezomib) and Revlimid.
later time as the bill progressed. This was just the boost in confidence that
a bunch of "noobs" needed!
· Shauna Skalitzky Dick's daughter who drove up from Chicago
and was along for support. She had a vested interest in any future
Our third meeting was with State Senator Mary Lazich, again for whom I
implications that this legislation might have for her father. She proved
was the constituent. While Senator Lazich admitted that she hadn't closely
invaluable helping us navigate around the capitol, and kept notes on
studied the draft that was circulated, she did say that it sounded like com-
each of the discussions.
mon sense, which made telling our stories easier. I was able to go a little
more into my struggle with chronic Graft vs. Host Disease and how my
· Tom Chelius (me) I am a four-year myeloma survivor, diagnosed
oncologist and I tried an oral treatment. Ms. Lazich told us she needed to
when I was 38. I have been through both an autologous stem cell trans-
do more homework on the issue before she could commit. This seemed
plant and an allogeneic stem cell transplant. I have been on Revlimid for
reasonable and given her response to us, it seemed like she would be a
my initial therapy as well as maintenance for a year. I am currently in a
promising co-sponsor, or at least a vote.
14
myeloma.org
Education & Awareness
David's Story
IMF Welcomes
Christina Vargas
By Meghan Buzby
We are pleased to announce that Christina Vargas
Meet David Cowan. He is a 51-year-old mul-
has joined the IMF Advocacy team. Christina grew
tiple myeloma survivor from Eunice, NM.
up in Peru and witnessed severe poverty, devel-
David has been through it all transplants,
oping a heightened sensitivity to social inequality
bone marrow biopsies, radiation, chemo,
and the need to expand access to education
and numerous other treatments. And, much
and health care. This awareness burgeoned into
like you or your loved ones, he had had
the passion for human rights that formed her
enough. And decided to stop his treatment.
educational and professional trajectory.
When the IMF advocacy team found David,
Christina received her law degree from the UCLA School of Law's Public
it was the beginning of a beautiful friendship. There was a bill being
Interest Law and Policy Program, specializing in Critical Race Studies. She
considered in New Mexico that would require insurance plans to cover
then completed her Master of Education at Harvard University, where she
orally administered chemotherapy at the same rate as intravenous and
was awarded the Center for Public Leadership's prestigious Zuckerman
injected chemotherapy. The bill was scheduled to be heard in the House,
Fellowship. Throughout her work as a community organizer, community
Health & Government Affairs Committee and someone was needed to
advocate, and as the founder of an educational non-profit, Christina's
testify. David, who had never even been inside the Capitol building, was
commitment to social justice has guided her work. She is eager to further
up for the challenge.
IMF's mission. MT
With guidance from the IMF Advocacy team, David first met with the bill's
author, Senator Timothy Z. Jennings. During his visit, he discovered he
How to contact the IMF Advocacy Team
had an immediate connection with the Senator, whose wife bravely fought
Christine Murphy Director, Government Relations
breast cancer for four years.
phone: 703-738-1498
"Sen. Jennings and I sat together in front of eight Representatives and I
fax: 703-349-5879
email: cmurphy@myeloma.org
gave my testimony," David recalled. "It started out fine but as I explained
all that I had been through and what this bill meant to me and others, I
Arin Assero Director of Advocacy
started having a lot of emotions and I found it hard to talk. Senator Jen-
phone: 800-452-CURE (2873) ext. 232
fax: 818-487-7454
nings picked up where I left off and told his story about his wife's battle.
email: aassero@myeloma.org
Our stories complimented each other and the combined effect made for
a powerful statement."
Meghan Buzby Grassroots Liaison
phone: 410-252-3457
The bill passed the committee unanimously that day and has since
email: mbuzby@myeloma.org
been signed into law!
Christina Vargas State Government Affairs
David's experience working with the IMF as a cancer community advocate
phone: 310-592-3201
to enact real change brought him renewed energy and hope. He has since
fax: 909-427-0283
made the choice to resume treatment and continue to fight this battle, for
email: cvargas@myeloma.org
himself, his family, and myeloma patients across the country. MT
continued from previous page
The IMF Advocacy Voice
Get Fired Up! Raise Your Voice!
Our final meeting was with Representative Richard Spanbauer of whom
Dick was a constituent. Mr. Spanbauer was already a co-sponsor, for which
Get Out There and Take Action!
we thanked him. We asked if he had any questions, which led to each of
Do you want to make positive changes in your life and others' lives?
us telling our stories. It was an easier way to end the day.
