Myeloma
Today WINTER2011
Volume 8 Number 10
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
Scientific & Clinical News
Profiles in the News
Also in this issue...
Dr. Morton Coleman (Direc-
Barbara Hammack shares her
Dear Reader
tor, Center for Lymphoma and
experience of living with MM
By IMF President Susie Novis . . . . PAGE 3
Myeloma, New York Presby-
for 20+ years. Barb was a
terian ­ Weill Cornell, New
45-year-old single parent of two
IMF's Nurse Leadership Board
York, NY ) has worked in MM
teenagers when she was diag-
Report from NLB VII . . . . . . . . PAGE 8
for the past 45 years. Primarily
nosed in July 1991. She is now
Letters to the IMF
focused on clinical research, Dr. Coleman
grandmother of two boys. She experienced
Members share their thoughts . . . PAGE 9
was an early proponent of high-dose therapy
standard chemotherapy, transplantation, mul-
in MM. In collaboration with colleagues, Dr.
tiple rounds of maintenance protocols, and
News & Notes
Coleman pioneered the BLT-D and BiRD pro-
more than her share of medical issues. But she
Did you know? . . . . . . . . . . .PAGE 10
tocols, and is now studying the ClaPD regimen
has found the resiliency of the human spirit,
International Affiliates
as well as the continuous low-dose therapy
and she's learned "not just how to live with
IMF Europe 2011 recap . . . . . . . PAGE 12
approach. PAGE 4
cancer but how to live, period." PAGE 11
Dr. Noopur Raje
Support Groups
(Direc-
Robin Tuohy has been dealing
tor, Multiple Myeloma
with MM since her husband
We welcome new groups . . . . . . PAGE 13
Program,
Massachusetts
was diagnosed in 2000. In
Spotlight on Advocacy
General Hospital, Boston,
2001, they founded the first
IMF's first Congressional briefing . . PAGE 15
MA) talks about her medical
MM support group in Con-
background and research
necticut, and the Tuohy Family
Investing in the Future
interests in MM. As an example of the evolving
has been part of the IMF family ever since. In
The Hope Society . . . . . . . . . .PAGE 16
use of existing novel therapies, she shares her
2005, Robin came to work for the IMF as a sup-
Member Events
thoughts and experience with subcutaneous
port group assistant. She is now IMF Director
IMFers raise funds to benefit the
administration of Velcade® (bortezomib), an
of Support Groups, and she answers questions
MM community . . . . . . . . . . . PAGE 17
effective part of the anti-MM arsenal that
about the program dedicated to assisting indi-
is currently FDA-approved for intravenous
viduals and communities with local access to
2012 IMF Calendar of Events . . BACK COVER
administration. PAGE 5
support, information, and a sense of collective
identity.
Supportive Care
PAGE 14
The IMF's Nurse Leadership
Board (NLB)
Get your Myeloma Today online!
Survivorship
Care Plan, which examines
Would you like a paperless way to read Myeloma Today? Sign up to
five specific aspects of long-
receive an electronic edition of the IMF newsletter! The online version
term care, has been pub-
makes it easy to share information with friends and family, and is
lished by the Clinical Journal of Oncology
environmentally friendly. To subscribe, please email us at subscriptions@myeloma.org.
Nursing (CJON). In this issue of Myeloma
Today, we offer a summary of NLB recommen-
dations regarding maintaining bone health.
Looking for a LocaL myeLoma support group?
Topics of discussion include pathophysiology,
risk factors, imaging and laboratory assess-
Please visit our website at myeloma.org or call the IMF at 800-452-CURE (2873).
ment, treatment, transplantation, diet, and
pain management. PAGE 7
This issue of Myeloma Today is supported by Binding Site, Celgene Corporation,
Millennium: The Takeda Oncology Company, and Onyx Pharmaceuticals.

