Myeloma
Today FALL/WINTER
2009/2010
Volume 8 Number 1
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Scientific & Clinical News
Supportive Care
Dr. Brian G.M. Durie, co-founder and chairman of the
IMF Hotline Coordinators answer a
IMF, discusses some of the myeloma-related news coming
question about myeloma patients being
out of the 51st annual meeting of the American Society
diagnosed with hypothyroidism, which
of Hematology (ASH) that may offer new approaches to
occurs when the thyroid gland produces
treating multiple myeloma. Presentations covered both elderly
insufficient levels of thyroid hormone.
and younger patients and, for the first time, ASH studies
Classic signs and symptoms of hypothyroidism are explained, as wel as a
investigated treating the disease in every possible setting, from smoldering
possible link between thyroid dysfunction and the use of thalidomide and
(pre-symptomatic) myeloma to long-term continuous therapy with and
Revlimid® (lenalidomide) in myeloma. PAGE 16
without stem cel transplants, and onto promising new regimens for patients
who no longer respond to existing drugs. PAGE 5
Profiles in the News
The 2010 IMF Research Grant
RL Schrag, a communication professor for 36 years, is also a
award recipients are announced
painter, sculptor, husband, and the father of two adult chil-
and their investigative projects sum-
dren. But it is not from his perspective as a mature col ege
marized. Research being funded by
professor, but rather as a young artist, that he revisits the
the IMF in 2010 includes a prom-
experience of his autologous stem cel transplant. Currently in
ising project by senior investiga-
remission, he shares finding beauty in being a myeloma patient
tor Aaron Schimmer, MD, PhD,
through becoming an insightful observer as he moved through the various
FRCPC (Canada), as wel as work
stages of the transplant journey. PAGE 21
by junior researchers Xin Li, PhD
Also in this issue...
(USA), Eline Menu, PhD (Belgium),
Steffan Nawrocki, PhD (USA),
Dear Reader by IMF president Susie Novis PAGE 3
Ariosto Silva, PhD (USA), and Vyacheslav Yurchenko, PhD
Letters to the IMF PAGE 4
(USA). In addition, the 2010 Aki Award, instituted in memory
of IMF Japan founder Aki Horinouchi, is funding the work of
ASH 2009: IMF Advocacy Booth PAGE 5
Junya Kuroda, MD, PhD. PAGE 7
ASH 2009: A Patient's Perspective PAGE 6
News & Notes PAGE 11
Spotlight on Advocacy
Dr. Brian G.M. Durie
­ IMF Launches Major New Initiative PAGE 12
answers questions about the role of FreeliteTM and
HevyliteTM serum assays in myeloma. Freelite assays, which measure
Nurse Leadership Board PAGE 17
free lambda and free kappa immunoglobulin light chains, are used for the
Support Group ­ People Helping People PAGE 18
detection of oligosecretory (sometimes cal ed "non-secretory") myeloma
International PAGE 19
and for assessment of patients with MGUS (monoclonal gammopathy of
Member Events raise funds to benefit the myeloma community PAGE 20
undetermined significance), as wel as for monitoring disease progression and
for evaluating treatment response in these patients. The utility of Freelite is
2010 IMF Calendar of Events BACK COVER
now being explored in myeloma patients who have a regular M component.
Hevylite, a new assay currently being assessed for its usefulness in manag-
Myeloma Today Gala Supplement
ing myeloma, al ows a direct look at the heavy chains of the serum M spike.
On November 7th, 2009, almost 1,200 guests packed the Wilshire Ebel
Clinical y, the new test is potential y very important because it can actual y
Theatre in Los Angeles for the IMF's 3rd Annual Comedy Celebration
measure M proteins when they are of low concentration or when they are
benefiting the Peter Boyle Memorial Fund.
hidden by other protein bands. PAGE 9
Co-chairs Loraine Boyle and Amy & Steve Weiss rounded up an exceptional
cast of celebrity comedians to come out in support of the IMF award-
Looking for a LocaL myeLoma support group?
winning research program and patient services. The event was hosted by
Ray Romano with Jimmy Kimmel, and featured appearances from Jason
If you are interested in joining a support group, please visit our website
at www.myeloma.org or call the IMF at 800-452-CURE (2873).
Alexander, Brad Garrett, Doris Roberts, Bob Saget, Fred Wil ard, and a
special musical performance by Tenacious D with Jack Black and Kyle Gass.
This issue of Myeloma Today is supported by Binding Site, Celgene Corporation, Millennium: The Takeda Oncology Company.

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Inter
P
nationallaceholder
Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Michael S. Katz
Dr. Edith Mitchell
Susie Novis
Igor Sill
Loraine Boyle
Benson Klein
Dr. Gregory R. Mundy
Matthew Robinson
Allan Weinstein
Mark Di Cicilia
Dr. Robert A. Kyle
Charles Newman
E. Michael D. Scott
Amy Weiss
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Y.C. Chen, Republic of China
Tadamitsu Kishimoto, Japan
James S. Malpas, England
Ian Franklin, Scotland
Ian MacLennan, England
Scientific Advisors
Raymond Alexanian, USA
Gösta Gahrton, Sweden
Martin M. Oken, USA
Kenneth C. Anderson, USA
Morie A. Gertz, USA
Antonio Palumbo, Italy
Michel Attal, France
John Gibson, Australia
Linda Pilarski, Canada
Hervé Avet-Loiseau, France
Hartmut Goldschmidt, Germany
Raymond Powles, England
Dalsu Baris, USA
Roman Hajek, Czech Republic
S. Vincent Rajkumar, USA
Bart Barlogie, USA
Jean-Luc Harousseau, France
Donna Reece, Canada
Régis Bataille, France
Joy Ho, Australia
Paul Richardson, USA
Meral Beksac, Turkey
Vania Hungria, Brazil
Angelina Rodríguez-Morales, Venezuela
William Bensinger, USA
Mohamad Hussein, USA
David Roodman, USA
James R. Berenson, USA
Sundar Jagannath, USA
Jesús San Miguel, Spain
Leif Bergsagel, USA
Douglas Joshua, Australia
Orhan Sezer, Germany
Joan Bladé, Spain
Michio M. Kawano, Japan
Kazayuki Shimizu, Japan
Mario Boccadoro, Italy
Henk M. Lokhorst, The Netherlands
Chaim Shustik, Canada
J. Anthony Child, England
Sagar Lonial, USA
David Siegel, USA
Raymond L. Comenzo, USA
Heinz Ludwig, Austria
Seema Singhal, USA
John Crowley, USA
Jayesh Mehta, USA
Alan Solomon, USA
Franco Dammacco, Italy
Håkan Mellstedt, Sweden
Pieter Sonneveld, The Netherlands
Faith Davies, England
Giampaolo Merlini, Italy
Andrew Spencer, Australia
Meletios A. Dimopoulos, Greece
Gareth Morgan, England
A. Keith Stewart, USA
Johannes Drach, Austria
Gregory R. Mundy, USA
Guido J. Tricot, USA
Brian G.M. Durie, USA
Nikhil Munshi, USA
Benjamin Van Camp, Belgium
Hermann Einsele, Germany
Amara Nouel, Venezuela
Brian Van Ness, USA
Dorotea Fantl, Argentina
David Vesole, USA
Rafael Fonseca, USA
Jan Westin, Sweden
Headquarters
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607-3421 USA
Tel: 818-487-7455 or 800-452-CURE (2873)
Fax: 818-487-7454 Email: TheIMF@myeloma.org Website: www.myeloma.org
IMF Staff
Executive Director
Senior Vice President, Strategic Planning
Vice President, Development
David Girard (dgirard@myeloma.org)
Diane Moran (dmoran@myeloma.org)
Heather Cooper Ortner (hortner@myeloma.org)
Administrative Assistant
Director, Support Groups Outreach
Development Associate
Betty Arevalo (marevalo@myeloma.org)
Kelly Cox (kcox@myeloma.org)
Randi Liberman (rliberman@myeloma.org)
Director, Communications & Public Policy
Hotline Coordinator
Development Intern
Arin Assero (aassero@myeloma.org)
Paul Hewitt (phewitt@myeloma.org)
Kerri Lowe (klowe@myeloma.org)
Accountant
Meeting & Event Services
Publication Design
Sylvia Baca (sbaca@myeloma.org)
Spencer Howard (showard@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Director of Member Events
Director, Medical Meetings & CME Programs
Suzanne Battaglia (sbattaglia@myeloma.org)
Publications Editor
Lisa Paik (lpaik@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
IT Consultant
Data Specialist
Zsolt Bayor (zbayor@myeloma.org)
Hotline Associate
Selma Plascencia (splascencia@myeloma.org)
Hotline Coordinator
Missy Klepetar (mklepetar@myeloma.org)
Webmaster
Nancy Baxter (nbaxter@myeloma.org)
Regional Director, Support Groups Southeast
Abbie Rich (arich@myeloma.org)
Hotline Coordinator
Andrew Lebkuecher (imfsupport@charter.net)
Comptroller
Debbie Birns (dbirns@myeloma.org)
Specialty Member Services Coordinator
Jennifer Scarne (jscarne@myeloma.org)
Director, IMF Europe
Kemo Lee (klee@myeloma.org)
Regional Director, Support Groups Northeast
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Robin Tuohy (tuohy@snet.net)
2
www.myeloma.org

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A
Pla
Message ceho
from lder
the President
Dear Reader,
As 2009 draws to a close, the first question is "WHERE DID IT GO?!"
variety of topics far too many to name.
This has been an incredibly busy year, and I'm pleased to report that
It's no wonder that the IMF is the num-
the IMF has been very productive on all fronts. So, I would like to take
ber one resource for information about
this opportunity to share with you what we've accomplished in our four
myeloma in the world!
main areas of focus.
Support:
Research:
The IMF works
As the myeloma community entered the era of
with over 100
tailored treatments, with new approaches aimed
Support Groups
at customizing each patient's treatment to his
and I'm so proud
or her specific needs, the successes of the IMF's
of the work that
International Myeloma Working Group (IMWG)
they do to reach out in their communities to
will soon make it possible for myeloma to be
help others with myeloma. The IMF's 3 Support
managed as a chronic disease. The IMWG consists
Group Coordinators criss-crossed the country visiting Support Groups
of 110 investigators from around the world who have joined together
to ensure that they had what they needed ­ everything from a place to
to advance the science and other clinical aspects of myeloma. To date,
hold their meetings, supplying them with materials, as well as securing
IMWG members have had 26 papers published in the most prestigious
outstanding speakers to keep them abreast of advances in myeloma treat-
peer-reviewed medical journals with more papers currently pending.
ment and research. And we held the 10th Annual Support Group Leaders
In June 2010 they will meet for a "Summit" where they will focus on 5
Retreat, which brought together Leaders from groups across the county.
key areas: epidemiology, diagnostic testing, molecular approaches for
Advocacy:
assessment of biology, diagnosis and treatment, new drugs, and updat-
In 2009 the IMF launched a new initiative to
ing the Myeloma Management Guidelines. The IMF's innovative research
support and advance myeloma legislation and
program has a strategic plan to make myeloma truly a chronic disease
priority policies. The Cancer Patient Statement of
and bring us to the cure.
Principles lies at the center of this effort, focusing
Education:
on prevention, innovation, equality of access and
Since the founding of the IMF 19 years ago, the way
insurance coverage, early approval of new treat-
people get information has changed dramatically.
ments and access to experimental treatments for
From having very few outlets in the past, today's
patients who have exhausted all other possibilities. This initiative will
patients have a myriad ways to obtain the informa-
educate and inform potential myeloma advocates about the legislative
tion they seek. Millions use the Internet as their
process and public policy to ensure positive changes for myeloma
"go to" resource, some prefer publications in hard
patients and their families. We also established an on-line Advocacy
copy, others want to talk to an actual person and
Action Center, a "one-stop-shop" for federal legislative and regulatory
utilize the IMF Hotline, and others prefer to attend a seminar. However,
information that helps IMF members quickly and effectively communi-
we're finding that a majority uses a mix of all of the above ­ and that's
cate with their Congressional Members on issues the IMF is tracking. To
great. This year the IMF held numerous Patient & Family Seminars and
join the Myeloma Action Network, receive advocacy updates, and see the
Regional Community Workshops across the U.S. and around the world.
IMF's public policy statements, please visit www.myeloma.org and click
Patients and their families learned about the advances in myeloma treat-
on the Advocacy tab.
ment and management from world experts and also learned from each
One of the events that helps make IMF programs and services possible
other. The exchange of information and personal experiences is such
is the Annual Comedy Celebration benefiting the Peter Boyle Memorial
an empowering and positive experience ­ one that just can't be beat.
Fund. More than 1,200 guests congregated at Los Angeles' historic and
This year, we continued to enrich the content available through our
elegant Wilshire Ebell Theatre & Club on November 7 to raise money in
website. Over 1 million visits to the website and over 6 million page
support of the IMF. To read more about it, please see the special supple-
views is something we're proud of, continuing to provide information
ment to this issue of Myeloma Today.
for patients, family members, doctors, nurses, healthcare providers,
and other interested parties. We reported on ground breaking news,
As always I welcome your thoughts and comments. The IMF would
conducted interviews, wrote articles, disseminated published papers
not be where we are today without your belief in and support of our
from the International Myeloma Working Group and from the Nurse
programs.
Leadership Board, produced videos ­ lots of videos ­ from interviews
Warm regards,
with Key Opinion Leaders on key topics (and in multiple languages,
too!), to educational videos for patients, clinicians and nurses. And our
Susie Novis
library now has over 100 publications in various languages on a wide
800-452-CURE(2873)
3