Join David, Tom, and the rest of our advocates become an IMF
Advocate at advocacy.myeloma.org.
After saying our good-byes, I headed back to Milwaukee. I had never done
anything like this before in my life. When I got home, I could only think
As an IMF advocate you will be kept informed
of how glad I was to have done it...absolutely no regrets. I originally
of critical issues affecting the myeloma
had wondered if I actually would have been of use, since I didn't have
community at both the federal and state
insurance coverage issues, but I now look back at the day and think that
levels. Sign up TODAY!
perhaps I did make a difference, which will hopefully benefit many of
my fellow survivors. Like my struggle with myeloma, it took a team effort
and we worked wonderfully together. Let's hope and pray that Wisconsin
advocacy.myeloma.org
becomes state number 12 to adopt this important legislation. MT
800-452-CURE(2873)
15
International Affiliates
UPDATES FROM AROUND THE GLOBE
Asian Myeloma Network
to Florida to be part of the faculty at
On March 17, the IMF established the Asian Myeloma Network (AMN) at a
the Boca Raton IMF Patient & Family
meeting in Singapore. The inaugural membership of AMN includes myeloma
Seminar. In addition to being educated
experts from China, Hong Kong, Taiwan, Japan, Rep. of Korea, Singapore, and
about the scientific and clinical work
Thailand. The AMN will take the lead in projects to assist the IMF in providing
taking place in other countries, the IMF
physician education and patient support throughout Asia.
believes it is important for patients to
have the opportunity to see, hear, and
Prof. Mario Boccadoro with his
Myeloma is a grow-
meet these leaders as well.
wife, Rosella, at the Boca Raton
ing health problem
IMF Patient & Family Seminar
in Asia, with an
As the IMF sponsors these exchanges,
incidence that is
we also schedule formal and informal roundtables for doctors to discuss ideas
approaching that of
and nurture the relationships that will create more international linkages for
the statistics in West-
clinical trials and published research.
ern countries, but
This summer, at least two doctors' roundtables will be set up in conjunction
with a much larger
with patient meetings while Dr. Kyle is in Norway and Sweden. In Norway, Dr.
population base. The
Kyle will be hosted in Trondheim by Dr. Anders Waage (chair of the Norwegian
initial focus of the
Study Group and past chair of the Nordic Study Group) and in Gothenburg
AMN will be the development of a unified database to assess the incidence
by Drs. Jan Westin and Ulf-Henrik Mellqvist. In Denmark, where Dr. Kyle is
and demographic features (including stage of disease and treatment used)
scheduled to speak at a patient meeting co-hosted by the DMF, the Danish
of myeloma in Asian countries as a key step in designing region-specific
myeloma patient association, he will also participate in the meeting of the
treatment management tools and strategies. The IMF is funding the AMN to
Danish Myeloma Study Group, hosted by chair Dr. Niels Abildgaard.
establish this integrated database.
All of these collaborations build upon and deepen the activities of the IMF's
Future projects will include the implementation of Asian clinical trials, as well
International Myeloma Working Group (IMWG). The major goal of the IMF's
as the development of informational resource materials in local languages,
programs in Europe is to increase patient education activities, and to nurture
especially for patients and caregivers. The extensive library of educational
patient advocates who will supplement and enhance the important work of
materials and publications on the IMF website will be available as a guide.
researchers and clinicians in their respective nations.
A formal yearly meeting of the AMN will be held to review progress and
In the future the IMF will also seek more ways to link the efforts of patients,
plan future projects. The 2012 meeting is scheduled to take place in
doctors, and nurses on both sides of the Atlantic. Please feel free to contact the
Shanghai, China.
IMF if you have ideas on how we can better achieve our goals.
For more information about the AMN, please contact Dan Navid at
dnavid@myeloma.org.
For more information about IMF Europe, please contact Gregor Brozeit at
greg.brozeit@sbcglobal.net.
IMF Europe Focuses on Collaboration
Associazione Schirinzi A. Mario Onlus
Advances in myeloma research and treatment do not happen without col-
laboration. As anyone who has ever attended an IMF Patient & Family Seminar
The Associazione Schirinzi A. Mario Onlus is the only charity organization in
or kept up with the scientific literature in the field knows, advances are
Italy that devotes all its efforts to assisting multiple myeloma patients, caregiv-
literally happening all over the world. Europe is an extremely active region
ers, and family members. The Associazione works towards increasing myeloma
for myeloma research. Significant advances are occurring in France, Italy,
awareness in Italy among the
Germany, Spain, and the Nordic nations, as well as in Eastern Europe.
general public through sport-
ing events and educational
The IMF understands that the term "international" is more than rhetoric; it is
seminars, while raising funds
reality. People and nations know borders. Diseases do not.
for myeloma programs and
Over the many years that the IMF has been active in Europe, it has been with
services. Several initiatives
the understanding that patient education activities needed to reach as many
have been underway in 2011,
patients and family members as possible. It meant helping to add value to
with more in the pipeline.
existing institutions, creating new ones where there were none, and develop-
On April 2, the Associazione
ing linkages between best practices and experiences.