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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
Prof. Dr. Mario Boccadoro
Michael S. Katz
Prof. Dr. Heinz Ludwig
John O'Dwyer
Igor Sill
Loraine Boyle
Benson Klein
Dr. Edith Mitchell
Dr. S. Vincent Rajkumar
Allan Weinstein
Mark Di Cicilia
Andrew Kuzneski III
Charles Newman
Matthew Robinson
Amy Weiss
Donna Feig
Dr. Robert A. Kyle
Susie Novis
E. Michael D. Scott
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Raymond Alexanian, USA
Dorotea Fantl, Argentina
Antonio Palumbo, Italy
Kenneth C. Anderson, USA
Jean-Paul Fermand, France
Linda Pilarski, Canada
Michel Attal, France
Rafael Fonseca, USA
Raymond Powles, United Kingdom
Hervé Avet-Loiseau, France
Gösta Gahrton, Sweden
S. Vincent Rajkumar, USA
Dalsu Baris, USA
Morie A. Gertz, USA
Donna Reece, Canada
Bart Barlogie, USA
John Gibson, Australia
Paul Richardson, USA
Régis Bataille, France
Hartmut Goldschmidt, Germany
Angelina Rodríguez Morales, Venezuela
Meral Beksaç, Turkey
Roman Hájek, Czech Republic
David Roodman, USA
William Bensinger, USA
Joy Ho, Australia
Jesús San Miguel, Spain
Leif Bergsagel, USA
Vania Hungria, Brazil
Orhan Sezer, Germany
Joan Bladé, Spain
Sundar Jagannath, USA
Kazayuki Shimizu, Japan
Mario Boccadoro, Italy
Douglas Joshua, Australia
Chaim Shustik, Canada
Michele Cavo, Italy
Michio M. Kawano, Japan
David Siegel, USA
J. Anthony Child, United Kingdom
C. Ola Landgren, USA
Seema Singhal, USA
Raymond L. Comenzo, USA
Henk M. Lokhorst, The Netherlands
Alan Solomon, USA
John Crowley, USA
Sagar Lonial, USA
Pieter Sonneveld, The Netherlands
Franco Dammacco, Italy
Heinz Ludwig, Austria
Andrew Spencer, Australia
Faith Davies, United Kingdom
Jayesh Mehta, USA
A. Keith Stewart, USA
Meletios A. Dimopoulos, Greece
Håkan Mellstedt, Sweden
Guido J. Tricot, USA
Johannes Drach, Austria
GiamPaolo Merlini, Italy
Benjamin Van Camp, Belgium
Brian G.M. Durie, USA
Gareth Morgan, United Kingdom
Brian Van Ness, USA
Hermann Einsele, Germany
Nikhil Munshi, USA
David Vesole, USA
Thierry Facon, France
Amara Nouel, Venezuela
Jan Westin, Sweden
IMF Staff
Chief Financial Officer
Senior Global Analyst
Senior Vice President,
Vice President,
Vice President,
Jennifer Scarne
Dan Navid
Strategic Planning
Development
Clinical Education & Research Initiatives
( jscarne@myeloma.org)
(dnavid@myeloma.org)
Diane Moran
Heather Cooper Ortner
Lisa Paik
(dmoran@myeloma.org)
(hortner@myeloma.org)
(lpaik@myeloma.org)
Database & Inventory Control
Regional Director,
Regional Director,
Data Specialist,
Betty Arevalo
Support Groups
Support Groups
Office Manager
(marevalo@myeloma.org)
Regional Community Workshops
Andrew Lebkuecher
Selma Plascencia
Director of Advocacy
Kelly Cox
(alebkuecher@myeloma.org)
(splascencia@myeloma.org)
Arin Assero
(kcox@myeloma.org)
Specialty Member
Webmaster
(aassero@myeloma.org)
Hotline Coordinator
Services Coordinator
Abbie Rich
Director of Member Events
Paul Hewitt
Kemo Lee
(arich@myeloma.org)
Suzanne Battaglia
(phewitt@myeloma.org)
(klee@myeloma.org)
Major Gifts Officer
(sbattaglia@myeloma.org)
Meeting & Event Services
Director of Annual Giving
James Ross
Hotline Coordinator
Spencer Howard
and Social Media
( jross@myeloma.org)
Debbie Birns
(SHoward@SignatureEventsLA.com)
Randi Lovett
IT Systems Admin
(dbirns@myeloma.org)
Publications Editor
(rlovett@myeloma.org)
Thomas Shin
Regional Director, Support Groups
Marya Kazakova
Assistant to Development
(tshin@myeloma.org)
Joanie Borbely
(mkazakova@myeloma.org)
& Medical Affairs Depts
Director of Support Groups
( jborbely@myeloma.org)
Hotline Coordinator
Danielle Loi
Robin Tuohy
(dloi@myeloma.org)
European Programs
Missy Klepetar
(tuohy@snet.net)
Gregor Brozeit
(mklepetar@myeloma.org)
Publication Design
Hotline Coordinator
(greg.brozeit@sbcglobal.net)
Accountant
Jim Needham
Judy Webb
( jneedham@myeloma.org)
Grassroots Liaison
Phil Lange
( jwebb@myeloma.org)
Meghan Buzby
(plange@myeloma.org)
(mbuzby@myeloma.org)
2
myeloma.org

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A Message from the President
Dear Reader,
Earlier this month, I was having dinner at a favorite local restaurant
world-renowned myeloma experts,
when I struck up a conversation with the couple at the next table.
but also from one another by sharing
After a while, the man asked what line of work I was in. When I told
experiences and emotional support.
him that I am the president of a non-profit cancer foundation, he
I strongly encourage you to attend a
asked "Oh, what type of cancer?" I replied "Something you've probably
seminar in 2012.
never heard of ­ multiple myeloma" and he answered, "Myeloma? My
The 2012 IMF Patient & Family Semi-
mother has that."
nars will be held in Boca Raton,
A few weeks earlier, a woman walked into our headquarters in
Seattle, Boston, and Los Angeles. To
Los Angeles. She had brought her elderly father to meet with an attor-
register or obtain more information
ney who has an office in the same building when she saw a sign that
about these seminars or our other
said International Myeloma Foundation. "My mother passed away
programs and services, please visit myeloma.org or call the IMF.
from myeloma 22 years ago," she told us. "At that time, there were no
As we move into a new year, we continue to work on making great
resources available to us, and now there is this wonderful organiza-
strides on the path toward finding a cure for myeloma. In the
tion ensuring that patients and family members get the information
meantime, the IMF is here to help every patient, caregiver, and family
they need."
member, no matter where they live. We are always here for you ­ in
For a cancer that is considered rare, it is amazing how many people's
person, on the web, and via our Hotline at 800-452-CURE (2873).
lives have been touched by it. The IMF was founded to ensure that no
On behalf of everyone at the IMF, I wish you and your family a happy
myeloma patient would ever have to face this disease alone. For these
holiday season and a brighter new year.
two people, learning about the IMF has given them new hope that
Warmly,
something is being done to help myeloma patients fight the disease.