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Let ers to the IMF
IMF bracelets
IMF patient meetings
My relationship with the
Thank you for the wonderful IMF meet-
IMF began more than four
ing in Minneapolis, MN. Everyone
years ago when my Dad
was so approachable and supportive.
was diagnosed with mul-
I learned much at the seminar, and I
tiple myeloma and myelo-
appreciate the tremendous work that
dysplasia. He was over
goes into presenting an event like that.
80 years old and living in
I am also grateful for the Hotline;
Ohio, far from my home
the IMF coordinators have been very
Maureen Carroll and
on the West Coast. Being
helpful to us. My husband's high-risk
the IMF's Lisa Paik
an only child and having a
multiple myeloma has been especially difficult on the heels of colorectal
medical background, I was frustrated not to be able to go to his medical
cancer. Blessings to you all!
appointments. I did contact his doctors a few times but not enough to
Maureen Carroll
help my Dad like I really wanted to. So I went to the Internet and found
From the first IMF Patient & Family
the IMF, and your invaluable information became a source of support for
Seminar that we attended in St. Louis in
me. I eventually brought my Dad home to Seattle and cared for him the
1999, one year after our myeloma diag-
last two years of his life.
nosis, to our recent attendance at the
In February of 2009, my good friend Sandy Evanick was also diagnosed
Cincinnati IMF Regional Community
with myeloma. Shortly after Sandy's diagnosis, I ordered the IMF bur-
Workshop in October, we continue to
gundy bracelets for friends, family, and members of our Bunco Club and
be grateful to the IMF for all you do to
to wear as a reminder to pray for her daily. There are now about 60 of us
educate people with myeloma and the general public about this incurable
who wear the bracelets to support Sandy's ongoing recovery from a stem
(for now) cancer, as well as the latest research and treatments.
cell transplant and as a sign of support for the IMF.
The free-of-charge Regional Community Workshop was a day-long version
I am including a photo of some of us with our bracelets. Sandy's husband
of the IMF Patient & Family Seminar weekend format. We missed having
made a blow up of it for her hospital room and she got so much comfort
the breakout sessions that are such a key part of Patient & Family Seminars,
from knowing she wasn't forgotten.
but we got to listen to two Regional Community Workshop presenters (a
Diana Woodward
myeloma doctor from Indianapolis and a nurse from the Cleveland Clinic
who is a member of the IMF Nurse Leadership Board), and we appreciate
IMF Myeloma Manager
all the information included in their sessions. We also appreciate having
I was very pleased that I was able to bring a printed copy of my Myeloma
the opportunity to spend time with other myeloma patients and their fam-
Manager, with the last two years of my blood work, when I attended the
ily members. Whether we are newly diagnosed or long-term survivors, it
Myeloma Canada Patient & Family Seminar in Calgary. Dr. Donna Reece
always helps to know that we are not alone on our journey.
was able to really see the trends I was speaking of and, in just five minutes
In the 10+ years since the myeloma diagnosis we have attend all IMF
of time, was able to make an educated decision on what I should do. An
educational patient meetings within a reasonable driving distance of
excellent reason right there to use the Myeloma Manager program, espe-
our home. Both of us have learned so much from the myeloma experts
cially given that I was asking for her time when she was anything but pre-
we have met at the IMF meetings. Over the years, it has become clear
pared for such a question. I came away feeling much heartened by what
to us that this disease changes over time, as does the range of available
she was able to tell me based on what she could see on the spread sheet.
treatments, so it is essential to keep current with all the developments
So, my heartfelt THANK YOU to the IMF for developing the
in the field. Just when you think you have finally become well-versed in
Myeloma Manager!!!
myeloma, something changes. So there is never a point when one can
Beth Hamilton
say that there is nothing left to learn. The continuing education and the
camaraderie are invaluable to those of us who plan to keep on "keeping
Results:
Record and track
on" and the IMF is a key resource for both.
your lab results
Chuck & Mary Anne Martz
Home:
Review latest results,
track upcoming
appointments
and tasks,
access news
Graphs:
Create graphs of
your lab results
Contacts:
Store important
contacts, link
Notes:
contacts to tasks,
Personal journal,
appointments, notes
integrated scanning,
attach files
Calendar:
Track doctor appointments
Information:
and treatment regimens
Access your
Participants at the Cincinnati Regional Community Workshop
personalized
reference shelf,
IMF news
4
www.myeloma.org

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Scientific & Clinical
studies presented at asH
may offer new approacHes to treating muLtipLe myeLoma
By Brian G.M. Durie, MD
Aptium Oncology
"This has been one of the most exciting medical meetings for
Cedars-Sinai Comprehensive Cancer Center, Los Angeles, CA
myeloma in recent years. We believe patients with myeloma and
Introduction
related blood cancers wil have more treatment options that could
The 51st annual meeting of the American Society of Hematology (ASH)
lead to a bet er quality of life."
was held December 5 through 8 in New Orleans, LA. This important
­SusieNovis,IMFpresidentandco-founder
conference for the hematology community was especially exciting for the
myeloma research community. Presentations covered both elderly and
In addition, interviews with 55 major presenters at the ASH meeting are
younger patients and, for the first time, ASH covered all stages of multiple
also available on the IMF website www.myeloma.org.
myeloma. Studies investigated treating the disease in every possible set-
Educational symposia
ting, from smoldering (pre-symptomatic) myeloma to long-term continu-
The IMF's symposium ­ the Super Friday Workshop ­ took place on
ous therapy with and without stem cell transplants, and onto promising
December 4. This year, the speakers included S. Vincent Rajkumar (Mayo
new regimens for patients who no longer respond to existing drugs.
Clinic, Rochester, MN), Mario Boccadoro (University of Torino, Italy),
A large number of abstracts, nearly a quarter of the presentations submit-
Philippe Moreau (Nantes, France ­leader of the French myeloma study
ted this year to the annual meeting of the American Society of Hematology
group, IFM), and Robert Orlowski (MD Anderson, Houston, TX). This par-
(ASH), were for multiple myeloma, with one being presented at the
ticular educational session takes a practical approach to the management
prestigious plenary session. This plenary abstract dealt with the role of
of myeloma, illustrating for the audience how to integrate the use of the
Velcade® (bortezomib) combinations in the frontline setting, assessing
novel agents into the management of myeloma. This is increasingly impor-
both induction and maintenance in a randomized fashion.
tant as we now have three major novel agents in myeloma ­ Thalomid®
A new aspect of this year's ASH meeting was the focus on treatment or
(thalidomide), Revlimid® (lenalidomide), and Velcade ­ with several
understanding of the disease from its earliest stages on. Below, I will
promising new agents in the development pipeline. How do practicing
briefly highlight some of the myeloma-related news coming out of the ASH
clinicians introduce these agents into their day-to-day practice? The Super
meeting which appeared to generate the most interest and enthusiasm
Friday Workshop reviewed how patients should be diagnosed and staged,
among those present at the meetings. A more detailed report is being
the different myeloma prognostic categories, the role of cytogenetics
prepared by IMF medical writer Lynne Lederman, PhD, which should
and genetic profiling in identifying the best treatment for patients, the
be available shortly in print and on the IMF website www.myeloma.org.
Continues on Page 6
asH 2009 ­ IMF ADVOCACY BOOTH
"As part of the broader IMF mission, we are leading a coalition
By Arin Assero
of blood cancer organizations in cal ing for improved access to
Director, Communications & Public Policy
A
research and resources, as wel as equitable insurance coverage and
long with the IMF's coalition partners,
reimbursement for patients with hematologic malignancies until
the MDS Foundation (MDSF) and Tackle
cures are found. The IMF's Cancer Patient Statement of Principles
Cancer Foundation (TCF), the IMF brought
initiative hosted a booth at ASH, and this inaugural ef ort was
our Cancer Patient Statement of Principles to
the 2009 meeting of the American Society of
quite successful."
Hematology (ASH) in New Orleans. The prin-
­BrianG.M.Durie,MD
ciples emphasize equal insurance coverage,
myeloma helps build support for our joint cause, the ultimate cure of this
prevention research, continued innovation,
disease. Patient advocates were also able to attend ASH sessions to learn
early approvals, and expanded access to experimental drugs. Since the
about new treatments in the pipeline for treating myeloma.
launch of our national advocacy initiative and the introduction of our prin-
ciples at the annual meeting of the American Society of Clinical Oncology
One of the IMF patient advocates spent much of his time at ASH blogging
(ASCO) in May of this year, the IMF has gained support of myeloma
from the IMF Statement of Principles booth. "The IMF has been working
patients nationwide, built an active legislative campaign (see http://www.
hard to organize the cancer community and to lobby Congress to help
capwiz.com/myeloma), and secured bi-partisan support for state and fed-
cancer patients," he says. "I am so blessed to be healthy enough to learn
eral initiatives that address the issues raised by this program.
and share anything and everything I can with my fellow myeloma patients.
It is a responsibility I take very seriously." And this is a responsibility we
The ASH meeting was the perfect platform for our patient advocates to
at the IMF take seriously too as we move ahead to help assure not only
inform researchers, clinicians, industry, and the media about the issues
continuing research and development of new treatments, but that patients
they face while living with an incurable-but-treatable cancer. Such one-on-
have ready access to those treatments. Attendance at ASH was one small
one interaction of the patients and the medical professionals working in
but critical step in this effort. mt
800-452-CURE(2873)
5