Schirinzi A. Mario Onlus
Associazione's Vittorio Schirinzi with
In 2011, this philosophy is being realized in a number of ways. The IMF
kicked off its sixth memo-
Gregor Brozeit (IMF Europe), Giancarlo
has already co-sponsored patient meetings in Spain (Barcelona) and France
rial golf tournament in Pisa, Antognoni (winner of the 1982 FIFA World
(Paris). More patient meetings are scheduled in the Czech Republic (Prague),
Tuscany, home of one the Cup with the Italian national soccer team ),
Germany (Koblenz, Berlin, Leipzig, and Hamburg), Norway (Oslo), Sweden
most important hematology
and Niccolò Cateni (communication
manager for Conte of Florence
(Gothenburg), and Denmark (city to be announced). Dr. Robert Kyle, who
centers in the region. The
sportswear brand)
chairs the IMF Scientific Advisory Board, will speak at five of these events.
tournament's next stops
were in Florence on May 1 and Pistoia on June 2. The grand finale took place
In addition to bringing American-based myeloma experts to speak at patient
on June 11 in Prato, home of the Associazione's offices. The concluding round
meetings in Europe (Drs. Kyle, Barlogie, Durie, Vesole, and Gertz), the IMF
of the tournament was followed by a benefit dinner on June 11, with sport
is now bringing key European-based leaders in the field to speak at patient
and political luminaries in attendance.
meetings in the US. In February, Prof. Mario Boccadoro (Turin, Italy) traveled
CONTINUES ON PAGE 18
16
myeloma.org
Support Groups
PEOPLE HELPING PEOPLE
You are never alone in your bat le against myeloma
The IMF takes this opportunity to highlight four myeloma support groups
"As a myeloma patient, I know how important it is for us to educate and
in Virginia. On April 11, an IMF Regional Community Workshop (RCW)
empower ourselves," said Barbara. "Members of our group support and
will take place in Norfolk, VA. Held in smaller cities to expand the reach of
encourage one another, share experiences, laugh and cry together. We are
IMF programs to a wider audience, RCWs are half-day meetings designed
great listeners, and we are truly there for each other. We are a very friendly
to provide much of the same information presented at an IMF Patient &
and resourceful group, and we have now grown to nearly 30 members.
Family Seminar, but in a condensed form. RCW faculty consists of local
I am very fortunate to be part of this community."
myeloma specialists, a nurse, and a speaker on supportive care issues.
Barbara, along with group co-leaders Mindy Fast and Ronne Jacobs, as
The IMF works closely with the local support groups to promote these
well as input from other members, has devised a meeting agenda for 2011
meetings, and many group members will be in attendance. To view the full
that balances presentations by invited speakers with "sharing" meetings. If
schedule of upcoming RCW meetings, as well as information about how to
you live in or plan to visit the Richmond area, please consider taking part
register online, please visit the IMF's website myeloma.org.
in the group's next gathering.
Fairfax, VA
The Greater Richmond Multiple Myeloma Support Group meets on the
Sabine Gnesdiloff, LCSW, OSW-C, has been a
third Monday of each month. For more information, please contact Barbara
social worker and Program Manager with Life with
Marx at 804.355.6217 or gobabsgo@aol.com; Mindy Fast at 804.262.1821
Cancer (part of Inova Health System) since 1989.
or mcfast123@comcast.net; or Ronne Jacobs at 804.310.7722 or
One of the first long-term patients she met "was
ronnej@verizon.net.
a woman who had a disease I'd never heard of
multiple myeloma. She was a medical librarian,
Roanoke, VA
and she wanted to meet with and learn from others
The Multiple Myeloma Network of the Blue
who had the same disease. She became the driving
Ridge is led by Sharon Madagan and Bill
force behind forming a local myeloma support group." For Sabine, whose
Stokes, who co-founded the support group
first career was also as a librarian, this was the beginning of a 20-year
with Deborah Eller (deceased) in January
friendship and an ongoing role and interest in myeloma education. In the
2003 after meeting through mutual friends.