With early diagnosis being a key factor in survival rates, we must con-
tinue to raise awareness of myeloma and its symptoms so both patients
Susie Novis, President
and doctors know what to look for. That is why the IMF launched 10
Steps to Better CareTM, a unique tool for diagnostic and treatment
information. 10 Steps to Better CareTM is available on our website at
10steps.myeloma.org. The "steps" are:
What do you get at an
1. Know what you're dealing with. Get the correct diagnosis.
IMF Patient & Family Seminar?
2. Tests you really need.
·Education
3. Initial treatment options.
Get up-to-date, vital information.
4. Supportive care and how to get it.
·Access to Experts
5. Transplant: Do you need one?
Get one-on-one access to the experts with time to ask questions
about your treatment options.
6. Response assessment.
·Camaraderie
7. Consolidation and/or maintenance.
Share your experiences and gain strength from others in the IMF family.
8. Monitoring without mystery.
Typical Friday Topics
9. Relapse: Do you need a change in treatment?
· What's New in Myeloma? · Ask-the-Expert
10. New Trials: How to find them.
· Managing Side Effects · How to be a Better Patient
Typical Saturday Topics
Linked to each "step" are supporting articles and videos that will fur-
· Frontline Therapy · Transplant · Maintenance Therapy
ther enhance the depth of your understanding of the subject matter.
· Relapse · Bone Disease · Novel Therapies
10 Steps to Better CareTM is just one of myriad programs that the IMF
offers to help you.
Upcoming Patient & Family Seminars
Since 1993, our flagship educational program ­ the IMF Patient &
Boca Raton, FL ­ February 3-4, 2012
Seattle, WA ­ March 23-24, 2012
Family Seminar ­ has reached tens of thousands of people around the
Los Angeles, CA ­ August 10-11, 2012
world. This two-day conference, held four times each year, not only
provides myeloma patients and their caregivers with the latest infor-
Go to our websitemyeloma.org and click on the
mation about myeloma treatment and research, it also brings much
"Seminars and Meetings" tab for the most up-to-date faculty,
needed hope and empowerment. Patients not only get to learn from
and registration information.
This free issue of Myeloma Today© (Volume 8, Number 10) is dated December 15, 2011. Myeloma Today© is a quarterly-published (Spring, Summer, Fall, and Winter)
publication of the International Myeloma Foundation, located at 12650 Riverside Drive, Suite 206, North Hollywood, CA 91607 USA.
800-452-CURE(2873)
3

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Scientific & Clinical
Dr. morton coLeman shares an overview of his 45-year career in mm
What is your background in medicine?
The Ig count dropped dramatically in all but one
My family always wished for me to become a physician.
patient ­ almost a 100% response! We published a
During my college years, I considered becoming a chem-
paper on the BLT-D (Biaxin®, low-dose thalidomide,
ist but, virtually on his deathbed, my father said, "If you
dexamethasone) regimen in 2002 in Leukemia & Lym-
want to be a chemist, become a chemist, but first I wish
phoma, and those original observations have been sus-
you to be a doctor." My father died of lung cancer, which
tained in the years since. These observations included
kindled my interest in oncology. The summer between my
increased thrombosis with immunomodulatory drugs
first and second year at the Medical College of Virginia, a
(IMiDs), the prevention of this phenomenon with
Dr. Arnold F. Strauss hired me, a 19-year-old student, to
low-dose aspirin, and the use of weekly (low-dose)
do autopsies. At that time, I enjoyed physiology so much
dexamethasone, which has since become the gold
that I considered delaying medical school and getting
standard way to administer steroids in MM.
a PhD, but Dr. Strauss told me, "Mort, first become a
Two of my closest associates at Cornell, Drs. Ruben
physician." After my internship and first-year residency at
Niesvizky and Mark Tomer, collaborate on all MM
Grady Memorial Hospital ­ Emory University, I served in
projects. When lenalidomide (Revlimid®) came out,
the Navy during the Vietnam War, partly at sea and partly
we decided to substitute it for thalidomide because
at the National Naval Medical Center in Bethesda, MD. In
Morton Coleman, MD
Director, Center for Lymphoma
we wanted to avoid the neurologic complications of
1967, for my second-year residency, I went to what was
and Myeloma
thalidomide in BLT-D. The results with the BiRD
then New York Hospital-Cornell. Almost 45 years later, NewYork-Presbyterian/Weill Cornell (Biaxin®, Revlimid®, dexamethasone) protocol were
I am still here.
New York, NY
astounding, and we still have patients on this regimen
Early in my career, my interest in oncology became focused on hema-
seven years later. In the process, we determined that the toxicity of
tological malignancies. I am now the director of the Center for Lym-
lenalidomide is enhanced by renal insufficiency. We also did a case-by-case
phoma and Myeloma at New York Presbyterian Hospital and clinical
comparison of BiRD against the two-drug combination (without Biaxin®).
professor of medicine at Weill Cornell Medical College. It has been
The 3-drug combination was found clearly superior. Hopefully, just as the
a very rewarding venue and career. If I had to do it all over again,
low-dose dexamethasone approach has finally taken hold, Biaxin® will
I certainly would.
eventually receive recognition as an effective augmenting anti-MM agent.