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Scientific & Clinical
ASH PRESENTATIONS -- continued from page 5
integration of novel agents along with autologous transplant for younger
key component of ASH.
patients, drug combinations, maintenance, and the approach to relapsed/
Smoldering myeloma
refractory disease.
Treating patients before they show any symptoms is controversial, but a
There was also an important educational session put on by ASH that took
study at the University of Salamanca in Spain of Revlimid in smoldering
place on Saturday afternoon and Sunday morning. Speakers Jesus San
myeloma is an important first step toward reconsidering how patients
Miguel (University of Salamanca, Spain), Antonio Palumbo (University
are treated at the earliest stages of this cancer. The phase I/II study from
of Torino, Italy), and Keith Stewart (Mayo Clinic, Scottsdale, AZ) talked
Maria-Victoria Mateos, MD, demonstrated for the first time that early
about the treatment of younger and older patients and relapsed/refrac-
intervention treatment before clinical symptoms occur may delay the
tory disease.
onset of active myeloma (abstract #614). In the observation-only arm of
The educational symposia at ASH are just as important as the scientific
this randomized study where patients are watched closely but not treated,
presentations of new study results. The hematologist-oncologist clinicians
50% of patients with high-risk smoldering myeloma progressed to active
need guidance on how to best use the novel drugs to treat their myeloma
myeloma in 19 months, including the classic symptoms of bone disease.
patients. Often, because of time constraints, researchers presenting results
However, in 45 patients who began and continued active treatment with
from their studies cannot put the data into a comprehensive context.
Revlimid at this early stage, no disease progression was observed after a
But the clinician needs to know how those results stack up against other
median follow-up of 16 months. It is an innovation to introduce the use
results from other studies being presented, or against the results that have
of an agent, in this case Revlimid, at the earliest time point to see if early
already been published. Discussions that look at both the older and the
treatment reduces the complications of myeloma ­ such as bone disease
newer results in the context of day-to-day management of patients are a
Continues on Page 15
asH 2009 ­ A PATIENT'S PERSPECTIVE
patients are living longer with myeloma. Also, on the front end of the
By Jack Aiello
myeloma process, treatments for MGUS and "smoldering" myeloma that
T
may potentially delay the onset of disease are being evaluated.
he 2009 meeting of the American Society
of Hematology (ASH) was the fourth year
New drugs in development continue to produce good trials results.
I've attended this important annual gathering.
Personally, I'm always grateful to see toxicity results, both hemato-
The 25,000 attendees from all over the world
logic (e.g. pulmunary embolism, neutropenia) and non-hematalogic
included clinicians practicing in the field of
(e.g. peripheral neuropathy), presented as part of every trial and dose-
hematology/oncology, lab researchers, scien-
escalation results. And high-risk myeloma, which accounts for about 25%
tists, and representatives from pharmaceutical
of patients, now appears to be successfully overcome in some patients
companies. Many results are presented from a
with the use of novel agents and/or transplantation.
broad range of clinical trials and research centers.
I appreciated having the opportunity to listen to myeloma experts pre-
As I tried to gather my notes in order to share my impressions of ASH
senting their findings at ASH, and found the following remarks most
with fellow patients and caregivers who read Myeloma Today and/or visit
interesting:
the IMF website, I found myself looking at a veritable alphabet soup of
· "I can't really tell you which triple regimen [VTD, RTD, VCDx, or VRDx]
combination treatments that comprise the current approach to myeloma
is better than the other. And do these justify that the `kitchen sink' or
therapy. VTD, RTD, VCDx, VRDx, VPM, and more! While there is still no
`sequential' treatment approach is better?" - Ann Morbacher (USA)
"best" treatment for all patients, what we currently have are options for
many. If myeloma experts are still debating treatment approaches of
· "The goal for treating a young patient (< 65-70yo) should be long-term
sequential "more gentle" (low-dose) therapies as opposed to the "kitchen
survival (10-20 yrs) with good quality of life."- Jesus San-Miguel (Spain)
sink" (three- and four-drug combinations) mentality, it's no wonder that
· "Consider dose-reduction as the patient ages." - Mario Boccadoro (Italy)
the overall treatment picture is so difficult for most of us patients to truly
For someone like myself, diagnosed with Stage III multiple myeloma 15
understand. And with so many treatment choices, it now appears that
years ago, the myeloma world has made incredible strides, especially since
the role of transplantation in myeloma has evolved as a treatment option
about 2000. While there continue to be many unanswered questions, the
rather than the gold standard it once was.
bottom line is that there are now many more effective treatments (perhaps
And questions extend beyond treatment combinations to issues of dos-
with maintenance) for myeloma, providing patients with better opportu-
age levels and maintenance. A few years ago, we saw the recommended
nities to manage their disease. For me personally, even though I've been
dosage level of dexamethasone get reduced from 40mg on days 1-4 to
in complete remission for the last eight years without treatment, I know
40mg just once per week. Today, other "standard" dosage levels are being
enough to expect my myeloma to return one day. As such, I'm grateful
tested (e.g. bortezomib being given just once/week instead of twice).
for the enormous progress that continues to be made developing new
"Maintenance" (not a great word because it may well be treatments that
myeloma treatments, both for the newly diagnosed patients and for those
continue to improve response) has become a more important topic as
like me. mt
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Scientific & Clinical
2010 imf researcH grant recipients announced
The recipients of the 2010 IMF Research Grant awards were announced at the gathering of the
Foundation's Scientific Advisors, held at the 51st annual meeting of the American Society of Hematology.
For the past 15 years, the IMF's research program has been funding myelomatousbones,aswellasduetopotentialabnormalpropertiesof
promising clinical investigators from around the world in an effort
bone marrow mesenchymal stem cells (MSCs). Preliminary in vitro experi-
to improve outcomes for myeloma patients. The 2010 IMF grant award
ments by Dr. Li and colleagues showed that MSCs from normal bone mar-
presentations took place during the 51th annual meeting and exposition
row directly inhibit osteoclast formation and stimulate osteoblast differen-
of the American Society of Hematology (ASH). Susie Novis (president and
tiation, suggesting that these cells affect bone remodeling and myeloma
co-founder of the IMF), Dr. Brian G.M. Durie (chairman and co-founder
cell growth via interaction with the host osteoclasts and osteoblasts. These
of the IMF), Dr. Robert A. Kyle (chairman of the IMF Board of Scientific
findings have led to formulation of an overall hypothesis that, in contrast
Advisors), and many IMF Scientific Advisors from around the globe were
to patient MSCs, normal MSCs can help control myeloma directly and
on hand during the research grants award presentation ceremony.
indirectly by preventing bone loss and stimulating bone formation. The
research project will determine the direct effects of MSCs on osteoclasts
The IMF grants are funded by donations from private individuals. Junior
and osteoblasts, shed light on molecular mechanism by which MSCs
investigators receive funding in the amount of $50,000. Senior inves-
affect osteoclastogenesis and osteoblastogenesis. This can lead to new
tigators are funded at $80,000. Over the years, the IMF research grant
approaches to the treatment of myeloma bone disease.
program has lead to many publications, enabled investigators to become
established in the field of myeloma and made important contributions to
"Characterization and preclinical
understanding the biology of myeloma and developing better therapies.
evaluation of NKT cells in multiple
We are certain that the work of the recipients of the 2010 IMF research
myeloma" *
grants will continue to contribute significantly to the field of myeloma.
Eline Menu, PhD
2010 Brian D. Novis Senior Research Grants
Vrije Universiteit Brussel (VUB)
"Development of the antihelmintic
Brussels, Belgium
flubendazole as a novel therapeutic
One strategy to target multiple myeloma is using
agent for the treatment of multiple
a patient's immune system to target the tumor.
myeloma"
However, myeloma cells can evade the immune
system. Therefore, new drugs are being studied that can activate the
Aaron Schimmer, MD, PhD, FRCPC
immune system and enhance anti myeloma activity. In this project, Dr.
Princess Margaret Hospital
Menu and colleagues will use the ST33MM mouse model to test a new
Ontario Cancer Institute
activator of NKT (natural killer T-lymphocytes) cells preclinically. They
Toronto, ON, Canada
will first characterize the NKT population in these mice and test their
This project takes the unique approach of studying drugs approved by the
functionality against ST33MM cells and a CD1d transduced ST33MMvt cell
FDA for other diseases to assess if they have unrecognized anti-myeloma
line. They will then compare the efficiency of a new analogue in its capac-
activity. Any such drug can have an accelerated approval for myeloma
ity to activate NKT cells and reduce myeloma burden both in vitro and in
use if significant anti-myeloma activity is demonstrated. Dr. Schimmer
vivo. This study will provide a potential new approach for immunotherapy
and colleagues have already identified that flubendazole, a drug used for
in myeloma.
intestinal worms, has anti-myeloma activity. The research team aims to
"Reolysin: a novel reovirus-based
advance the clinical development of flubendazole for myeloma by identify-
therapy for multiple myeloma" **
ing biomarkers for use during a clinical trial and develop a Phase I clinical
trial for this compound in patients with relapsed and refractory myeloma.
Steffan Nawrocki, PhD
The University of Texas
2010 Brian D. Novis Junior Research Grants
Health Sciences Center
"Mesenchymal cell cytotherapy
San Antonio, TX
for multiple myeloma"
The proteasome inhibitor bortezomib (Velcade®)
is an important new drug for the treatment of
Xin Li, PhD
myeloma. Based on this success, novel combi-
Myeloma Institute for Research
nation therapies with bortezomib are being tested for efficacy and for
and Therapy
their potential in circumventing drug resistance in myeloma. The reo-
Winthrop P. Rockefeller Cancer Institute
virus is a naturally occurring virus that is non-pathogenic and has been
University of Arkansas
for Medical Sciences
reported to preferentially replicate in cancer cells, but not in normal
Little Rock, AR, USA
tissue. This observation prompted the development of the reovirus-based
anticancer agent Reolysin®, which has already demonstrated promise in
Induction of myeloma bone disease is mediated through increased
early preclinical and clinical studies. However, the mechanism by which
production of pro-osteoclastogenic and anti-osteoblastogenic factors in
Reolysin induces tumor cell death remains unclear. Myeloma cells have
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Scientific & Clinical
2010 gRANT RECIPIENTS -- continued from page 7
remarkably high rates of protein synthesis to produce
proliferation. Recent findings suggest an important role of histone methyl-
large amounts of immunoglobulins. Therefore, it has
transferase MMSET (Multiple Myeloma SET domain protein) in malignant
been suggested that these cells may be hypersensitive
progression of myeloma. In about 15% of all myeloma cases, the t(4;14)
to endoplasmic reticular (ER) stress. Dr. Nawrocki
translocation brings MMSET gene under the control of the enhancer
and colleagues hypothesize that Reolysin preferen-
followed by increased, as compared to healthy plasma cells, expression
tially induces the accumulation of viral products in
of the protein. It is not currently known how the increased expression of
myeloma cells and that this selectively stimulates
MMSET in plasma cells is translated into myeloma development and/or
ER stress-mediated cell death. Since abnormal pro-
progression. Provided that MMSET acts as a transcriptional co-repressor
Dr. J. Carew
tein accumulation can trigger cancer cell death, the
and histone methyltransferase, Dr. Yurchenko and colleagues propose
accepted the
award on behalf simultaneous induction of different types of protein
that the developmental program of normal and neoplastic plasma cells
of Dr. Nawrocki
buildup (ubiquitin-conjugated and viral) may be a
is regulated by this enzyme. Specifically, they hypothesize that deregula-
promising anticancer strategy. Moreover, the high protein synthesis rates
tion of MMSET in plasma cells contributes to the disease initiation and/
of myeloma cells (compared with low protein synthesis rates of normal
or progression. The goal of this research project is to establish the role of
cells) may render them uniquely sensitive to proteotoxicity-mediated
MMSET-dependent genetic program in normal plasma cell differentiation
cell death. Dr. Nawrocki will investigate this possibility by evaluating the
and myelomagenesis in mice. To achieve this goal, this project aims to
benefit of a bortezomib and Reolysin combination therapeutic strategy.
define the role of MMSET in normal plasma and myeloma cell develop-
The knowledge gained from this research will be rapidly translated into a
ment and to identify the genetic network directly controlled by MMSET
clinical trial and has the potential to significantly impact myeloma therapy.
in B cells.
"Bone marrow microenvironment
2010 IMF Aki Horinouchi Research Grant
and multiple myeloma chemotherapy
"Novel anti-myeloma therapy by
optimization"
targeting molecular signaling
Ariosto Silva, PhD
regulated by galectin family
H. Lee Moffitt Cancer and Research Institute
proteins" ****
Tampa, FL, USA
Junya Kuroda, MD, PhD
While systemic chemotherapy for myeloma is
Division of Hematology and Oncology
often initially quite successful, tumor sites that
Kyoto Prefectural University
are resistant to therapy invariably remain as mini-
Kyoto, Japan
mum residual disease (MRD) even after high-dose
Because myeloma cells acquire the chemo-resistant phenotype not only
treatment. The mechanisms of resistance to chemotherapy include both
by cell intrinsic molecular abnormalities but also by the support of extra-
micro-environmental and cellular factors such as (1) regional hypoxia in
cellular bone marrow (BM) components, it is essential to development
bone marrow resulting in decreased drug effectiveness due to absence
new agents simultaneously targeted for those two divergent but mutually
of intermediate oxygen free radicals, (2) environmentally mediated resis-
interacting, abnormal molecular signaling networks for myelomagenesis.
tance (EMDR) due to signaling between tumor cells and extracellular
To this purpose, Dr. Kuroda and colleagues are currently investigating
matrix (ECM), bone marrow stromal cells (BMS), and endothelial cells
the molecular signaling modulation which is specifically responsible
(EC), and (3) phenotypic resistance through upregulation of xenobiotic
for chemo-resistance of myeloma cel s in tumor microenvironment
metabolism or DNA repair pathways. Dr. Silva and colleagues will examine
model consisted of BM stromal cells, cytokines, and extracellular matrix.
these complex systems using an approach characterized as "integrated
Preliminary data suggest that several members of galectins, a family of
mathematical oncology" in which mathematical models are combined in
animal lectins that show affinity for b-galactosides (such as galectin-3 or
an iterative way with in vivo and in vitro experiments. Ultimately, through
galectin9), play important roles for myeloma cell survival, the resistance
understanding of the dynamics that govern emergence of chemotherapy
to cellular insults, cell adhesion, or deregulated cell proliferation in BM
resistance in myeloma, this research project will explore alternative treat-
microenvironment.
ment strategies based on understanding these dynamics to slow the evolu-
tion and growth of resistant phenotypes.
mt
"MMSET and epigenetic control in
* This grant is funded by Michael McKean in honor of Lee Grayson.
t(4;14) myelomas" ***
** This grant is funded by Carol Klein and Nancy Moses through their annual
Vyacheslav Yurchenko, PhD
Afternoon Tea event.
Rockefeller University
*** This grant is funded by the Multiple Myeloma Networking Group, the Central
Laboratory of Lymphocyte Signaling
New Jersey Multiple Myeloma Support Group, and the Northern New Jersey
New York, NY, USA
Multiple Myeloma Support Group.
The overexpression of IgH enhancer/promoter
**** This annual myeloma research grant was instituted in 2002 by IMF Japan
driven genes such as cyclin D1, cyclin D3, or
in memory of its founder, Aki Horinouchi.
c-maf is likely to contribute to myeloma cell
8
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Scientific & Clinical
tHe roLe of freeLiteTM and HevyLiteTM serum assays in myeLoma
Myeloma Today in conversation with Dr. Brian G.M. Durie
Would you please bring us up to date on the use
Are there pros and cons to using Freelite to
of FreeliteTM serum free light chain assays in
assess minimal residual disease?
multiple myeloma?
It is useful because we can get some measurable num-
For several years now, FreeliteTM serum free light
bers. But, at the very low levels of free light chains,
chain assays, which measure free lambda and free
there is fluctuation and this up and down bounce can
kappa immunoglobulin light chains, have been used
be disconcerting to patients and physicians alike. So
for the detection of oligosecretory (sometimes called
it is important for patients to keep in mind that they
"non-secretory") multiple myeloma and for assess-
are being monitored at such low levels of disease that,
ment of patients with MGUS (monoclonal gam-
even with the numbers fluctuating, the test results
mopathy of undetermined significance), as well as for
are usually way below where one needs to take any
monitoring disease progression and for evaluating
action.
treatment response in these patients. Patients with
The key question is what are the situations where
oligosecretory myeloma do not have the typical M
such monitoring is actually useful? One example of
protein spike in either blood or urine, and Freelite
this is the normalization of the Freelite Ratio in a
has been an effective tool in diagnosing and monitor-
responding patient ­ when a patient has a normal
ing such patients.
serum or urine spike plus the Freelite ratio tests as
Is Freelite also applicable to myeloma patients
Brian g.M. Durie, MD
normal. This is part of the definition of stringent CR
Aptium Oncology
who have the M spike?
Cedars-Sinai Comprehensive
(sCR) ­ the absence of the M spike, the immunofixa-
This potential application of Freelite is still being
Cancer Center
tion is negative, the bone marrow is normal, and the
Los Angeles, CA
explored. For example, baseline levels of Freelite have
Freelite ratio is normal. This is a definitive endpoint
prognostic significance with higher levels indicating more aggressive
which is part of the International Myeloma Working Group (IMWG) uni-
disease. Freelite is currently used as part of myeloma clinical trials being
form response criteria and now being prospectively evaluated as part of
conducted in different settings, and we hope that the data will clarify the
ongoing trials.
utility of Freelite in patients who are not oligosecretory. In other words, if
So how is Freelite being used in the ongoing myeloma clinical
a myeloma patient has a regular M component, it is the spike that should
trials?
be measured and monitored. However, with the introduction of novel
In all the different protocols and trials, the studies are looking at the dif-
anti-myeloma therapies, more and more patients are having a complete
ferences between sCR and CR with an abnormal Freelite Ratio. Freelite
response (CR) or a very good partial response (VGPR) assessed using the
might turn out to be the best way to identify best reponse, but there is
serum and/or urine M component. When patients have a very low level of
no final answer yet. This is an ongoing process, with bits of data coming
disease, they still have low levels of measurable free light chains. So the
out sequentially.
question we are now addressing is the utility of Freelite for quantitative
assessment of minimal residual disease. It is useful to apply Freelite for
Another area of study is to look at patients who have Bence Jones
monitoring in this setting. For example, this test gives an earlier indication
myeloma when the monoclonal light chain protein present in urine. Is
of disease relapse.
it possible to replace the 24-hour urine collection to measure the urine
light chains with a blood test to check the level of serum light chains? The
urine collection is more precise, so this remains our recommendation at
present. There just isn't the same security with the serum test because
of the fluctuating numbers. At this time we can say that even though the
serum test might reduce the frequency of the urine test, the 24-hour urine
collection remains the standard test.
What can you tell us about the new HevyliteTM assay?
HevyliteTM is a new assay currently being assessed for its usefulness in
When immunoglobulin molecules are produced by the plasma cells in the
managing myeloma, which allows us to look directly at the heavy chains
bone marrow, the heavy chains (g, A, M, D, or E) and the light chains
of the serum M spike. For example, if you have IgG myeloma, the Hevylite
(kappa or lambda) are produced separately. The kappa and lambda
test looks at IgG kappa. Clinically, the Hevylite test is potentially very
molecules are bound to the heavy chains and intact immunoglobulins are
assembled, then transported to the surface of the plasma cell. Free kappa
important because it can actually measure M proteins when they are of
and lambda light chains are produced in excess, and the Freelite test
low concentration or when they are hidden by other protein bands. For
quantifies the free kappa and free lambda light chain concentrations.
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Scientific & Clinical
FREELITE AND HEVYLITE -- continued from page 7
quantifying M proteins, Hevylite promises higher sensitivity than serum
protein electrophoresis (SPE or SPEP) and a numerical evaluation not
Target epitopes
available with immunofixation electrophoresis (IFE). A negative IFE is the
(in black) for Hevylite
antibodies are on the
definition of CR and, with the Hevylite test, CR would actually become a
constant regions
number that could potentially go to zero.
between the heavy
and light chains
What is the current availability of the Hevylite test?
of immunoglobulin
molecules.
In the early part of 2010, the company developing Hevylite (The Binding
Site) will be going through the approval process in the US for their IgA
kappa and IgA lambda kits, with IgG kits expected to become available
three to six months later. This could be very useful for patients with nega-
tive or questionable IFE as well as for serial monitoring.
Have there been any Freelite/Hevylite news coming out of the 2009
Editor's Note: To learn more about Freelite, please see the Understanding
annual meeting of the American Society of Hematolog y (ASH)?
Serum Free Light Chain Assays brochure published by the IMF or visit
At ASH, members of the International Myeloma Working Group (IMWG)
www.thebindingsite.com, and stay tuned for upcoming data from the
IMF and the IMWg about the use of Freelite and Hevylite serum assays
have reviewed and discussed which clinical studies are most applicable to
in myeloma.
answer our questions about the use of Freelite and Hevylite in myeloma.
It is anticipated that these discussions will lead to fruitful collaboration in
the future development and evaluation of these assays in 2010. mt
We speak
your language
The IMF publishes a comprehensive
library of informative myeloma resources.
Used by patients, caregivers, healthcare
professionals, and anyone needing a
reliable source of up-to-date information
regarding the disease, these publications
are critical to a better understanding
of myeloma.
10
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News & Notes
The content for the News & Notes section of Myeloma Today
myeloma. Once considered a "rare disease of the elderly," myeloma is
is drawn from a long list of publications based on inquiries
increasingly being diagnosed in patients under 45 years old, including
received by the IMF Hotline and the interests expressed by
some of the early responders to the 9/11 World Trade Center site. Now a
our readers.
published study may help explain why.
AOSW survey shows cancer costs negatively
The study from researchers with the IMF gene bank, Bank on a Cure®,
impact focus on recovery
identified several changes in DNA sequences called SNPs (single nucleo-
A survey conducted by the Association of Oncology Social Work (AOSW)
tide polymorphisms) that are associated with a risk of bone disease in
demonstrates that financial hardships often complicate or compromise a
myeloma. Further analyses showed that many of these DNA changes
patient's battle against cancer. Money issues reduce patients' compliance
may be involved with the way the human body responds to certain envi-
with their cancer treatment even though treatment is key to their recovery.
ronmental toxins, providing a possible link between myeloma and the
According to the study, 87% of patients with catastrophic/major financial
environment. The findings were published in the journal Leukemia on
burdens due to cancer treatment say costs have a negative impact on their
August 6, 2009.
ability to focus on recovery, 68% of patients experience financial hardship
Dr. Brian G.M. Durie, lead author of the study and Chairman of the IMF
due to medical bills, 66% of patients with major financial challenges suf-
said: "This is a hypothesis-generating study. While the functional role of
fer depression/anxiety, 55% of patients surveyed say the stress of dealing
many SNPs is still uncertain, this study is supportive of the notion that
with costs negatively affects their ability to focus on their recovery, 54%
genetic factors affecting toxin breakdown may be related to the develop-
of patients and caregivers with a major/catastrophic financial burden said
ment of myeloma. This gives us an important starting point for further
that it has become more difficult to afford treatment for cancer in the
studies."
past year, 40% of patients reported depleting their savings, almost 30%
reported dealing with bill collectors, 29% of patients delay filling prescrip-
The findings may help explain a widely reported study in the Journal
tions due to financial pressures, and 22% skip doses.
of Occupational and Environmental Medicine that found more cases of
myeloma among younger responders to the 9/11 World Trade Center
The survey results of interactive datasets are part of an ongoing effort by
site than would normally be expected. The findings are also supportive
the AOSW to increase understanding and support for people with cancer
of a study published earlier this year that suggests a link between certain
and their families. Although most patients report experiencing cost-relat-
pesticide exposures in agricultural workers and a precursor to myeloma.
ed psychosocial stresses that social workers are adept at helping manage,
Previous studies have also shown an increased risk for myeloma among
only 34% of patients surveyed report actually utilizing a social worker as
firefighters, and the IMF has issued guidelines for firefighters for the pre-
a resource. In fact, only about half feel comfortable speaking with health
vention and treatment of this disease.
professionals about financial issues. Study findings show that nearly all
cancer patients, including those with blood cancers such as multiple
"Multiple myeloma is not a familiar cancer to patients or even to many
myeloma, consider effectiveness before all other factors when determining
doctors, but taken together, these studies say it should not be over-
their treatment plan and rank the cost of treatment last in their decision-
looked," said Susie Novis, President and Co-founder of the IMF. "While
making process when initially diagnosed. Study statistics were based on
multiple myeloma cannot be cured, it can be treated with new, targeted
169 cancer patients, 131 caregivers, and 153 social workers. Patient and
therapies including REVLIMID®, VELCADE® and THALOMID®. These
caregiver results are presented in aggregate. The survey was developed by
studies tell us it is critically important for medical practitioners to know
Kelton Research in conjunction with Millennium: The Takeda Oncology
the possible risk factors for myeloma along with the early warning signs
Company under the guidance of the AOSW.
so they will be alerted to test for it."
For more information, please call the IMF at 800-452-CURE (2873). Our
The importance of bone marrow
Hotline Coordinators are here to answer your questions and help guide
examination in determining complete
you to available resources. CancerCare's new "Door to Door" initiative,
response
which offers grants to individual patients with myeloma to help with costs
Dr. Cheng E. Chee and colleagues from Mayo Clinic in Rochester, MN,
of transportation to and from medical care, is detailed below. The IMF
have studied the importance of bone marrow (BM) examination in
is also actively involved in advocacy efforts that bring the voices of the
determining complete response (CR) to therapy in patients with mul-
myeloma community to the current debate on health care reform and
tiple myeloma. The current definition of complete response in myeloma
related issues.
includes a requirement for a BM examination showing less than 5% plas-
Possible genetic link between environmental
ma cells in addition to negative serum and urine immunofixation. There
toxins and myeloma
have been suggestions to eliminate the need for BM examinations when
defining complete response. The investigators evaluated 92 patients with
Newly published data may provide a possible genetic link between envi-
myeloma who achieved negative immunofixation in the serum and urine
ronmental toxins and bone disease, the characteristic feature of multiple
after therapy and found that 14% had BM plasma cells more than or equal
Continues on Page 14
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Education & Awareness
spotLigHt on advocacy
IMF Launches Major New Advocacy Initiative
By Christine Murphy
Did you know that your Congressional
The IMF has recently created
Members make decisions each and every day
an online Advocacy Action
that impact your health? It's true! Each year the
Center on the IMF website
United States Congress determines how much of
as a "one stop shop" for fed-
the federal budget will be dedicated to medical
eral legislative and regulatory
research and makes policy decisions that may
information so that myeloma
affect how you obtain treatment for myeloma.
advocates can quickly and
effectively communicate with
A strong advocacy program is essential to supporting and advancing
their Congressional Members
myeloma legislation and priority policies. The IMF has just launched a
on issues the IMF is tracking
whole new advocacy initiative and is actively looking for myeloma advo-
for you.
cates to "join the team." The involvement of myeloma patients and their
loved ones in addition to myeloma doctors, nurses, and researchers in
By visiting the IMF Advocacy
the legislative process are vital to IMF's mission of improving the quality
Action Center at www.capwiz.
of life of myeloma patients while working toward prevention and a cure.
com/myeloma/home, you can
send messages to your legislators directly from the site on issues of impor-
IMF's new advocacy initiative is designed to:
tance to the myeloma community.
· EDUCATE and inform YOU and other potential myeloma advocates
like you about the public policy and legislative process
The Advocacy Action Center also includes such features as:
· ENCOURAGE involvement in our government to bring about change
· Template Letters you can personalize and send via e mail or fax to your
for myeloma patients, and
Members of Congress on crucial policy issues.
· ENSURE positive change in health policy for myeloma patients and
· Sponsor Track attaches information on relevant bill sponsorship on the
their families.
bio pages of Members of Congress.
· A Vote Scorecard lists every Member of Congress and how they voted
If you are a myeloma patient, a caregiver, a doctor, nurse, researcher, or
on bills of interest to the myeloma community.
know someone affected by myeloma, we need your help! To make a dif-
ference, you need to make your voice heard.
· Congress Today provides daily schedules of House and Senate activity,
including committee hearing schedules.
There are three important actions you can take today to join the IMF in
· Tell a Friend enables users to send Alerts, Votes, and other legislative-
our fight.
related information to one or more other potential myeloma advocates.
Take Action: Write Your Elected Officials
· A searchable Guide on National and Local Media includes news-
Your Congressional Members want to hear from you! Members of Congress
papers, magazines, and TV networks and stations in your area; users
are most responsive to people from their own states and communities,
can use this information resource to send e mails, faxes or printed
and they need to hear from myeloma advocates about the priorities and
letters to newspaper journalists, radio talk show hosts, and television
concerns of the myeloma com-
commentators.
munity. Unless they hear directly
Educate Yourself: Learn More about
from myeloma advocates, poli-
cymakers will fail to address the
Myeloma Advocacy Issues & Legislation
concerns of the myeloma com-
Want to learn more about the issues and legislation important to the IMF
munity. Policymakers must have
and the myeloma community? The IMF produces statements and letters
your input to be aware of the
aimed at decision-makers on a variety of public policy issues that the IMF
needs in their communities and
supports including access to clinical trials, funding for myeloma research,
the ramifications of changes in
and health care reform.
policy. A well-informed, articu-
To keep myeloma advocates informed of moving legislation in Congress,
late, passionate myeloma advo-
the IMF will be drafting advocacy updates twice a month on issues and
cate can be a valued resource to
legislation important to the myeloma community. The email newsletter
elected officials and their staff,
Myeloma Minute and the quarterly publication Myeloma Today will also
raise issues of importance to the
include advocacy updates. These updates, along with the IMF's public
myeloma community, and help
policy statements, can be viewed online on the IMF Advocacy page at
craft and implement necessary
www.myeloma.org.
legislative solutions.
12
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Education & Awareness
Get Involved: Sign Up for the Myeloma
3) Do's and Don'ts in Government Relations;
Action Network
4) a Glossary of Legislative Terms; and,
By becoming a member of the Myeloma Action Network you will help
5) a Guide to Legislative Staff Titles.
the IMF to focus our "email alerts" directly to you and other myeloma
advocates who reside in a specific state or district represented by legisla-
You can download your own Advocacy Toolkit directly from the Advocacy
tors we need to target. These alerts provide strategic information to affect
section of the IMF's website at www.myeloma.org or you can contact the
key policy issues of interest to the IMF and the myeloma community. To
IMF (see below) and ask us to send you an IMF Advocacy Toolkit.
receive the email alerts, we need you to sign up on the IMF Advocacy
Advocacy Partnerships
Action Center at www.capwiz.com/myeloma/home.
One of the best ways to achieve success is to join forces with other orga-
The new Advocacy website page on the IMF website features more infor-
nizations with shared interests and goals. The IMF leverages its resources
mation to keep myeloma advocates informed ­ as well as how to conduct
by collaborating with others in the cancer community to promote legisla-
a Congressional visit. Other key elements of the new advocacy website at
tive and regulatory issues of mutual interest and priority. The Advocacy
IMF include:
Partnership webpage on the IMF Advocacy site outlines the different coali-
tions that the IMF actively participates on issues that impact the myeloma
Cancer Patient Statement
community.
of Principles
The IMF developed the Cancer
Public Policy Web Resources
Patient Statement of Principles to:
In addition to the information myeloma advocates will find on the website,
IMF has also included a list of great on-line resources on health policy and
· Focus and establish the fundamental
advocacy. This list includes links to federal government sites; sites special-
advocacy priorities being addressed
izing in health policy and funding; media, journals, and related sites; and
by the IMF.
additional state and local resources.
· Inform myeloma patients, col-
Advocacy is more than just understanding the issues. The involvement of
league organizations, government
myeloma patients and their caregivers ­ i.e., people like YOU ­ is vital to
officials, the media, and the pub-
the success of IMF's grassroots efforts. It only takes you 5 minutes to start
lic about the IMF's public policy
to get involved and make YOUR voice count. Can one person help bring
concerns.
about change? Absolutely! Engaging myeloma advocates in health policy
· Provide a continuing framework for the IMF to review and report on
advocacy is essential to ensuring that IMF's priorities are addressed by
actions that address current and past policy concerns.
Congress. By using the IMF's resources such as the new Advocacy Action
Center, the Cancer Patient Statement of Principles, and the Advocacy
The Cancer Patient Statement of Principles focuses on the key areas
Toolkit, YOU and other myeloma advocates have the tools necessary to be
of prevention, innovation, access, and early approvals which will be the
effective health policy advocates.
driving force behind the IMF's advocacy efforts with the United States
Congress. The Cancer Patient Statement of Principles can be down-
The IMF is here to help whether you need answers to your questions or
loaded from the Advocacy section of the IMF's website at www.myeloma.
to give you the information and tools you need to become a successful
org. Also, the Principles make excellent "leave behinds" when meeting
myeloma advocate. Should you have any questions or want more infor-
with Members of Congress.
mation on how to help the IMF's new advocacy initiative, please feel
free to contact Christine Murphy at IMF's Government Affairs office in
Advocacy Toolkit
Washington, DC or Arin Assero at IMF's headquarters in North Hollywood,
The IMF Advocacy Toolkit
California. Contact information for Christine and Arin is included below.
has been developed as
mt
an introductory guide-
book that outlines the
Christine Murphy
Arin Assero
role of the myeloma
Director, Government Affairs
Director of Communications
advocate in health pol-
International Myeloma Foundation
and Public Policy
icy advocacy, explains
6534 Marlo Drive
International Myeloma Foundation
the public policy and
Falls Church, Virginia 22042
12650 Riverside Drive, Suite 206
legislative process, and provides
Phone: 703-738-1498
North Hollywood, CA 91607
tips and resources regarding how you can help bring about change.
Fax: 703-349-5879
Phone: 800-452-CURE (2873) x232
The toolkit includes information such as:
Email: cmurphy@myeloma.org
Fax: 818-487-7454
Email: aassero@myeloma.org
1) How a Bill Becomes a Law;
2) Building Relationships with Legislators;
800-452-CURE(2873)
13