mid-1990s, Sabine became the facilitator of the recently formed myeloma
Bill was diagnosed in 2000 at age 47. Sharon
support group that continues to serve the northern Virginia and Washing-
was diagnosed in 2001 at age 46, and under-
ton DC metro area.
went an autologous stem cell transplant
(ASCT) in 2002 at the same facility where
The Faifax group is focused primarily on education, with half its meetings
Bill had his two transplants.
featuring guest speakers and the other half following the open discussion
format. The group has almost 125 members on its mailing list, with 25
"Being a dentist, I turned to my medical
or more patients and caregivers attending each meeting. The Life with
library for information when I learned my
Cancer Family Center, where the myeloma support group meetings take
diagnosis," said Bill. "The statistics were
place, offers a broad range of support, wellness, and education services
bleak, with survival rates hovering at a
that address the needs of individuals experiencing cancer in their life. In
frightening one to three years. I decided to
addition to Licensed Clinical Social Workers (oncology counselors), the
give up dentistry, a career I loved, to concen-
Center's staff includes Oncology Certified Nurse Educators.
trate on getting well." Bill became active in patient advocacy, traveling to
Washington to lobby Congress for increased research funding. A veteran
This group meets on the third Tuesday of each month. For more
of several treatment protocols, including two clinical trials, Bill knew
information, please contact Sabine Gnesdiloff at 703.698.2535 or
firsthand that only other patients and their caregivers truly understand
sabine.gnesdiloff@inova.org, or visit the Life with Cancer Family Center's
the rigors and challenges of battling myeloma. "That's why I wanted to
website at lifewithcancer.org.
be part of starting a myeloma support group in our community. Having a
Richmond, VA
local group is immensely helpful. The Internet can certainly be a source
of information, but sometimes that information can be overwhelming and
When Barbara Marx was diagnosed with multiple myeloma in 2006, there
not applicable to one's situation."
was no support group in existence near her home. The closest myeloma
group was in Virginia Beach, and Barbara traveled to attend their meet-
Over the past eight years, the group's membership has ranged from
ings. Later, while at an IMF Patient & Family Seminar, Barbara met three
10 to 25 people, with Sharon and Bill almost never missing a meeting.
other women living in her area who were also interested in starting a local
"We also keep in touch with our members via the phone and emails,"
myeloma group: Mindy Fast, Ronne Jacobs, and Regina Leftwich. In Janu-
said Sharon. "We work diligently to make sure the support group is a
ary 2010, after months of planning and scheduling by the four ladies, the
resource for people with myeloma, as well as for their caregivers. We take
Greater Richmond Multiple Myeloma Support Group held its first meeting
extra care to attend to the needs of the entire group, and we all benefit
with 10 patients and caregivers in attendance.
from learning the latest important information, and sharing experiences
CONTINUES ON PAGE 18
800-452-CURE(2873)
17
Support Groups
PEOPLE HELPING PEOPLE continued from page 17
and camaraderie. Everyone whose life has been touched by this disease
voice conferencing system has made it possible for us to learn directly
needs to know that much medical progress is being made in the field.
from some of the best doctors and nurses in myeloma, as well as from an
As a former teacher, I know knowledge is power, so we are dedicated to
IMF Hotline Coordinator. We also benefit enormously from our mutually
empowering patients and caregivers with not only information, but also
supportive network many new friendships and connections have formed
with our friendship and emotional support."
between individuals in our group. Personally, I have gained a whole new
set of friends who live and understand the experience of myeloma."
Sharon and Bill have maintained positive outlooks throughout their years
with myeloma, and share the optimism with their fellow group members.
As part of the IMF's Advocacy outreach, Jerry has taken a trip to Washing-
"I'm buoyed by the fact that new treatments have enabled me to outlive
ton, DC, to talk to his legislators about the issues facing members of his
those dire survival statistics of ten years ago," said Bill. "I know that a
support group and others in the myeloma community. "The IMF Advocacy
brighter future is possible," added Sharon
program helps guide us to meaningful involvement in myeloma-related
advocacy issues. While we focus on helping ourselves and members
The Multiple Myeloma Network of the Blue Ridge meets the third Saturday
of our group, we can't forget that we are part of a larger myeloma
of each month. For more information, please contact Sharon Madagan at
community." Jerry also initiated the idea of an all-service vet effort and
540.206.9000 or kittycentral@cox.net, or Bill Stokes at 540.343.1920 or
was key in developing the IMF's Veterans Against Myeloma website
bstokes47@aol.com.
www.vam.myeloma.org.