What contributions have you made in hematology-oncology?
What are your research plans for the near future?
One of my earliest achievement was in originating what has remained for
I am concerned that some clinical studies are simply combining many
decades the standard chemotherapy for Hodgkin's lymphoma. In multiple
drugs together, which may necessitate the attenuation of doses in order
myeloma (MM), my first project looked at the interference of MM proteins
to reduce toxicity. Instead, our approach is to use a "one-two" punch. For
in coagulation. This laboratory research segued to my interest in MM.
instance, we use carfilzomib plus dexamethasone until we get a maximum
response, then consolidate immediately with the BiRD regimen. This
In the early 1970s, Dr. John Harley developed Triple Therapy for MM,
approach uses the concepts of the Norton-Simon and the Goldie-Coldman
which combined three alkylating agents: BCNU, melphalan (Alkeran®),
hypotheses to design a more effective, less toxic regimen. In the lab, we
and cyclophosphamide (Cytoxan®). Cancer and Leukemia Group B
are working closely with Dr. Selina Chen-Kiang, who is developing agents
(CLGB), of which I was a committee member, did a ramdonized study.
to arrest cell cycling, allowing synchronization for a more successful
When I reviewed the data, those MM patients who had greater toxicity also
therapeutic regimen. We have now extended our observation with the
had better responses, which prompted my interest in dose intensity.
BiRD regimen, substituting pomalidomide for lenalidomide. The results
At a meeting of the International Society of Hematology in Jerusalem,
with the ClaPD (clarithromycin, pomalidomide, dexamethasone) protocol
there was a presentation about a patient with MM who had been
are extremely promising in heavily pre-treated patients.
accidently over-treated with 10 times the normal dose of intravenous
Please tell us about the annual congress you host in New York City.
Alkeran® and went into complete remission. Not long thereafter, I learned
about a patient in the US who went into complete remission also after
In 2000, we at Cornell inaugurated the Lymphoma & Myeloma Interna-
being over-treated with Alkeran®. That spurred me to write a paper on
tional Congress, which I have had the privilege of chairing since inception.
using "super high-dose" therapy in MM. Even after multiple revisions, the
The Congress has grown to nearly 1,000 attendees from over 40 countries,
Journal of Clinical Oncology ultimately rejected it because they thought
becoming the premier forum on the latest advances in lymphoma,
it was too radical. As my paper was being revised and reviewed, Dr. Tim
myeloma, and related disorders in the US. At the 2011 Congress, we
McElwain, who ultimately became a close friend, published a paper on
honored Dr. Durie with the Joseph Michaeli Award for his contributions
high-dose therapy with Alkeran®, which marked the initiation of "ultra
to the field of MM. IMF President Susie Novis is also a past recipient of the
high-dose" chemotherapy and autologous transplantation in MM.
award for leading the way in pro bono activities on behalf of MM patients.
A few years ago at a medical meeting in San Diego, Dr. Brian Durie pre-
From your perspective, how would you assess the anticipated
sented a paper on the use of clarithromycin (Biaxin®) in MM. Although
progress in MM in the near future?
skeptical, I tried Biaxin® in refractory MM patients who were receiv-
Our understanding of the basic biology of MM has increased exponentially
ing high-dose dexamethasone, and their immunoglobulin (Ig) further
over the years. The better our knowledge of how the MM cell survives, the
responded. Around that time, Dr. Bart Barlogie published a paper about
more capable we become in attacking disease. One day, I am sure we shall
the use of thalidomide in MM, so I added thalidomide to the combination.
cure MM. But I believe that making MM a controllable chronic condition
Continues on Page 6
4
myeloma.org

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Scientific & Clinical
Dr. noopur raje Discusses her research interests in mm
Please tell us about your medical background.
Can you tell us about the SQ bortezomib clinical
I received my medical degree from B.J. Medical
experience you have had with the MM patients you
College, Pune University, India. I trained in internal
are treating?
medicine at Massachusetts General Hospital (MGH)
In the United States, bortezomib is currently approved
and completed a fellowship in hematology and medi-
for the treatment of MM via IV administration. It has
cal oncology at the Dana-Farber Cancer Institute in
been a very effective part of the anti-MM arsenal for
Boston, MA. Currently, I hold a faculty appointment
many patients, but data show that approximately a
at MGH and am an associate professor of medicine at
third of MM patients being treated with IV bortezomib
Harvard Medical School. At MGH, I am the director
experience PN, which can cause pain, numbness, and/or
of the Multiple Myeloma Program, Medical Oncol-
tingling in the extremities. To manage side effects, the
ogy. As a hematologist/oncologist, my primary focus
dosage or frequency of administration can be decreased.
is in multiple myeloma (MM), both as a clinician
Once weekly instead of twice weekly administration of
and researcher.
IV bortezomib has become common since a clinical trial
demonstrated the safety and efficacy of this approach,
What are your research interests?
which significantly reduces side effects, including PN.