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News & Notes
NEWS & NOTES -- continued from page 11
to 5%. Adding a requirement for normalization of the serum-free light
chain ratio to negative immunofixation studies did not negate the need
Help the IMF learn more
for BM studies; 10% with a normal serum-free light chain ratio had BM
about myeloma patients
plasma cells more than or equal to 5%. It was also found that, on achieving
Please help the IMF learn more about myeloma patients by complet-
immunofixation-negative status, patients with less than 5% plasma cells in
ing the latest online Myeloma Patient Survey at http://survey.myeloma.
the BM had improved overall survival compared with those with 5% or
org. You can complete this survey either as a patient or as a caregiver
more BM plasma cells. This information is very helpful in assessing the
on behalf of a patient. All responses will be anonymous. No personal
best ways to implement response criteria within ongoing clinical trials.
identifying information will be gathered.
Study confirms association between ESAs and DVTs or PEs
A study published by the Journal of the National Cancer Institute has
AMEN Scientific Advisor is co-recipient
confirmed that erythropoiesis-stimulating agents (ESAs), such as Procrit®
of a 2009 Nobel Prize
(epoetin alfa) and Aranesp® (darbepoetin alfa), are associated with an
The 2009 Nobel Prize in Chemistry is shared by researchers Ada Yonat,
increased risk of deep vein thrombosis (DVT) or pulmonary embolism
Thomas Steitz, and Venkatraman Ramakrishnan for their work on the
(PE). The association between ESAs and venous thromboembolism was
atomic structure of the ribosome. Dr. Yonat is the first Israeli woman to
observed in previous meta-analysis but the new finding is significant
be awarded a Nobel Prize. She is a professor at the Weizmann Institute
because the data is from community clinical settings, not a short-term
of Science and is a member of the scientific advisory board of AMEN,
study. The new analysis included data from more than 50,000 patients
the Israeli Association of Myeloma Patients. AMEN translates IMF materi-
aged 65 years or older, including those with more advanced cancer or
als into Hebrew and disseminates them to the myeloma community is
high-risk status, who therefore might not have been candidates for clinical
Israel, sets up support groups, and participates in conferences focused on
trials. Results demonstrated that more patients who received an ESA devel-
myeloma education and research. Dr. Yonat is actively involved with the
oped DVT or PE, compared with patients who did not. Overall survival was
organization and has never missed an anniversary meeting of AMEN. The
similar in both groups.
IMF joins AMEN in congratulating Dr. Yonat and her colleagues for their
Novel proteasome inhibitor shows promise
impressive achievement.
A recent study demonstrated that a novel proteasome inhibitor NPI-0052
RSS feed now available
triggers apoptosis in multiple myeloma cells resistant to bortezomib
A new look and a new feature are now available from the same trusted
(Velcade®). In a laboratory setting, combining NPI-0052 and lenalidomide
source of information for the National Cancer Institute (NCI) Center for
(Revlimid®) was shown to induce synergistic anti-myeloma activity in vitro
Cancer Research (CCR) clinical trials at the National Institutes of Health
using myeloma cell lines or patient cells. In animal tumor model studies,
(NIH) in Bethesda, Maryland. You can sign up to receive the RSS infor-
low-dose combination of NPI-0052 and lenalidomide is well tolerated,
mation feed by visiting the http://bethesdatrials.cancer.gov website and
significantly inhibits tumor growth, and prolongs survival. Taken together,
clicking on the orange RSS button near the upper right corner of the
the study provides the preclinical rationale for clinical protocols evaluat-
page. CCR conducts more than 150 clinical trials at the NIH. While on
ing lenalidomide together with NPI-0052 to improve patient outcome in
the Home Page, clicking on the "All cancer types" link will take you to a
myeloma.
page where you can select "Multiple Myeloma" from the list of diseases
CancerCare launches "Door to Door"
to narrow your search for information of interest to members of the
initiative
myeloma community. mt
CancerCare's new "Door to Door" initiative provides grants to individual
patients with multiple myeloma to help with costs of transportation to and
Imagine Moving Forward is the theme of the IMF's
from medical care. The grants of up to $600 per year cover costs such as
myeloma bracelet. Wear one in honor, celebration, or in memory
car fuel, taxi, bus, or train fare. The program is funded in part by a gener-
of a loved one. When people ask you about it, you'll have a per-
ous grant from Millennium: The Takeda Oncology Company.
fect opportunity to spread the word about multiple myeloma.
These bracelets are only $1 each in sets of 10. Youth bracelets are
Founded in 1944, CancerCare is a national non-profit organization with
available, so everybody in
a track record of providing financial assistance to people facing cancer.
your family who has been
In 2008, CancerCare launched a separate organization, the CancerCare
touched by myeloma can
Co-Payment Assistance Foundation, to help cancer patients cover the cost
wear one! Order brace-
of their health insurance co-payments for certain types of treatments.
lets online at our website
www.myeloma.org, or con-
To receive a "Door to Door" transportation grant, patients must meet eli-
tact Suzanne Battaglia at
gibility criteria and complete an application form. The obtain an applica-
SBattaglia@myeloma.org
tion, please visit www.cancercare.org or call 800-813-HOPE (4673).
or 800-452-CURE (2873).
14
www.myeloma.org