Virginia Beach, VA
The Southeastern Virginia Multiple Myeloma Support Group meets on
Diagnosed with smoldering multiple myeloma in August 2006, Jerry Wal-
the third Saturday of every month. For more information, please visit
ton attended an IMF Patient & Family Seminar in early 2007. At one of
the group's website www.seva.myeloma.org or contact Jerry Walton at
the seminar dinners, he found himself sitting with two world-renowned
757.495.8432 or jerryewalton@cox.net.
myeloma experts, Drs. Robert Kyle and Bart Barlogie. The seminar faculty
also included Dr. Brian Durie and a specialist from a local myeloma center.
NEW support groups invite YOU to join them
In addition, Jerry had a chance to network with members of the North
Texas MM Support Group.
California
Jerry found the experience
Chico (Butte County), CA This group meets on the second Tuesday
of the seminar and the cama-
of each month at 1:30 p.m. at the Enloe Cancer Center Library. For
raderie of the support group
more information, please contact Paul Dragavon at 530.893.2559 or
members to be so valuable
pauldragavon@gmail.com.
that he was motivated to
start the Southeastern Vir-
Redding (Shasta County), CA This group meets on the first
ginia Multiple Myeloma Sup-
Saturday of each month at 10:00 a.m. at Yak's Coffee Shop. For
port Group a few months
more information, please contact Kati Rosten at 530.365.0651 or
later with the help of the
shastamyelomasupport@gmail.com
IMF. The IMF's Robin Tuohy
and family made a special
Michigan
stop in Virginia Beach on
Grand Rapids, MI This group's first meeting is taking place on June
their cross-country Myeloma
20 at Gilda's Club, where the group will continue to meet on the third
Mobile tour to help
Monday of each month. Supper is at 5:30 p.m., with meeting starting at
kick off the group's very
6:00. For more information, please contact Sue and Harold Van Duyn at
first meeting.
616.669.0781 or hsvanduyn2@aol.com. MT
Jerry Walton in Washington, DC
Jerry has a long history of
service. He is a 33-year Navy veteran who retired from active duty in 1998.
He then taught math in the Virginia public school system until June 2007.
UPDATES AROUND THE GLOBE-- continued from page 16
Once the school year ended, founding a myeloma-specific support group
was a logical step for Jerry. Fifteen patients and caregivers attended the
Coming up in September 2011, the Associazione Schirinzi A. Mario Onlus is
first group meeting in August 2007. Since then, group membership has
organizing a Regional Community Workshop (RCW), which will take place in
Lucca, in the heart of Tuscany. The RCW, which is a joint effort between the
increased and meeting attendance has on occasion grown to as many as
IMF and the Associazione, will be held in the center of town on the site of
35 participants when an invited speaker is addressing a popular topic.
the San Micheletto Foundation. Participants are expected from all over Italy.
"Our group is very focused on education, in line with IMF's Knowledge
Discussion topics will span from the basics of multiple myeloma to the newest
is Power theme," said Jerry. "We learn both from expert sources and we
available treatments.
learn a lot from each other as well. The IMF supplied us with technology
For more information about Associazione Schirinzi A. Mario Onlus and
for our meetings that allows us to have guest speakers no matter how
its activities, please visit http://mielomahelp.blogspot.com or email
far removed they are from us geographically. At our group meetings, the
mielomahelp@gmail.com. MT
18
myeloma.org
Patient & Caregiver Experience
I CONCENTRATE ON LIVING!
By Danny Scott
My myeloma diagnosis was inadvertent. About five
During this entire time, back pain continued to
years ago, I complained to my primary care physi-
be a problem for me. I got progressively more
cian about back pain, which led him to order x-rays
bent over to alleviate the pain, and my height
and diagnose me with arthritis. I was 62 years old
decreased from 5'7" to 5'2". Eventually, I needed
at the time, so it sounded logical that I might have
a walker to get around. So I consulted with
arthritis. A couple of months later, when the pain
an orthopedic surgeon about having the Bal-
had gotten even worse, I got additional MRI imag-
loon Kyphoplasty procedure while I waited for
ing. The MRI showed a lesion on my S2 vertebra.
the transplant.