We pursue laboratory and clinical research in MM
with the goal of translating these efforts to the
In the SQ route of administration for bortezomib, it
improvement of patients' lives. My research focuses
is injected into the fat below the skin. This is not yet
Noopur Raje, MD
on understanding the biology of MM, the biology of
Director, Multiple Myeloma Program,
approved by the US Food and Drug Administration
Medical Oncology
(FDA), but an application has been submitted. Some
bone disease in MM, tumor microenvironment and
Massachusetts General Hospital
cancer centers are now using the SQ method, and
its role in MM pathogenesis, the development of
Boston, MA
patients can inquire if their treatment facility offers it.
novel therapeutics, as well as identifying and validat-
My patients who are on SQ bortezomib are doing very well. No patient
ing novel targets.
has had significant issues with it.
I have been involved with investigating the role of B-cell activating factor
For a patient, SQ administration makes bortezomib delivery more quick
(BAFF) in MM using a neutralizing antibody and cyclin-dependent kinase
and comfortable. But convenience is not the only factor. Importantly, the
inhibitors. All of these clinical trials are backed by translational research
SQ administration method makes it possible for us to use bortezomib
endpoints informed by our preclinical studies with the view to validating
in individuals with pre-existing PN who otherwise respond well to the
our data.
therapy. In addition, with SQ administration, patients may tolerate
Despite the significant progress that has been made in the treatment of
bortezomib longer, which might improve the depth and duration of their
MM in recent years, substantial challenges remain. This is especially true
response to therapy.
for our high-risk MM patients, and for those with advanced drug-resistant
Unfortunately, insurance reimbursement remains an issue because SQ
MM. To address these challenges, we must identify novel classes of anti-
bortezomib is not yet FDA-approved. Of course, once the SQ route is
MM agents and incorporate them into safe and effective regimens. We
approved, the next step would be to determine if combining weekly and
must also develop more efficient algorithms to help us select the most
SQ bortezomib administration can maintain efficacy while further reduc-
appropriate therapeutic options for each individual patient.
ing side effects. I would also be cautious about using SQ bortezomib in
Is subcutaneous administration of Velcade® an example of the
combination approaches as data to that effect are lacking.
evolving use of existing novel therapies?
Thank you. Any closing comments?
The standard administration of bortezomib (Velcade®) is intravenous
The outlook for patients with MM has improved significantly with the
(IV) injection, but subcutaneous (SQ) administration is now being
use of the immunomodulatory drugs thalidomide and lenalidomide
studied as an alternative in MM. Prof. Philippe Moreau and colleague
(Revlimid®), and the proteasome inhibitor bortezomib. The progress
have published data from a randomized, Phase III, non-inferiority study
continues, with advances being made in the discovery and development
of SQ versus IV administration of bortezomib in patients with relapsed
of new drug classes, the introduction of next-generation agents, and our
MM. They compared the efficacy and safety at the standard dose (1.3 mg/
ability to effectively treat MM with existing novel agents while reducing
m2) and twice per week schedule. No significant differences were found
the potential for side effects and being watchful of the patients' quality of
in time-to-progression (TTP) and 1-year overall survival (OS), and side
life. Overall, we are looking at the very realistic goals of further improving
effects ­ peripheral neuropathy (PN) in particular ­ were significantly
outcomes and expanding treatment options for patients with MM.
less common with SQ than with IV administration. The data demonstrate
that SQ bortezomib is feasible, resulting in equivalent bortezomib plasma
Editor's Note: Dr. Raje is a member of the American Medical Association
exposure and similar efficacy, but with an improved systemic safety profile
(AMA), America Society of Hematology (ASH), American Society of
Clinical Oncology (ASCO), and American Association of Cancer Research
compared to standard IV administration. The data support the use of SQ
(AACR). She is also an ad hoc reviewer for several journals, including
bortezomib administration in the clinical setting where the safety and
Blood, Clinical Cancer Research, Leukemia, and the American Journal of
efficacy of IV bortezomib have been established.
Hematology. Dr. Raje is the recipient of several awards and has published
extensively in the field of MM research. mt
800-452-CURE(2873)
5

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Scientific & Clinical
maintaining bone heaLth
Multiple myeloma (MM) patients are living longer due to therapeutic
Assessment
options not available a decade ago. To address the evolving needs of MM
The severity of bone disease and number of lesions at the time of diagnosis
patients and the nurses who work with them, the IMF's Nurse Leadership
help classify patients considered high-risk. The "Durie/Salmon PLUS"
Board (NLB) has developed a Survivorship Care Plan that examines specific
staging system integrates the quantification of bone lesions by magnetic
aspects of long-term care. The full manuscript has been published by the
resonance imaging (MRI) and positron-emission tomography (PET) into a
Clinical Journal of Oncology Nursing® (CJON) in August 2011 as supple-
new generation of anatomic and functional MM staging to better define the
ment to Volume 15, Number 4.
treatment plan for patients newly diagnosed with early disease.