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Scientific & Clinical
ASH PRESENTATIONS -- continued from page 6
and kidney problems ­ and improves survival. These are only preliminary
(which can enhance the efficacy of both lenalidomide and bortezomib)
data and it will take us some time to see the full impact of this type of early
are showing efficacy in the treatment-resistant patient population. These
intervention, but obviously it is an exciting new approach.
new drugs are being studied as single agents, with steroids, as well as in
Ongoing active therapy
combinations that include existing drugs such as Velcade and Revlimid.
There are indications that patients will respond to the new drugs even
A study from Antonio Palumbo, MD, at the University of Torino, Italy,
when they no longer respond to other drugs in the same class (abstracts
(abstract #613) showed that "ongoing active therapy" may be a new
#301-306, #429, #430).
option for patients with myeloma. This is the first study to show benefit
from continuing treatment as long as the patient continues to respond,
Novel combinations versus transplant
and it may be a first step toward revising current standards of care. The
A study which caught attention was the randomized study comparing
three-arm study compared patients treated with a standard combination
MPR versus high-dose melphalan with autologous stem cell transplant.
of melphalan-prednisone (MP), to patients treated with melphalan-pred-
These results demonstrated that oral drugs in the MPR arm had a 91%
nisone plus Revlimid (MPR) who remained on ongoing active treatment
progression-free survival at 12 months, identical to that seen in the trans-
with Revlimid (MPR-R). The interim data analysis focusing upon the com-
plant arm of the study. This raises the possibility that at some point novel
parison of MP versus MPR followed by Revlimid maintenance (MPR-R) pre-
combinations could substitute for autologous stem cell transplant in the
sented at ASH demonstrated a 77% overall response rate for MPR-R, and a
myeloma treatment paradigm. Obviously further follow-up and additional
50% reduction in risk of disease progression, versus patients treated with
studies are required to evaluate this type of approach.
limited duration MP. This is the highest risk reduction reported for any
Side effects and predicting outcome
phase III study in this patient group. The presentation concluded, "MPR-R
(ongoing active therapy) can be considered a new standard of treatment
Studies from the IMWG and the IMF gene bank, Bank On A Cure®, sug-
for elderly patients." These interim results are extremely encouraging, and
gest a combination of chromosome abnormalities coupled with stage of
we certainly look forward to further analyses at the next medical meeting
the disease are a better predictor of outcome when evaluated together
as the trial progresses to assess the full value of this new regimen.
than either factor alone (abstract #743). A second study finds specific
genetic changes may be responsible for side effects of treatment such as
Velcade combinations
neuropathy, making it possible to build a data base that anticipates adverse
Of further note, a whole series of studies presented at ASH this
events (abstract #1800). Another interesting presentation showed that
year indicated benefits using a wide range of Velcade combinations.
kidney toxicity, which is important in myeloma, can be reversed with the
These included three-drug combinations such as Velcade-Revlimid-
use of Revlimid and dexamethasone. There were also a number of presen-
dexamethasone, Velcade-cyclophosphamide-dexamethasone, Velcade-
tations on new supportive care drugs, including a new type of drug for
thalidomide-dexamethasone, and the four-drug combination Velcade-
the treatment of bone disease, ACE-011, which has a unique mechanism
Cytoxan®-Revlimid-low-dose dexamethasone ("Evolution" trial). The
of action in enhancing bone repair.
longer-term follow-up of the Velcade-melphalan-prednisone combination
Myeloma setting the stage for new
("VISTA" trial) was also presented and continued to show an overall sur-
treatments for other cancers
vival benefit. We thus now have several very active Velcade combination
protocols. The next step is to sort through these combinations to deter-
What is happening in myeloma research is feeding into developments
mine which will confer the most benefit in the short-term and ultimately
in other areas of hematologic malignancy. Multiple myeloma has been
in terms of long-term survival. An additional aspect discussed was the use
setting the stage for new treatments for a range of cancers, and several
of Velcade in a once weekly schedule, which showed promise in terms
presentations at ASH highlighted this fact. Revlimid, developed for use in
of both equivalent efficacy and reduced neurotoxicity. This approach
myeloma and also approved for use in myelodysplastic syndromes (MDS),
resulted in quite a bit of discussion among attendees.
is now the subject of Phase III studies in a variety of cancers including
diffuse large B-cell lymphoma, chronic lymphocytic leukemia, and pivotal
Pipeline drugs and combinations
studies in mantle cell lymphoma (abstracts #206, #944, #1676, #1679).
We have come a long way in treating myeloma, but a study from the IMF's
Likewise, Velcade is approved in mantle cell lymphoma and is also the sub-
International Myeloma Working Group (IMWG) looks at what happens
ject of Phase II studies in follicular lymphoma (abstracts #933, #1661).
when patients no longer respond to the available treatments. This makes a
The results achieved in myeloma are stimulating broader interest and
powerful case for continuing innovation in treatment development, while
serving as a model in hematologic malignancies overall.
it gives us an important benchmark we can use to evaluate new drugs as
Conclusion
they come along (abstract #2878).
I hope that this brief overview gives you a flavor of what is coming out
Some of the most exciting ASH presentations for the future treatment of
of ASH. While myeloma cannot be cured at present, using new therapies
myeloma are the results of studies of new drugs. Carfilzomib (a new pro-
in combination and in sequence can provide the potential for long-term
teasome inhibitor), pomalidomide (the third generation IMID, after thalid-
remissions with a good quality of life for patients. mt
omide and lenalidomide), elotuzimab (with lenalidamide) and vorinostat
800-452-CURE(2873)
15

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Supportive Care
imf HotLine coordinators answer your Questions
The IMF Hotline 800-452-CURE (2873) is staffed by Paul Hewit , Missy Klepetar, Nancy Baxter, and Debbie Birns.
The phone lines are open Monday through Thursday, 9am to 4pm, and Friday, 9am to 2pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
I have heard that many myeloma
Researchers haven't pinpointed the
patients have been diagnosed with
exact mechanism by which thalido-
hypothyroidism. What is it? Why does
mide and Revlimid affect the thyroid
it occur in myeloma patients? Is it
gland. It may be due to the direct toxic
treatable?
effects of the drugs on the gland, or to
Hypothyroidism occurs when the thyroid
autoimmune damage to the gland due
gland produces insufficient levels of thy-
to deregulations of cellular chemicals
roid hormone. It commonly presents as
called cytokines.
a general slowing in physical and mental
If the patient is responding well to anti-
activity, but often the signs of this disease
myeloma therapy with either thalido-
are subtle and hard to pinpoint. Classic
mide or Revlimid and then develops
signs and symptoms are lethargy, cold
Paul Hewitt, Missy Klepetar, Nancy Baxter, and Debbie Birns
hypothyroidism, he or she may con-
intolerance, puffiness, decreased sweat-
tinue the thalidomide or Revlimid and
ing, constipation, slow heart rate, hoarseness, and coarse skin.
concurrently receive thyroid hormone replacement therapy; symptoms of
There have been several case studies, including one by Badros et al in the
low thyroid hormone will abate as thyroid levels normalize.
American Journal of Medicine (2002;112:412-413) that document the
Obstacles to proper management of the thyroid during thalidomide or
incidence of hypothyroidism in multiple myeloma patients being treated
Revlimid therapy are:
with thalidomide. Badros et al found that 14% of patients on thalidomide
treatment were subclinically hypothyroid (in other words, they had no
1) the assumption (by both patients and physicians) that the symptoms are
outward symptoms, but their laboratory tests showed low thyroid hor-
merely side effects of the drug, and
mone) at three months of therapy. They further suggested that thyroid
2) failure to detect the occurrence of asymptomatic hypothyroidism.
dysfunction might contribute to some of the known side effects of the
drug, such as fatigue, constipation, and bradycardia (slow heart rate).
Some patients diagnosed with myeloma may even have underlying hypo-
thyroidism as a result of pre-existing viral or autoimmune thyroid disease.
More recently, there have been reports that Revlimid® (lenalidomide),
Patients who receive thalidomide or Revlimid should, therefore, have their
which is chemically analogous to thalidomide, also causes hypothyroid-
thyroid function checked both before receiving either of these drugs and
ism. The percentage of patients who developed the problem while receiv-
periodically during treatment. If the patient is found to be hypothyroid,
ing Revlimid in clinical trials was 6.8%.
then further medical review is required to be certain of the cause. mt
wHat do you get at an imf patient & famiLy seminar?
Education · Access to Experts · Camaraderie
Topics Covered
· What's New in Myeloma? · Ask-the-Expert
· Managing Side Effects · How to be a Better Patient
· Frontline Therapy · Transplant · Bone Disease
· Maintenance Therapy · Relapse · Novel Therapies
Go to our website
Regional Community Workshops (RCW)
www.myeloma.org
If you cannot get to a P&F Seminar, consider attending a
and click on the
Regional Community Workshop. These half-day meetings
provide Education, Access to Experts, and Camaraderie.
"Seminars and Meetings"
Registration is free but you must register. It's a great way to
tab for more details, the
learn from myeloma experts, as well as share experiences
most up-to-date faculty, hotels
and gain strength from others in the IMF family. Find more
and registration information.
details about the next RCW near you at our website.
16
www.myeloma.org