Nuclear testing followed, which confirmed that I
The kyphoplasty took place before my transplant,
had cancer. The news was devastating.
and everything went very smoothly. My hope was
It so happens that my wife works at the H. Lee
that the procedure would decrease my pain and
Moffitt Cancer Center & Research Institute, so I
improve the structural integrity of my spine. After
made an appointment there to see the geriatric
the procedure, the pain was mostly gone and my
diagnostician. It was important for us to separate
height was restored to 5'4-1/2". Not all the back
symptoms of age from symptoms of cancer. The
pain was due to myeloma part of it was due to
doctor ordered a number of additional tests but,
spinal stenosis, which was also causing pain in
as soon as the blood test results came back, we
my legs. This is different from the pain caused
cancelled some of the remaining tests because the
by myeloma.
diagnosis was crystal clear. I had multiple myeloma.
In July 2007, four months after my transplant,
The bone marrow biopsy confirmed the diagnosis.
I underwent another surgical procedure on my
With a prognosis that could be as short as one to two years, I knew that
spine. The vertebrae were pulled off the nerve canal and I received two
I had a battle on my hands and made a commitment to fight as hard
implants, between L5 and L4, as well as L4 and L3, giving me an additional
as I could.
2" in height. Since then, I have had no pain.
In those early days post-diagnosis, the mother of a family member who
My test numbers continued to improve after the transplant. On my birth-
had cancer advised me to stay away from the Internet until I had a clearer
day in December 2009, the doctor informed me that I was in remission.
picture of my situation. She was concerned about me being exposed to
What a great birthday gift! It took a long time to get there, but I remain
lots of scary and negative information. So, for the first week after diagno-
in remission at this time. The only medical therapy I currently receive is
sis, I stayed off the web.
bisphosphonate infusions for my bones, with the frequency of the infu-
At Moffitt, I was referred to Dr. Melissa Alsina, who leads the myeloma
sions having been reduced from monthly to once every three months. I
section. Because I am a big advocate of getting a second opinion (whether
also take vitamins prescribed by Dr. Alsina to help alleviate the symptoms
you need it or not), I took all the information I had and traveled to New
of peripheral neuropathy.
York City to see another myeloma specialist. I had a second biopsy because
There is no question that I've been really lucky, but I've also made a lot
I considered entering a clinical trial, but when it became clear that there
of positive changes in my life since the myeloma diagnosis. I take better
was no rush to jump into anything I decided not to enroll. I made the
care of myself. I've started an exercise regimen. I've lost weight. I miss
decision not to start therapy until my disease required treatment. That
being able to dance I used to be a very good dancer because of the
might sound simple and logical now, but it was a pivotal decision.
neuropathy in my legs, but I have completed a 5K walk-a-thon! I started at
Let me back up for a moment. Early on I did receive radiation therapy to
the back of the pack with my walker in hand, figuring I'd be the last one to
the bone lesion to stop the tumor growth. The radiation was very precise,
finish, but I finished ahead of more than 30 other participants.
targeted solely at the tumor, so that my bone marrow would not be
I find a lot of encouragement at various myeloma education meetings and
compromised in case I chose to pursue an autologous stem cell transplant
seminars. It is important for me to keep up with the latest information as
(ASCT). But there had been no chemotherapy of any kind.
it becomes available. Sometimes I get a little frightened when I hear the
To prepare for the time when the disease progressed to the point of
stories of people who have not been as fortunate as I, but that is why I
requiring treatment, I had to make a choice. Where did I want my
choose to share my experience with others so that they know that there is
myeloma treated when the time came to take action? I chose to remain
hope. Personally, I've found a lot of hope in meeting myeloma survivors
at Moffitt for several reasons, including the center's track record and its
who've had this disease for 16, 17, 18 years. I am educated about myeloma
geographic convenience.
and I am aware of all the odds, but I choose to concentrate on living
and making the most of my life. There is still a lot to look forward to
In October 2006, my test numbers had changed to the degree that it was
for me.
time to initiate treatment. I started chemotherapy in preparation for an
MT
ASCT, which took place in March 2007.
800-452-CURE(2873)
19
Member Events
IMFers RAISE FUNDS TO BENEFIT MYELOMA COMMUNITY
By Suzanne Battaglia
IMF members are
you are also raising public awareness and
too small and we provide
people like you, from
helping those whose lives have been touched by
you with the tools, assistance,
across the country
this disease. Maybe you want to do something
and expertise to make your
and
around
the
in your community, but deciding on what to do
event a success. We are
globe, and many are
and how to do it can be confusing. That's where
grateful to all who contribute
raising money for
we come in! The IMF is here to help you every
their time, imagination, and hard work to
myeloma research and
step of the way. We make it as easy as possible
benefit the myeloma community. Join us in
educational programs
for you to be involved, whether or not you have
working together toward our common goal...
that have an impact
any previous experience.
a CURE. Please contact me, Suzanne Battaglia,
on the lives of patients and family members
Our FUNdraising program is fun and easy,
at sbattaglia@myeloma.org or 800-452-CURE
worldwide.
and brings with it the satisfaction of knowing
(2873) to chat about any ideas you might have.