The IMF-NLB recommendations provide an overview rather than an in-
Imaging is an important tool for diagnosis and monitoring of MM bone
depth examination of possible issues. In this edition of Myeloma Today,
disease. Bone scans are not the technique of choice because the degree
we offer a condensed version of the CJON manuscript chapter prepared by
of bone disease may be underestimated. A complete skeletal survey, the
Teresa Miceli, Kathleen Colson, Beth Faiman, Kena Miller, Joseph Tariman,
standard method of imaging in MM patients, detects fractures, tumors,
and other members of the IMF-NLB.
or degenerative changes in the bone. Metastatic bone survey, the gold
Bone Health
standard for assessing MM bone disease, is able to identify the lytic disease
Up to 90% of MM patients develop osteolytic bone lesions at some time
where at least 30% of the trabecular bone has been destroyed, however this
in the course of their disease. Clinical implications include fractures, pain,
technique does not demonstrate response to therapy. These limitations
spinal cord compression, hypercalcemia, and renal dysfunction. Manage-
have led to the use of CT, PET, and MRI, which can be helpful in discerning
ment of bone disease in MM is an integral part of the treatment paradigm.
suspicious lesions or areas of focal bone destruction. MRI may reveal the
presence and progression of disease and provide prognostic information
Pathologic fractures and other skeletal events can lead to poor circula-
for patients with nonsecretory or oligosecretory MM. PET scans are useful
tion, blood clots, muscle wasting, compromised performance status, and
in detecting bone disease, marrow infiltration, and extramedullary disease.
decreased survival. Clinicians can identify patients at risk and provide
recommendations to reduce and manage bone complications. Preventive
Laboratory tests to assess bone include calcium, vitamin D, fractionated
and therapeutic interventions include diagnostic monitoring, dietary coun-
alkaline phosphatase, and creatinine. A variety of markers are used to
seling, medication administration, and surgical procedures.
monitor bone resorption in MM; these markers can also predict the devel-
opment of new skeletal events. Endocrine evaluation that includes thyroid,
Pathophysiology
parathyroid, and testosterone levels may be indicated.
Normal bone formation is initiated by osteoblasts, and bone resorption
Risk Factors
is initiated by osteoclasts. Osteoprotegerin is a cytokine that inhibits
MM therapies may adversely affect bones. Plus, MM patients can have
production of osteoclasts, maintaining the balance between bone resorp-
comorbid conditions that may place them at risk for poor bone health, and
tion and formation. Osteolytic lesions found with MM are caused by rapid
pharmacotherapy for those conditions may contribute to osteoporosis and
bone turnover, which occurs as a result of increased resorption that is not
risk of fracture.
accompanied by a comparable increase in bone formation.
The use of glucocorticoids (dexamethasone or prednisone) is a staple in
Bone destruction in MM is believed to result from an interaction of bone
MM therapy. Steroids kill MM cells directly and may enhance the efficacy of
marrow stromal cells and MM tumor cells within the microenvironment
other drugs when used in combination. However, steroid use may inhibit
of the bone marrow. Bone pain and the incidence of pathologic fracture
or kill osteoblasts, stimulating bone resorption, inhibiting calcium absorp-
are high among MM patients as a result of osteolytic bone lesions and
tion, and increasing calcium excretion. Steroid use is also associated with
bone turnover related to excess cytokine levels. Common locations of
avascular necrosis or osteonecrosis.
fracture include the vertebral bodies, flat and long bones, the extremities,
and pelvis.
Osteoporosis risk factors include gender, age, family history, small or
thin frame, and low levels of sex hormones. Potentially modifiable causes
(Continues on next Page)
DR. MORTON COLEMAN -- continued from page 4
is no less an achievement. Survival of MM patients used to be measured
So the outlook is good for patients with MM?
in months to years; now hopefully it can be measured in years to decades!
In MM, almost all patients will have a good response to therapy whether
MM doesn't have to stop an individual from living a full and rich life. Some
they are newly diagnosed or pretreated, and the median survival will
diseases, while not curable, are treatable. For example, while we cure the
almost certainly continue to increase. But there is a small segment of the
most aggressive high-grade forms of lymphoma, we do not cure low-grade
MM patient population who are poor responders, and they are our main
lymphomas, yet those patients live long and rewarding lives.
challenge. But for the vast majority of MM patients, the outlook is much
better than in years past. Our increasing understanding of the molecular
We are now applying the concept for metronomic (continuous low-dose)
basis of cancer will continue to enable us to better tailor individualized
therapy, which we originally developed in lymphoma and leukemia, to
therapy. I expect even more significant progress to be made in MM in the
MM. For example, we daily alternate thalidomide with lenalidomide,
next five years.
thereby reducing the potential for hematologic and neurologic toxicities.
Chronic lymphocytic leukemia (CLL) patients are doing remarkably well
Editor's Note: Dr. Coleman has served as member or chairman of numer-
on metronomic therapy, and it might work equally well in maintenance
ous medical and scientific organizations and committees and has received
many awards and recognitions. A named professorship at Weill Cornell
therapy for MM.
Medical College has been established in his honor. mt
6
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Supportive Care
include nutritional deficits, chronic medical conditions, inactivity, smoking,
suggests that using pamidronate or zoledronic acid decreases the risk of
alcohol abuse, and certain medications.
skeletal-related events, but the optimal duration of therapy is unknown.
Renal disease is a common complication in MM. Patients with renal
Side effects include flu-like symptoms, a small but increased risk of osteo-
osteodystrophy experience increased risk of fractures and resultant joint
necrosis of the jaw (ONJ), and renal impairment.
and bone pain. Kidneys have a significant role in bone mass by maintaining
Radiation to affected areas of bone is a useful modality for some MM
calcium and phosphorus levels in the blood.
patients, providing local pain and tumor control as well as preventing or
Gonadal failure can be a natural part of aging or therapy-related, and can
treating fractures. Radiation may be curative for solitary bone plasmacy-
affect both men and women. Postmenopausal women are at higher risk of
tomas. The use of radiation should be limited as it may cause permanent
osteoporosis and fractures, because the loss of estrogen results in a higher
bone marrow damage and compromise organ function within the treatment
rate of bone loss.
areas.