---

Nurse Leadership Board
nLB reports on survivorsHip care pLan progress
Page Bertolotti, RN, BSN, OCN
Cedars-Sinai Outpatient Cancer Center
Myeloma Today in conversation with Beth Faiman and Teresa Miceli
Samuel Oschin Comprehensive Cancer Institute
Over the past decade, advances in anti-myeloma therapy have led to better overall survival for patients with
Los Angeles, CA
multiple myeloma. Novel agents have become a staple in the growing array of myeloma treatment options,
Elizabeth Bilotti, RN, MSN, APRN, BC, OCN
providing hope for extended disease-free periods and improved outcomes for patients. As more people are living
John Theurer Cancer Center at HUMC
longer with myeloma, members of the IMF Nurse Leadership Board (NLB) are addressing the evolving needs
Multiple Myeloma Division
of myeloma survivors. The NLB Survivorship Care Plan, which is currently being prepared for publication,
Hackensack, NJ
examines five specific aspects of long-term care for the benefit of patients and the nurses who work with them.
Kathleen Colson, RN, BSN, BS
Patient survivorship care planning allows for optimal management of emergent late-term effects and improved
Dana-Farber Cancer Institute
Boston, MA
quality of life. The leaders of two of the five NLB teams spoke with Myeloma Today about their work. The work
of other three teams will be profiled in upcoming issues.
Deborah Doss, RN, OCN
Dana-Farber Cancer Institute
I am in charge of the
I head the team
Boston, MA
Renal Section of the
working
on
the
Beth Faiman, MSN, APRN-BC, AOCN
Survivorship Care Plan.
Bone Health & Bone
Cleveland Clinic Taussig Cancer Institute
For many people with
Disease Section of
Multiple Myeloma Program
myeloma, cancer and
the Survivorship Care
Cleveland, OH
kidney disease often go
Plan. This section
Charise Gleason, MSN, NP-BC, AOCNP
hand in hand. As many
includes guidelines
Emory University Winship Cancer Institute
as 25% to 50% of myelo-
on bone health main-
Atlanta, Georgia
ma patients are affected
tenance, as well as
Bonnie Jenkins, RN
by kidney disease at
the impact that bone
University of Arkansas Medical Sciences
some point during their
disease has not only
Little Rock, AR
treatment. This might
on acute care but also
Kathy Lilleby, RN
occur at diagnosis or at
on long-term manage-
Fred Hutchinson Cancer Research Center
relapse. In addition, as
ment, pain manage-
Beth Faiman,
Seattle, WA
people are living lon-
Teresa Miceli, RN BSN OCN
ment, quality of life
RN, MSN, CNP, AOCN
Ginger Love, RN, OCN
ger with myeloma, the
Mayo Clinic
and lifestyle issues,
Taussig Cancer Institute
University of Cincinnati Hem/Onc Care
patient population of
Rochester, MN
prevention of further
Cleveland Clinic
Cincinnati, OH
people with renal issues
bone damage and protections of skeletal structure,
Cleveland, OH
is growing.
and other components that contribute to bone health
Patricia A. Mangan, APRN, BC
or bone disease.
Abramson Cancer Center at the
The kidneys of myeloma patients need to be evalu-
University of Pennsylvania
ated and monitored with blood tests. If renal func-
There are many facets of bone physiology and patho-
Philadelphia, PA
tion is not monitored as diligently as it should be,
physiology that my team is examining. The pathology
Emily McCullagh, RN, NP-C, OCN
serious problems might arise. It is important for both
of bone structure has an impact on myeloma patients'
Memorial Sloan-Kettering Cancer Center
patients and nurses to be aware of what medications
diagnosis and prognosis, functional mobility, and
New York, NY
and procedures to avoid and how to approach treat-
pain management. Our group is looking at myeloma
Ann McNeill, RN, MSN, APN-C
ment when renal issues are a concern. For example,
treatment options in view of bone health and bone
The John Theurer Cancer Center at HUMC
patients taking Revlimid® (lenalidomide) may need
disease, including the benefits and cautions regarding
Multiple Myeloma Division
to have their doses adjusted in order to protect their
the use of bisphosphonates. Long-term management
Hackensack, New Jersey
kidneys from possible damage.
of osteonecrosis of the jaw (ONJ) is one of the impor-
tant issues being incorporated into this section of the
Teresa Miceli, RN, BSN
Proper care can prevent future need for dialysis. A
Mayo Clinic ­ Rochester
Survivorship Care Plan.
Rochester, MN
patient's primary care doctor can make sure that
It is important to note that bone involvement is not
the proper kidney surveil ance is taken care of.
Kena C. Miller, RN, MSN, FNP
consistent across the board among patients with
However, once the patient reaches a certain stage of
Roswell Park Cancer Institute
myeloma. Not all patients have bone involvement as a
kidney failure (Stage 3), the Chronic Kidney Disease
Buffalo, NY
result of their disease, and we must reflect on this as
Foundation recommends that the patient be followed
Tiffany Richards, MS, ANP, AOCNP
well. Myeloma patients who do not have underlying
by a nephrologist, and follow-up with blood tests may
MD Anderson Cancer Center
bone-related issues but who are exercising caution
need to be done every three or six months.
Houston, TX
when it comes to activities they enjoyed prior to their
Sandra Rome, RN, MN, AOCN
In Renal Section of the Survivorship Care Plan manu-
myeloma diagnosis, might not need bisphosphonates
Cedars-Sinai Medical Center
script, we recommend that patients drink lots of water
or other precautions. For example, I know a myeloma
Los Angeles, CA
and pay attention to their urination (which should be
patient who enjoyed playing contact sports prior to
regular, with urine that is light in color) and report
diagnosis but ceased his activities for fear of bone frac-
Joseph Tariman,
RN, MN, PhD(c), ARNP-BC, OCN
any changes to their healthcare team. Other health
tures. This patient did not have any bone lesions or
University of Washington
conditions, such as diabetes or high blood pressure,
any underlying bone disease as part of his myeloma,
Seattle, WA
should be monitored and kept under control. We
so his risk of a fracture was no greater than that of
Jeanne Westphal, RN
highly recommend that each patient develop a care
any other person who did not have this disease. It was
Meeker County Memorial Hospital
plan with their providers to monitor kidney function
important for him to hear that playing a sport he had
Litchfield, MN
in order to avoid unnecessary problems.
enjoyed would not put him at greater risk of a fracture
that anyone in the general population. mt
800-452-CURE(2873)
17

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Support Groups
peopLe HeLping peopLe
You are never alone in your bat le against myeloma
Report from the 10th annual
Myeloma Canada hosts successful conference
IMF Support Group Leaders Retreat
Myeloma Canada's fifth annual Patient, Family & Healthcare Professionals
The International Myeloma Foundation's 10th annual Support Group
Conference was held in Calgary on September 11-12. The meeting was
Leaders' Retreat was held on July 17-19 in Dal as, Texas. For a decade,
hosted by the Southern Alberta Multiple Myeloma Support Group in
leaders of myeloma support groups from across North America have gath-
co-operation with the IMF. Faculty included Drs. Donna Reece (Princess
ered for a weekend to share, learn, network, and just have fun. The gener-
Margaret Hospital, Toronto, ON), Morie Gertz (Mayo Clinic, Rochester,
ous sponsors who made this year's retreat possible include the Celgene
MN), Brian Durie (Cedars-Sinai Cancer Centre, Los Angeles, CA), Arthur
Corporation, Proteolix Inc., the Marx Family Foundation, and Millennium
Bradwell (University of Birmingham, UK), and Nizar Bahlis (Tom Baker
Pharmaceuticals.
Cancer Centre).
The general assembly sessions included presentations on myeloma basics,
current approaches to myeloma therapy for both the newly diagnosed and
for relapsed/refractory disease, promis¬ing treatment developments on
the horizon, serum free light chain analysis, and understanding lab data
and test results. Panel discussions and audience Q&A sessions provided
additional insight into several current issues in myeloma management.
In addition, IMF Director Mike Katz shared his insights about how to be
The 2009 retreat was attended by more than 50 group leaders, co-leaders,
a better patient and explained the helpful new Myeloma Manager tool,
and representatives ­ an impressive group that included 17 new myeloma
myeloma nurse Teresa Miceli (Mayo Clinic, Rochester, MN) talked about
support group leaders. The format of the retreat was enhanced by the
managing side effects. The break-out sessions provided participants with
skilled facilitator Alan Kumamoto (Kumamoto Associates), a long-time
an opportunity to attend discussions of specific interest.
friend of the IMF.
New Ohio support group off to a solid start
On Friday, July 17, the leaders were welcomed by the IMF staff before the
In addition to Cincinnati, Cleveland, and Dayton, Ohio now has a new
start of the day's presentations. An update on myeloma clinical trials by Dr.
multiple myeloma support group in the Columbus area. The group's first
Brian G.M. Durie and a presentation about the IMF's advocacy program
meeting took place on September 10, with 11 people in attendance, most
were only two highlights of a very busy day. Before adjourning, Alan gave
of them patients. The support group was formed by Nick Menedis, who
a retreat overview and explained to the participants what was in store for
was diagnosed with myeloma in 2006. "With the assistance of IMF's Robin
the weekend. At cocktails and dinner, everyone enjoyed mingling with old
Tuohy, we mailed invitations to myeloma patients and caregivers within
friends and making new ones.
an hour's drive of our meeting facility. We also posted flyers in local clin-
On Saturday, July 18, the day's program started bright and early with Alan
ics and hospitals," says Nick. "The format of our meetings is focused on
dividing the participants into small groups for an "icebreaker" activity.
encouraging patients to talk about where they are with their disease and to
Each person got to tell "three lies and a truth" about themselves and then
address the questions that arise. Although we use a facilitator, our group
the others had to guess which was which. It was a fun way to start off the
is run by patients and caregivers who want to help each other to become
day that helped everyone feel like they had known each other for longer
better educated about our disease in order to take a more active role in
than just a few hours. The rest of the day was spent discussing group lead-
our treatment decisions. We encourage developing a positive outlook and
ers issues, problem solving, suggestions and recommendations, and roles
maintaining a good attitude. I have taken a very involved stance with my
and responsibilities.
disease and I want to share with others the knowledge and resources that
On Sunday, July 19, retreat participants got right to the nuts and bolts of
have helped me since my diagnosis." The group meets on the third Tuesday
support group strategic and operational planning. Leaders were divided
of each month from 6:30 p.m. to 8:00 p.m. at The Wellness Center, 10330
into three groups according to the geographic regions of their groups.
Sawmill Parkway, Suite 600, Powell, OH 43065. For more information,
Leaders from the Northeast, the South, and the West were challenged to
please email Nick at IMFnick48@aol.com or call him at 614-868-8506.
identify short-term and long-term objectives, as well as to create a plan
NEW support groups invite YOU to join them
that would support the longevity of their groups. At the end of the day,
Eau Claire, Wisconsin: This group's first meeting took place on December
all participants shared experiences and ideas to help ensure each group's
14, 2009. Meetings will continue to take place on the second Monday of
successful future.
each month. For more information, please contact Colleen O'Connor at
By the end of the retreat, each group's representative had a signed "con-
eauclairemyeloma@me.com or 715-835-2303.
tract" as well as a commitment from the IMF support group director for
Richmond, Virginia: This group's first meeting is planned for
their region to help the leader follow through with their plans. The IMF has
January 2010. For more information, please contact Barbara Marx at
already set up a new website designed specifically to enhance group lead-
gobabsgo@aol.com.
ers' sharing of information, documents, and ideas on running a myeloma
support groups. As participants dispersed to travel back to their homes,
York, Pennsylvania: This group's first meeting is planned for
many expressed their enthusiasm for next year's retreat. Now that's a sure
January 2010. For more information, please contact Sharon Berger at
sign of a successful and productive Support Group Leaders' Retreat!
yorkbergers@verizon.net or 717-292-5890. mt
18
www.myeloma.org