Being involved is very fulfilling and empowering.
that YOU have made a difference in many
Be part of making miracles happen!
Join us in our search for a cure for myeloma.
lives. Choose an established event model or
Here is just a sampling of some past events and
By organizing an event in your community,
create your own no idea is too large or
a calendar of upcoming ones. .
Central Florida Support Group's
everyone having a fantastic time and
Spaghetti Supper
getting an education about myeloma in
The Central Florida Multiple Myeloma Support Group has a long history
the process."
of community activities, including raising myeloma awareness and funds
To promote the Spaghetti Supper, Ken
for patient programs and services. "Until I was diagnosed, I knew nothing
placed notices in the local newspa-
about myeloma," said group leader Ken Fabian. "So I want everyone out
per, distributed flyers, and did a radio
there to know about the disease, and that our group and the IMF are here
broadcast together with his oncolo- Myeloma survivor Robin Kearney
for people who need support and information."
gist. Many support group members
with IMF's Andy Lebkuecher
got involved to help make the evening a success. Ambassadors from a
neighboring myeloma group attended the dinner to show their support,
as did IMF's regional director Andy Lebkuecher. The Central Florida Mul-
tiple Myeloma Support Group's successful Spaghetti Supper was attended
by about 120 diners and raised $2,500 to benefit the IMF.
Concannon Family Fundraiser
The Spaghetti Supper Planning Team:
When Karen Concannon's daughters, Erin
Steve & Mary Wolf, Uma Khamare, Kelly Bodiford, Arlene McCutcheon,
(14) and Claire (11), decided to raise funds
Ken Fabian, Monica Chill, Pat & Dick Wells, and Bill Mellon.
for myeloma research, no one anticipated
(Not pictured: Victor Alas, Ishwar Khamare, and Roy & Janet Leader.)
that their idea would quickly grow into an
To attract the general public to a community awareness and fundraising
event attended by almost 175 people. The
event, Ken decided to host a $10 Spaghetti dinner at a local community
Concannons had been though a lot since
center. "Everyone likes spaghetti! We
Karen's diagnosis in October 2010 and, as
kept the price reasonable and fed
she was preparing for her May 2011 stem cell
kids free of charge. Felipe Guillen,
transplant, Erin and Claire wanted to find a
general manager at the Olive Gar-
way to raise funds for a cure while bringing
den in Winter Park, was enormously
together friends and family for a fun night
generous he helped us set up, did
The Concannon Family
of celebration.
the cooking (with the assistance of
Felipe Guillen and Roy Leader
several of our support
Four of Karen's friends Tracy Wargo, Jen-
UPCOMING MEMBER EVENTS
group members), and
ine Toback, Mary McCarthy, and Suzanne
July 13, 2011
provided much of the
White offered their assistance with
Music Against Myeloma New York, NY
food free of charge.
organizing the evening. Another friend,
Contact: Slava Rubin slavarubin@gmail.com
September 25, 2011
Our Spaghetti Supper
Laurie Schaeffer, who works at Connecti-
Pytlik Memorial Walk North Tonawanda, NY
event also featured a
cut College, arranged for the school to
Contact: Barb Pytlik, bpcb3@hotmail.com
belly dancer, a singer,
donate the use of their event facilities. DJ
October 2324, 2011
a number of raffles,
Jammin Johnny (John Wilson) donated
Coach Rob's Benefit Bash & Golf Tournament
Apopka, FL
and a silent auction. It
Jenine Toback and
his services to the fundraiser. Illiano's Res-
Contact: Rob Bradford, rbradford@crothall.com
was a fun night, with
Tracy Wargo
taurant donated pizzas and pasta dishes
20
myeloma.org
Member Events
MYELOMA 200 CLOSER TO A CURE
Teamwork makes everything possible. Start your myeloma 200 Fundrais-
at Peninsula Papagayo, including airfare on American Airlines and a $400
ing team and help the IMF reach a goal of $200,000 for our Research,
gift certificate toward spa treatments. To participate all you have to do is
Education, Support, and Advocacy Programs.
register online at m200.myeloma.org or contact Suzanne Battaglia.