Diabetes (Types 1 and 2) carries an increased risk of fracture. The
Surgical procedures can stabilize bone to control pain and prevent or
mechanism for bone loss in diabetes is not well understood. MM patients
treat fractures. Two surgical techniques specific to the spine are Kyphon®
undergoing treatment with high-dose steroids have an increased risk of
Balloon Kyphoplasty and percutaneous vertebroplasty. Both are minimally
developing steroid-induced diabetes.
invasive and may provide immediate pain relief in some patients, along with
improvements in functional stability and spine stabilization.
Cardiovascular disease and osteoporosis association in men is not well
understood and may be a culmination of comorbid conditions that place a
Emerging treatments include the human monoclonal antibody deno-
person at risk for both conditions.
sumab, which is approved for use in preventing skeletal-related events
Major depressive disorders occur more frequently in those diagnosed
in solid tumors and indicated for the management of postmenopausal
with cancer. The association of depression, osteoporosis, and risk of frac-
osteoporosis. Not approved in the US for MM, denosumab is currently in
ture is unclear. Physiologically, hormone levels that promote osteoclastic
clinical trials, as are Dickkopf-related protein 1 (DKK1) inhibitors.
function and decrease osteoblastic function are elevated in those who have
Diet
major depressive disorders. Secondary risk factors may play the greatest
Patients are encouraged to eat well-balanced diets. Most nutritional supple-
role because an association exists between depression and unhealthy
ments are safe in moderation; however, based on preclinical evidence,
behaviors. In addition, antidepressants have been implicated in increased
vitamin C interferes with the ability of bortezomib to kill human cancer cell
risk of fractures.
lines in culture. Alpha lipoic acid, often recommended for peripheral neu-
Bone Marrow Transplantation
ropathy, has been shown to interfere with anti-MM effects of bortezomib.
Bone loss is common following autologous and allogeneic bone marrow
Preclinical research demonstrated tumor cell death caused by bortezomib
transplantation. Few long-term studies are available, and the mechanism is
may be negated by the use of green tea. Although no clinical evidence exists,
not completely understood. One small study of 29 patients who underwent
the IMF-NLB recommends avoidance of vitamin C, alpha lipoic acid, and
autologous bone marrow or peripheral blood transplantation following
green tea on the day of bortezomib therapy.
high-dose chemotherapy did not have significant osteopenia despite high-
Vitamin D and calcium are required for bone health. Supplementation is
dose steroids, prolonged inactivity, and decreased estrogen levels. This
advised for all patients with osteopenia or osteoporosis, particularly if they
was a follow-up study of patients five years post-transplantation, so these
are receiving bisphosphonates. In older adults, maximizing serum vitamin
unexpected results may be due to recovery of endocrine function during
D levels is associated with improved muscle strength, resulting in a 20%
that time. Further studies are needed before making any conclusions.
decreased risk of fracture.
Treatment
Evidence shows that increased levels of vitamin K reduce the risk of fracture.
Treatment of active MM with effective therapies helps manage MM-related
Phytoestrogens, found naturally in plant-based products such as soy, may
bone disease. For patients with bone involvement but no bone-related
act as a safe hormone replacement therapy for postmenopausal women.
pain, systemic therapy is often the primary treatment choice. Adjuvant
Smoking and use of alcohol (>2 drinks/day) are both associated with
therapies include localized radiation, surgical interventions, and the use of
impaired absorption of calcium in the intestine. Consumption of excess
agents that inhibit bone resorption. For each patient, all factors should be
or insufficient amounts of protein, vitamin A, and phosphorus may have
considered when developing an individualized treatment plan.
positive or negative effects on bone health, depending on their renal effects.
Novel agents used in MM may positively affect bone metabolism. Several
Pain Management
studies demonstrate that bortezomib (Velcade®) may increase osteoblast
activity. Thalidomide may halt receptor activator of NF-kB ligand (RANKL)-
Damage to bones as a result of MM often causes pain, which can be
induced osteoclast formation. Lenalidomide (Revlimid®) decreases osteo-
debilitating. Control of MM bone pain can be challenging because it usually
clast formation and activity. Thalidomide plus dexamethasone reduces
occurs when patients change position or walk ("incident pain"). All patients
bone resorption. The combination of bortezomib, thalidomide, and
must have effective pain management. Three main types of analgesia are
dexamethasone reduces bone resorption and the RANKL/osteoprotegerin
used to treat bone pain and other types of pain related to MM: nonopioid
ratio. As the understanding of MM bone biology develops, more targeted
analgesics, opioid analgesics, and adjunct medications. Uncontrolled pain
therapies should emerge.
may result in immobility and muscle and bone wasting, in turn leading to
increased risks of complications.