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International Affiliates
updates from around tHe gLoBe
Florence, Italy
Paris, France
The second annual Patient & Family Seminar of the Associazione Schirinzi
On October 30, 2009, the IMF held
A. Mario was held on October 21, 2009. The Florence meeting was the first
its seventh Patient & Family Seminar
seminar in Italy since the IMF and the Associazione Schirinzi A. Mario have
in Paris. Once again the event was
formed an alliance to formally work together in the fight against multiple
held in the beautiful Le Maision de
myeloma. Founded in April 2008, the Associazione Schirinzi A. Mario,
La Americ Latine. Meeting Chair
Jean-Luc Harrouseau,
disseminates information about myeloma through its site http://mieloma-
Prof. Jean-Luc Harousseau was
Brian g.M. Durie, Susie Novis,
help.blogspot.com, maintains an active news flow through updated press
joined by an esteemed faculty,
and Thierry Falcon
releases, provides contact information for hematology centers in Italy,
which included Profs. Thierry Facon, Michel Attal, Philippe Moreau, and
organizes events to raise public awareness about myeloma, and holds
Jean Paul Fermand of France, as well as Brian G.M. Durie of the USA.
seminars for patients and their families.
The meeting began with a welcome from Susie Novis and the important
Torino, Italy
message that knowledge is power. By attending educational seminars,
On October 23, 2009, the IMF once again joined
participants have an opportunity to learn about the many treatment
with AIL (the Italian Leukemia/Lymphoma
advances in myeloma available to them. Susie acknowledged the work of
Organization) to hold a Patient & Family Seminar
the Association Francaise des Malades due Myelome Multiple (AF3M), the
in Torino. This was the eighth IMF Patient &
French national myeloma advocacy group, and expressed that the IMF is
Seminar in Italy. Rai TV, the national television
honored to be able to work with them.
network, filmed the meeting, excerpts of which
The seminar's medical presentations were
aired later that day. The meeting was also cov-
informative and comprehensive, and the
ered by the Italian print media.
Prof. Mario Boccadoro
faculty's shared outlook of optimism for
The Torino seminar began with a welcome from the Seminar Chair Prof.
the future was important for the patients in
Mario Boccadoro, who read a letter from the esteemed Italian myeloma
attendance to hear. The IMF filmed the Paris seminar and is making the
doctor Prof. Franco Mandelli, who sent regrets that he could not attend
video available for viewing on the IMF website.. mt
the seminar. Prof. Mandelli expressed his best wishes and his hopes that
the attendees would make the most of the wonderful opportunity to learn
Dr. Kyle Participates in German Meetings
about myeloma from an outstanding faculty assembled for the meeting.
By gregor Brozeit
Before the start of the presentations, IMF President Susie Novis thanked
IMF Scientific Advisory Board (SAB) Chairman Dr. Robert A. Kyle of
the seminar's expert medical faculty ­ including Mario Boccadoro, Brian
the Mayo Clinic headlined a number of patient and doctor meetings in
G.M. Durie, Maria Teresa Petrucci, Sara Bringhen, Federica Cavallo,
Germany in the summer of 2009, reaching hundreds of patients and family
Patrizia Tosi, Louisa Giaccone, Tommaso Caravita, Luca Baldini, and
members and dozens of doctors.
Benedetto Bruno ­ as well as her IMF colleagues in attendance, Executive
Director David Girard and Director of Europe Greg Brozeit.
Dr. Martin Gramatzki of the University of Kiel hosted Dr. Kyle in the first
ever patient education meeting in the extreme north of Germany.
Seminar presentations covered a broad range of topics, including myelo-
Dr. Martin Kropff of the University of Münster hosted 305 audience
ma diagnosis, staging, monitoring, maintenance and supportive care, as
members ­ the largest IMF meeting ever held in Germany ­ in a patient
well as the use of novel therapies in patients who will not be undergoing
meeting on June 13, 2009. In addition to Dr. Kyle, IMF SAB member Dr.
transplantation, treatment options after relapse, promising new drugs in
Hartmut Goldschmidt of the University of Heidelberg also spoke to the
the pipeline, and autologous and mini-allo transplantation. The compre-
audience covering topics including novel therapies, treatment for relapsed
hensive presentations, which made complex information accessible to the
and refractory patients, and clinical trials in Germany.
lay audience, were very well received. During the lively interactive ses-
Leipzig support group leader and founder Albrecht Reissman hosted
sions, it was interesting to note that 32% of patients had been diagnosed
Dr. Kyle, Dr. Dietger Niederwieser of the University of Leipzig and more
as a result of a routine physical exam. Also of note was the keen interest
than 135 patients and family mem-
in neuropathy and fatigue, which the interactive survey revealed to be the
bers on June 15. Dr. Niederwieser
side effects of most concern to the patients in attendance.
also serves as the president of
The seminar showcased the progress made in the field of myeloma in
the European Group for Blood &
recent years, the profound benefits of patient education, and the growing
Marrow Transplantation (EBMT).
spirit of hope for the future that is shared by both the medical and the
At
the
Hamburg-Eppendorf
patient communities. Susie Novis compared the seminar to a movie, which
University Clinic, Dr. Nicolas
Dietger Niederwieser, Robert A.
was fitting as the meeting took place in the auditorium of a movie theater.
Kröger hosted Dr. Kyle in a speech
Kyle, and Albrecht Reissman
"Scene 1: the patient receives the diagnosis and it's a scary movie. Scene
before 50 doctors at the clinic. The final stop on Dr. Kyle's tour was a
2: the movie becomes a drama as the patient begins treatment and life is
presentation for doctors hosted by SAB member Dr. Orhan Sezer of Berlin
turned upside down. Scene 3: the doctors are excellent, the patient has
Charité Hospital, the largest hospital in Germany.
access to effective new therapies, the disease goes into remission ­ it's a
Dr. Kyle's trips to Germany over the past four years have attract-
love story. The closing scene is a look into the future where there is a cure,
ed more than 1700 attendees and over 200 doctors to attend
the patient is fine, and life is good."
educational meetings. mt
800-452-CURE(2873)
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Member Events
imfers raise funds to Benefit myeLoma community
By Suzanne Battaglia
AstheInternationalMyelomaFoundationbeginsits20thyearofservice Julie's healthy lifestyle. "The day was fantastic!" said Mike Smudz. "Many
to the myeloma community, we reflect with pride on our effort to make
company sponsors and individual participants stepped up to support our
the IMF your foundation, in the most inclusive way possible. Working
event and we raised almost $5300 for the IMF's myeloma research program.
together with IMFers across the country and around the world, our Member
Great success!"
Fundraising campaign has blossomed into a network of people like you,
raising money for myeloma research and educational programs.
Jonesboro Days
On July 4th, Darlene
By organizing an event in your community, you are extending myeloma
Jessee and members of
awareness to those who have never heard of it. In addition, it lets them
the Northeast Tennessee
know there is a place to turn for the most up-to-date information and
Multiple Myeloma Support
resources available to the myeloma community. You know you want to do
Group hosted a fundrais-
something in your community to raise funds and public awareness about
er at Jonesboro Days in
myeloma, but deciding on what to do and how to do it can be confusing.
Jonesboro, Tennessee. The
left to right: Judy and Jim Harvilla,
The IMF's FUNdraising program is here to make it as easy as possible for you
event fit in well with the
support group leader Darlene Jessee,
to participate, whether or not you have any experience with fundraising or
group's mission ­ to build
Melisa Jessee, and Darlene
awareness activities.
a social and emotional support network for patients with myeloma, their
FUNdraising is fun (get it?) and easy to do, and brings with it the satisfaction
friends and family, and to spread awareness and disseminate medical infor-
of knowing that YOU have made a difference in many lives. We are grateful
mation within the local community. The event was organized in memory
to all IMFers who contribute their time, imagination, and hard work to ben-
of support group members Doug
efit the myeloma community. Our FUNdraising program provides you with
Bradford and Doc McConnell, the
the tools, assistance, and expertise to make your event a success. Choose
well-known storyteller. Doug's
an established event model or create your own ­ no idea is too large or
wife Darlene and her friends made
too small. Join us in working together toward our common goal... a CURE.
handmade greeting cards to sell
Please contact me, Suzanne Battaglia, at sbattaglia@myeloma.org or 800-
and Doc's wife Guerry donated
452-CURE (2873). I am here to chat with you about any ideas you might
CDs of Doc's stories and enter-
have. Be part of the progress of making miracles happen!
tained guests at "Doc's front porch"
at the International Storytelling
Here is just a sampling of some past and upcoming events...
Center in Jonesboro.
Carolyn Czerkies Charity Golf Outing
Photo above: guerry McConnell and Darlene Jessee accepting a check
On June 6th, the second annual
from Jimmy Neil Smith, Founder and President of the International
Storytelling Center
Carolyn Czerkies Charity Golf
Outing to Benefit the IMF took
Friends Of Richie III
place at the Whitetail Ridge Golf
On September 20th, 2009, Friends Of Richie III:
Clubin Yorkville, Illinois.
A Bloody Good Time benefit concert com-
More than 100 golfers were pres-
bined an evening of music with comic arts and
ent for the shotgun start to the
pop culture at Hollywood's Knitting Factory.
Dave Czerkies, Ed Czerkies,
event. Golfers' donation entitled
"Friends Of Richie" was first organized in 2007
IMF Director Chuck Newman,
them to greens fees, cart, driving
Craig Czerkies, Scott Czerkies
to honor veteran alternative musician Richie
range, lunch, drink tickets, buffet
Hass and to benefit IMF programs and services.
dinner, an open bar at the post-golf gathering, and goodie bags provided by
In 2008, "Friends Of Richie II: A Celebration Of
Richie Hass
Wachovia Securities. Contests included Longest Drive and Closest to the Pin,
A Life," took place in Richie's memory as a fundraiser for the IMF. The
with trophies for tournament champions. All participants, including some
event has now become an annual staple on the Los Angeles music scene,
non-golfers, enjoyed the event and several lucky ticket buyers took home
with an illustrious lineup of musicians Richie worked with during his long
raffle prizes donated by other participants and event sponsors. The golf out-
career. mt
ing was a stunning success and the organizers are already looking forward
to planning the 2010 event!
UPCOMING MEMBER EVENTS
Julie Smudz 5K Fun Run & Family Walk
January 30, 2010 "The Reign" Fashion Show Extravaganza ­
On June 7th, the Julie Smudz
National Constitution Center · Philadelphia, PA ­ To purchase tickets,
5K Fun Run & Family Walk took
please call 609-254-6328 or visit www.christinephillipsonline.com
place at the Delaware State Park in
April 10, 2010 Fishing for a Cure: Bull Roast & Celebration in honor &
Delaware, Ohio. Julie was a strong
memory of Bill Gunther ­ American Legion Post 39 · Bel Air, Maryland
and active woman who fought
To purchase tickets, please contact Bill Gunther 3rd at 410-808-2457 or
hard against myeloma. Her
Billwcg@aol.com
courage and positive spirit
April 24, 2010
have inspired family and
MILES FOR MYELOMA 5K Walk/Run ­ Philadelphia, PA
friends to help raise money to
Co-Sponsored by Philadelphia Multiple Myeloma Networking Group, Central
defeat this disease by organiz-
New Jersey Support Group, and Northern Jersey Support Group
ing the run/walk in honor of
For information, please contact Karen Horan at karen.horan@verizon.net
20
www.myeloma.org

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Patient & Caregiver Experience
Looking forward, Looking Back
An Artist Recal s His Stem Cel Transplant
By RL Schrag
OK, it was not a stay at the spa ­ but in some
me, the constant role of "medical overseer" was
ways that is good news. The only time I went to a
proving incredibly stressful ­ the professor was
spa they blasted me with a water cannon, put hot
making me nuts. I decided that I had absorbed as
rocks on my back, and made me eat tofu-based
much about medicine as I could. It was time to
products garnished with nuts and sprouts. Not the
look for the art.
ideal protocol for someone with multiple myelo-
Among the rules I have set for myself since
ma. But I hadn't been diagnosed yet, what did I
"coming out" as an artist, is to look for art
know? Still, a return to the spa is not high on my
everywhere. We often stumble over beauty, not
list of "gotta do that" as I sit here, 18 months post-
because it is hiding, but because we have grown
transplant, in the relative comfort of remission. I
inattentive to the exquisite in the everyday. We are
would, however, like to revisit my transplant with
inclined to find art only where someone else has
you, particularly if yours is still waiting down the
placed a frame, or erected a pedestal, or thrown
winding road to recovery.
up a spotlight declaring, "Now that, Mildred, that
I came to my transplant as a mature college
there is art. That's what they call `real beauty'."
professor. For thirty years, thousands of fresh or
Balderdash! It's always been one of my favorite
jaded young faces had floated in and out of my
words, and is delightfully applicable here. Beauty
classrooms. All entered as strangers, a few left as lifelong friends. It was,
needs no frame to gild its particular lily. Insight needs no pedestal. As a
and remains, a good life. But I came to my transplant as a relatively young
matter of fact, if you spend enough time at contemporary art galleries you
artist. My willingness to self-identify as an "artist" was only a few years old,
begin to suspect that the very presence of a frame or pedestal indicates
and my first one-man show was even younger. The distinction is important
more Gotcha than Goya. I recently went to a gallery in Florence, Italy,
because as I moved through my trans-
no less, featuring the works of "Italy's
plant, my youthful inner-artist was better
best young artists." Among the displays
To My Senses, Returning After Chemo
company than my older inner-professor.
was a small bottle filled with fingernail
The professor tended to obsess over the
clippings, starkly lit. The card informed
Senses ­ fragile, childlike and skittish,
details: Why are you doing that? What
me that it was reflecting "an angst filled
Remain poised to startle into the dark forest
does that do? He leaned toward criticism
vortex spinning in on it- and him-self
and concern. My inner-artist allowed him-
That still surrounds this welcome patch of sun.
searching for a potential solution, or what
self to be fascinated by those same interac-
They come back slowly, as softly as
we might even call a cure." I must confess,
tions: I'm going to make completely new
I laughed. Surely with tongues so firmly
Pieces of a song that once you knew by heart.
bone marrow? How cool is that! I'm going
planted in cheeks these folks must have
The laptop's keyboard eschews dull symbols
to get a shunt in my chest so you don't
trouble breathing, not? But, I digress. The
have to stick me with a gazillion needles
Needing to be beaten, unwillingly, into words.
point is this: As we sharpen our apprecia-
every day? Neat!
Instead fingers find allies responding gently
tion for the little bits of beauty that lurk
around hospital corners where sterility is
I do not mean to disparage my intellectual
As you draw shy meaning out onto the page.
king, we become attuned to the wonders
identity. We all enter this sci-fi world of
Then taste enchants, swift flashes of pleasure.
that await everywhere in life.
stem cell transplants in various stages
Ephemeral pastels, but pleasure nonetheless.
of ignorance. I was fortunate to have a
How do we find beauty in being a patient?
Birdsong rivals violins, unstudied symphonies
superb medical team attending to me.
By looking. Carefully. By listening.
My own oncologist walked me through
Pour from preening orchestras hidden in the hedge.
Intently. By becoming the individual act-
what to expect, and the folks over at
When pain attacks it is with edges dulled
ing within the environment, not acquiesc-
the University of North Carolina Hospital
ing to the role of "the body acted upon."
By renewed confidence in pending ease.
Bone Marrow Transplant Unit kept me
By recording what we see and hear, by
Sleep floats in on waves of soft comfort,
well informed each step of the way. My
creating from that input, by seeking out
wife and I asked hundreds of questions
Replacing torpid surrender to fatigue.
and expressing the exquisite residing
and got in-depth answers. We all need
It is neither over nor complete; but it is progress
in the unexpected, we find a kind of
to do that, we need to be informed par-
patient beauty.
Every bit as riotous as the gaudy flowers,
ticipants in our treatment ­ otherwise
That paint the greening canvas of this Spring.
we remain willfully ignorant, and that's
just stupid. But I soon realized that, for
­ RL Schrag
Continues on Page 22
800-452-CURE(2873)
21