Progress in myeloma research and new approaches to treatment are
The MYELOMA 200 CLOSER TO A CURE challenge
improving patient outcomes, but there is much more to be done. The
will continue until April 30, 2012. Anyone can
International Myeloma Foundation is celebrating our 20th year providing
participate, and by helping us reach our
myeloma patients, caregivers, physicians, nurses and researchers with the
goal of $200,000 you help ensure
tools they need to fight against this disease.
that everyone wins! MT
In honor of this tremendous achievement, we have re-launched one of our
most successful fundraisers MYELOMA 200 CLOSER TO A CURE.
Participating in the MYELOMA 200 Challenge is easy: for every $200
you give or raise, you will be entered in a drawing to win a
fabulous vacation getaway for two, for 7 days
and 6 nights, at the beautiful Four
Seasons Costa Rica
m200.myeloma.org
M200
MEMBER EVENTS-- continued from page 20
that could have fed 500, and
to make donations to the IMF, and friends and
many of the guests contrib-
family who were not able to attend the event in
uted more food and drinks!
person made contributions online through a web
"So many people wanted to
page set up by Ivy on the IMF site myeloma.org.
make donations or simply do
In total, almost $1,200 was raised in honor of Ivy
something to help, and I was
and in memory of her
very moved by how much
father, who passed
Mary McCarthy, Suzanne White,
they cared," said Karen. "To
away in April 2007.
and Laurie Scheaffer
Joe Prosper with
raise money, we sold IMF
4-yr-old Ivy
To help raise myeloma
merchandise T-shirts, baseball caps, and pins and all the items were
awareness, Ivy gave a brief talk about the dis-
very popular. And we wanted the event to be a family night, making all
ease and her family's experience with it, and
the children feel included and welcome; the kids loved the IMF burgundy
also distributed IMF burgundy wristbands. "I
awareness bracelets they received as party favors. "
had never heard of myeloma before my father
Held on March 12, the Concannon Family event also featured a raffle, with
was diagnosed, so I can only imagine how
$1 tickets and 16 donated gift baskets, each assembled to reflect a specific
little the general public knows about it," said
Ivy with her father
theme. "The event raised almost $2,400 for myeloma research, and
Ivy.
"This
in 2007
everyone had a lot of fun in the process. My daughters wanted to do a
was my first experience organizing a
good deed and contribute to finding a cure not only for me but for all the
fundraiser and trying to raise myeloma
families coping with myeloma. My husband Paul and I are very proud of
awareness, so I didn't know what to
them and very thankful to everyone who participated."
expect, but the feedback was so positive
Birthday Brunch For A Cure
that I would definitely consider doing it
again. My father has been in my thoughts
On March 12, Ivy Prosper celebrated her birthday while honoring the mem-
a lot, and it felt great to be able to honor
ory of her father, Joe Prosper, and raising funds for myeloma research. The
Ivy with her brother Joe at the him at my birthday brunch." MT
40 guests attending the Sunday brunch in downtown Toronto were asked
Birthday Brunch For A Cure
800-452-CURE(2873)
21
International Myeloma Foundation
NON-PROFIT
12650 Riverside Drive, Suite 206
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
U.S.A.
PAID
www.myeloma.org
N. Hollywood, CA
(800) 452-CURE (2873)
PERMIT NO. 665
Change Service Requested
Foundation
Myeloma
International
©2011,
U.S.A.in
Printed
Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
2011 IMF Calendar of Events
July 15-16
IMF Patient & Family Seminar Dal as, TX
October 12-15 Southwest Oncology Group (SWOG) Chicago, IL
July 23
IMF Regional Community Workshop Minneapolis, MN
October 16
MM Patient & Family Seminar Heidelberg, GERMANY
July 29-31
IMF Support Group Leaders' Summit Irving, TX
October 23
MM Regional Community Workshop Berlin, GERMANY
August 13
IMF Regional Community Workshop San Diego, CA
October 30
IMF Regional Community Workshop Raleigh Durham, NC
August 26-27 IMF Patient & Family Seminar Philadelphia, PA
November 5
IMF 5th Annual Comedy Celebration Los Angeles, CA
September 10 IMF Regional Community Workshop Norfolk, VA
November 12 IMF Regional Community Workshop Phoenix, AZ
September 17 MM Regional Community Workshop Lucca (Tuscany), ITALY
November 19 IMF Regional Community Workshop Leipzig, GERMANY
September 17 IMF Regional Community Workshop Honolulu, HI
December 9-12 American Society of Hematology (ASH) Orlando, FL
September 30 IMF Patient & Family Seminar Rome, ITALY
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.