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RL SCHRAg -- continued from page 21
I heard a story on the radio the other day about a videographer embedded
with troops in Afghanistan. He revealed that life in that chaos was more
tolerable through the lens of a camera. The role of insightful observer was
somehow empowering. He could walk through a firefight with a modicum
of calm if he framed it through optics. I found the same to be true as I
moved through the various stages of my stem cell transplant. I am sure
you can do the same.
The patient information sheets provided by the hospital neglect to list
Put your old cell phone to good use!
some tools vital to patient comfort and empowerment: a camera, a sketch-
Donate your old cell phone and become part of finding the cure.
pad, pencils, pens, markers, and, of course, your laptop or other digital
The IMF has partnered with a cell phone recycling organization
palette of preference. I need to point out that expertise with any of those
that makes a donation for every cell phone we turn in. Current cell
tools is completely optional. They are simply the friends who are taking
phone models are worth up to $20 each. Many older models are
this journey with you. They let you record those moments that eventu-
worth $1 to $10.
ally fade from memory. My blog at http://artisticinterloper.blogspot.com/
shows you how I used my friends to structure the wonder and artistry that
You can help the IMF continue its research and programs. You can
I encountered during my experience. Feel free to hop over there and take
help our environment. You can provide cell phones to underserved
a look. But that was my journey ­ yours awaits you, enjoy it.
communities. And it's as easy as sending us your old cell phones.
For more information about how to turn your old cell phone into
No, that is not a typo. I really did say enjoy it. You are going to do it, right?
a contribution (or how to set up an IMF collection program at your
It is a necessary stage on your journey back to health. You cannot get there
business or school), call Kemo Lee at at 800-452-CURE (2873).
except through this experience. So why fight it or fear it? A transplant is
magical and beautiful in its potential and complexity. I remain in awe of
Or, you can mail your phones direct to the IMF:
the science and compounded genius that made it all possible. I remain
International Myeloma Foundation
profoundly grateful to the dozens of people who walked the transplant
c /o Cell Phones for a Cure
trail with me. I hope I did them justice with my words and images. Now
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421.
you give it a shot. mt
22
www.myeloma.org

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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
©2010,
U.S.A.in
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Printed
2010 IMF Calendar of Events
April 15-17 Southwest Oncology Group (SWOG) meeting ­ San Francisco, CA
July 23-25* IMF Support Group Leaders' Retreat ­ Dal as, TX
April 21
IMF Patient & Family Seminar ­ Paris, FRANCE
Aug 13-14* IMF Patient & Family Seminar ­ Philadelphia, PA
April 27
IMF Clinical Conference ­ Moscow, RUSSIA
Aug 27-28* IMF Patient & Family Seminar ­ Los Angeles, CA
May 13-16 Oncology Nursing Society (ONS) meeting ­ San Diego, CA
Sept 23-24 6th Int'l Serum Free Light Symposium ­ Bath, UK
May 21-22* IMF Patient & Family Seminar ­ Portland, OR
October
IMF Patient & Family Seminar ­ Bologna, ITALy (date TBD)
June 4-8
American Society of Clinical Oncology (ASCO) meeting ­ Chicago, IL
October
IMF Patient & Family Seminar ­ Barcelona, SPAIN (date TBD)
June 8-9
International Myeloma Working Group (IMWG) summit ­ Barcelona, SPAIN
Oct 15-16
IMF Patient & Family Seminar ­ Vienna, AUSTRIA
June 9
Robert A. Kyle Lifetime Achievement Award dinner ­ Barcelona, SPAIN
Oct 21-23
Southwest Oncology Group (SWOG) meeting ­ Chicago, IL
June 10-13 European Hematology Association (EHA) meeting ­ Barcelona, SPAIN
Nov 5-7
Eastern Cooperative Oncology Group (ECOG) meeting ­ Ft. Lauderdale, FL
June 10-13 Eastern Cooperative Oncology Group (ECOG) meeting ­ Washington, DC
Nov 13
4th Annual Comedy Celebration ­ Los Angeles, CA
July 16-17* IMF Patient & Family Seminar ­ Indianapolis, IN
Dec 4-6
American Society of Hematology (ASH) ­ Orlando, FL
Additional events/meetings wil be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or cal 800-452-CURE (2873).
IMF­Latin America, IMF­Japan and IMF­Israel events are not included above.
*Dates subject to change as this issue goes to press. Check the website for dates as they are finalized.
Thank you for your continued support of the IMF. Because of your contributions,
we have been able to maintain the ful range and quality of the programs we offer.

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MYELOMA TODAY
Special Gala Report
On November 7th, 2009, almost
In addition to the stellar show, the IMF welcomed
1,200 guests packed the Wilshire
attendees to enjoy a pre-show cocktail party and silent
Ebell Theatre in Los Angeles for
auction that made a significant impact on the overall
the IMF's 3rd Annual Comedy
success of the event. Items up for bid in the auction
Celebration benefiting the Peter
included guitars signed by Sting and Meat Loaf, boxing
Boyle Memorial Fund. The annual gloves from Mohammed Ali and Sugar Ray Leonard, and
fundraiser once again broke IMF
a fantastic assortment of trips, memorabilia, jewelry, and
fundraising records by bringing in more that were graciously donated for the cause.
nearly $700,000 for our award-winning research program VIP guests were also treated to a post-show champagne
and patient services.
and dessert reception that lasted well into the night.
The Annual Comedy Celebration began when Loraine
The IMF would like to thank our presenting sponsors,
Boyle, IMF Board member and wife of the late actor
Celegene and Millennium, as well as the nearly 30
Peter Boyle, reached out to Susie Novis and Dr. Brian
additional event sponsors for their generous support.
Durie with a profound desire to help make a difference.
MT
Having established the Peter Boyle Memorial Fund, she
invited Peter's colleagues and friends to put on a comedy
show in his honor to raise myeloma awareness and funds
for the IMF.
This year, Amy and Steve Weiss joined the event as
co-chairs. Together with Loraine, they rounded up an
exceptional cast of comedians to come out in support
of the IMF. As in previous years, the event was hosted by
Ray Romano, this time with Jimmy Kimmel, and featured
appearances from Jason Alexander, Brad Garrett,
Doris Roberts, Bob Saget, Fred Willard, and a special
musical performance by Tenacious D with Jack Black
and Kyle Gass.

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Attendees ranged from long-time IMF supporters to guests of the
generous sponsors who made the event a tremendous success. The
energy throughout the evening was one of excitement and laughter as
people from different backgrounds and levels of interaction with the
IMF joined together to raise money for the Peter Boyle Memorial Fund.
(l to r) IMF President Susie Novis, Honorary Co-Chairs
Susie Novis, Loraine and Lucy Boyle,
Louis and Alice Weiss, IMF Chairman Dr. Brian Durie,
Dr. Brian Durie
event Co-Chairs Steven and Amy Weiss
Dr. Brian Durie and Susie Novis
Kimberly Alexander, Dr. Brian Durie,
with Mark and Donna Di Cicila
Elijah Alexander, Susie Novis
Phyllis and Allan Weinstein
Doran Goldstein and Jeff Katz
Susie Novis with Carol Klein, Sarah Klein
with Susan and Michael Katz
and Dr. Brian Durie
Susie Novis and Dr. Brian Durie
(l to r) Susie Novis, Blythe Danner, Loraine Boyle,
with actress Alison Sweeney
Jimmy Kimmel and Dr. Brian Durie
MYELOMA TODAY Special Supplement
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800-452-CURE (2873)

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The IMF's partners in the pharmaceutical industry turned
out in force! We were so pleased to see so many of our
friends for a social occasion in support of myeloma
research. We especially thank our presenting sponsors,
Celgene and Millennium: The Takeda Oncology Company.
Please see the inside-back cover for a full list of all of our
sponsors. Their participation makes the event the huge
success that it is and we thank them all.
Ronny Mosston and the team from
Presenting Sponsor Millennium: the Takeda Oncology Company
with Dr. Brian Durie and Susie Novis
Mark Alles and the team from Presenting Sponsor Celgene
with Susie Novis and Dr. Brian Durie
The team from Proteolix (now Onyx) join the festivities
and visit with Dr. Brian Durie and Susie Novis.
Dr. Brian Durie and Susie Novis join representatives of Aptium Oncology, Inc.
Back row (l to r): Mai Le, Paula Boultbee, Chris Molineaux,
Barbara Frauman; Front row (l to r): Susan Demo, Dr. Brian Durie,
at the VIP Post-Show Champagne Reception.
Susan Monineaux, Susie Novis, Hilary Nouri
(l to r) Dr. Brian Durie, Sarah Jessup, Dr. William Audeh, Paul O'Dea,
Kelli O'Dea, Susie Novis, Peter Jessup
www.myeloma.org
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MYELOMA TODAY Special Supplement

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The sold-out event welcomed more than 1100 people including celebrities and their
fans, entertainment industry executives, myeloma patients, doctors and pharma
representatives to the Wilshire Ebell Theatre, raising almost $700,000 for the IMF's
research program. The show brought tears of laughter to everyone's eyes and enormous
thanks to all the celebrities who donated their time and their humor to the event.
Clockwise from above:
Honorary Co-Chairs Louis and Alice Weiss with
event Co-Chairs Amy and Steven Weiss; Doris
Roberts; Loraine Boyle, Ray Romano, Susie
Novis and Dr. Brian Durie; Ray Romano on the
Red Carpet; The Red Carpet Press Line; Fred
Willard and Dr. Brian Durie; Jason Alexander
with Susie Novis and Dr. Brian Durie
Celebrities signed our Cancer Patient
Clockwise from top-right: Musician Joe Walsh of the Eagles;
Statement of Principles to show their
Elijah and Kimberly Alexander; Actress Maggie Wheeler;
support of the IMF's advocacy efforts.
Actress Jill Zarin; Musician Meat Loaf; Everybody Loves
Clockwise from top-right:
Raymond Actress Alex Meneses
Event Co-Chairs Steven and Amy Weiss;
Actress Jenna Elfman; Musician Adam
Gaynor of Matchbox Twenty; Actor Joe
Manganiello; Actress Alison Sweeney;
Event Co-Chair Loraine Boyle;
Comedian Jimmy Kimmel
MYELOMA TODAY Special Supplement
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800-452-CURE (2873)

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InTErnATIOnAl MyElOMA FOundATIOn
3rd Annual
benefiting the Peter Boyle Memorial Fund
THE SHOW! Thanks to all the comedians and musicians
that made us laugh until we cried!
In the Greenroom with (l to r)
Ray Romano, Bob Saget,
Jimmy Kimmel and Jason Alexander
Host-extraordinaire Ray Romano
Jimmy Kimmel
Doris Roberts
Bob Saget
Jason Alexander
Brad Garret and Ray Romano
Tenacious D with Jack Black and Kyle Gass gave a performance
that was the highlight of a truly hilarious evening
Fred Willard
eedham
esN
eler,CraigRucker,andJam
PhotosinthispublicationbyJohnH
www.myeloma.org
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MYELOMA TODAY Special Supplement

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Excerpts from some of the articles about the event
In her book, "The Year of Magical Thinking", Joan Didion defined for me
formers supporting Peter's memory makes life a little easier for me and my
what it is to lose your husband. Her book helped get me through the hell
family... In life we do have a choice to either deal with what's given us in a
of losing my husband of 29 years, Peter Boyle, who died nearly three years
positive way or else let it undermine the rest of our lives. The first way pays
ago of an incurable blood cancer called myeloma... Although Peter played
tribute to those whom we loved and the second leads to despair.
monsters and villains in many movies, his roots were in improvisational
http://www.huffingtonpost.com/loraine-boyle/fighting-myeloma-with-lau_b_349296.html
comedy. Laughter to fight disease made sense... Seeing these great per-
One Man's Illness Works to Myeloma's Benefit
By Danielle Berrin
As often happens with serious illness, Steve's diagnosis impelled the couple
attention the way Hollywood can." "A lot of times people think celebrities
to take stock of their lives. Both are prominent players in the Hollywood
are self-absorbed, and all I can say in my experience with this benefit is that
community; they realized they had been incredibly fortunate,
I reached out to the heads of studios, heads of networks,
but also considerably insulated from some of life's difficult
heads of agencies, and without fail the support was there,"
realities. "It's really kind of a wake-up call," Steve said about
Amy added. Some of the comedians, Amy said, canceled
his diagnosis. "You dealt with all those people, you enjoyed
paying gigs to appear at the event. "There are opportunities
the perks and all of that -- what meaning does it have? You
where you see the best and worst of people," Amy said. "For
start to realize what is really of value in life. The Los Angeles
me, this was about the best of people."
Hollywood community is kind of a big bubble that separates
http://www.jewishjournal.com/giving/article/one_mans_illness_works_to_
us from a lot of realities. Yet when it comes to raising aware-
myelomas_benefit_20091115/
ness about a cause, few people in the world can attract public
November 10, 2009 | 2:29 pm
Yucks = bucks: Peter Boyle memorial adds $700,000 to myeloma fight
By Adam Tschorn
Although few people may be familiar with myeloma, you'd be hard pressed
husband's comedy connections and former co-workers to stage a comedy
to find anyone in Hollywood who isn't familiar with the late actor Peter Boyle
benefit to help battle the disease by funding the International Myeloma Foun-
-- the larger-than-life actor who cut a comedic swath through popular cul-
dation (IMF)... But perhaps even more impressive than the galaxy of stars
ture that included the tap-dancing monster in "Young Frankenstein" and the
that perform, is the deep bench of American comedy -- and musical -- talent
sitcom curmudgeon Frank Barone on `Everybody Loves Raymond," before
that turn out each year in memory of Boyle and in support of the charity.
succumbing to the blood cancer in 2006. So, for the last three years, his
http://latimesblogs.latimes.com/alltherage/2009/11/third-annual-comedy-celebration-benefiting-peter-boyle-
widow, Loraine, has leveraged the latter to battle the former, calling on her
memorial-fund-raises-70000-for-myeloma-battle.html
Ray Romano Honors his Late Co-star Peter Boyle
"It's great to honor Peter this way and to spend time with
took me under his wing. It's emotional to come here and
the cast members and his family," Romano said. "Fans
remember him this way."
all know him as this curmudgeon, this ornery old man,
http://www.etonline.com/news/2009/11/80810/index.html
but Peter was just the opposite. He was a sweet man who
MYELOMA TODAY Special Supplement
6
800-452-CURE (2873)

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Michael Katz
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International Myeloma Foundation
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Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Printed
The IMF's 3rd Annual Comedy
Celebration featured some of comedy's
biggest names before a sold-out crowd.
The star-studded line up had the guests
rolling in the aisles in hilarity.

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