Bisphosphonates inhibit bone resorption, are effective in the manage-
ment of hypercalcemia of malignancy, decrease risk of fractures, and may
Additional Information
decrease pain. In the US, the bisphosphonates administered to MM patients
For more information, please contact the IMF Hotline at
include pamidronate (Aredia®) and zoledronic acid (Zometa®). An anti-MM
TheIMF@myeloma.org or 800-452-CURE (2873), or visit the IMF website
effect has been demonstrated for zoledronic acid. Pamidronate may also
myeloma.org. And, as always, we encourage patients and caregivers to com-
have an anti-MM effect. The International Myeloma Working Group (IMWG)
municate with their medical teams. mt
800-452-CURE(2873)
7

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Nurse Leadership Board
Page Bertolotti, RN, BSN, OCN
report from the nLb vii meeting
Cedars-Sinai Outpatient Cancer Center at the
Samuel Oschin Comprehensive Cancer Institute
NLB VII, the 7th meeting of the International
parity bill and helped articulate the impor-
Los Angeles, CA
Myeloma Foundation (IMF) Nurse Lead-
tance of patient access to treatments.
Elizabeth Bilotti, RN, MSN, APRN, BC
The John Theurer Cancer Center at HUMC
ership Board (NLB) was held September
Multiple Myeloma Division
24­25 in Las Vegas, NV. The two-day event
NLB VII continued with co-chair Beth
Hackensack, NJ
opened with remarks by Diane Moran, IMF
Faiman presenting a research update on
Kathleen Colson, RN, BSN, BS
Senior Vice President of Strategic Planning,
a variety of topics, including the new
Dana-Farber Cancer Institute
who updated the attendees on IMF's 2011
paradigms in MM treatment, the benefits
Boston, MA
activities and, along with NLB VII co-chair
of continuous/maintenance therapy, the
Deborah Doss, RN, OCN
Dana-Farber Cancer Institute
Teresa Miceli, also presented a brief review
low risk of secondary primary malignan-
Boston, MA
of NLB's 2011 accomplishments.
cies, less neuropathy with once-weekly or
subcutaneous administration of bortezo-
Beth Faiman, MSN, APRN-BC, AOCN
Beth Faiman
The IMF-NLB consists of 20 nurses from
mib, comparisons between 3- and 4-drug
Cleveland Clinic Taussig Cancer Institute
Multiple Myeloma Program
the leading institutions caring for multiple
combinations, "ultra high risk" MM sub-
Cleveland, OH
myeloma (MM) patients across the US.
population studies, bone health and the
Charise Gleason, MSN, NP-BC, AOCNP
This Board of experienced MM nurses has
benefits of zoledronic acid, and new agents
Emory University Winship Cancer Institute
accomplished a lot in a relatively short time
in development. The discussion of drugs
Atlanta, GA
since the first NLB gathering five years ago.
in development for MM was particularly
Bonnie Jenkins, RN
At NLB VII, the Board reviewed past work
exciting, as there are so many promising
University of Arkansas Medical School
Little Rock, AR
and planned the execution of projects for
new drugs in the pipeline: carfilzomib,
next year. Here are just some highlights of
pomalidomide, vorinostat, panobinostat,
Kathy Lilleby, RN
Fred Hutchinson Cancer Research Center
IMF-NLB activities in 2011:
denosumab, elotuzumab, perifosine, tem-
Seattle, WA
· The IMF-NLB has held four popular live
sirolimus, and others. The presentation
Patricia A. Mangan, APRN, BC
and recorded teleconferences-webcasts.
Teresa Miceli
made clear that MM is a disease with active
Abramson Cancer Center at the
University of Pennsylvania
· The IMF-NLB presented a Satellite Sympo-
research, with new dosing and administra-
Philadelphia, PA
sium at the annual meeting of the Oncol-
tion regimens leading to long-term survival
Ann McNeill, RN, MSN, APN
ogy Nursing Society (ONS) ­ Long-Term
and increases in progression-free survival
The John Theurer Cancer Center at HUMC
Survivorship: The IMF Nurse Leadership
(PFS), overall survival (OS), and quality
Multiple Myeloma Division
Board's Guidelines for Multiple Myeloma
of life.
Hackensack, NJ
Patients ­ which was attended by more
Teresa Miceli, RN, BSN, OCN
The next update was presented by guest
Mayo Clinic ­ Rochester
than 750 nurses.
speaker Dr. Shaji Kumar, a myeloma expert
Rochester, MN
· The IMF-NLB presented a poster ­ Long-
and member of the International Myeloma
Kena C. Miller, RN, MSN, FNP
Term Care Guidelines for Patients with
Working Group (IMWG). Dr. Kumar talked
Roswell Park Cancer Institute
Myeloma ­ at the prestigious biannual
about the diagnosis and management of
Buffalo, NY
International Myeloma Workshop (IMW),
Shaji Kumar, MD
high-risk smoldering MM, the role of early
Tiffany Richards, MS, ANP, AOCNP
which was held in Paris, France.
transplant, maintenance vs. consolidation, testing, risk
MD Anderson Cancer Center
Houston, TX
· The IMF-NLB published the Survivorship Care Plan
stratification, minimizing peripheral neuropathy, the
Sandra Rome, RN, MN, AOCN
for Multiple Myeloma in ONS' Clinical Journal of
best clinical trial designs, and integrating new and
Cedars-Sinai Medical Center
Oncology Nursing®.
existing drugs into new combinations. This session
Los Angeles, CA
· Nine IMF-NLB nurse leaders authored the first ever
made clear the scope of progress that has already been
Jacy Spong, RN, BSN, OCN
Mayo Clinic ­ Arizona
textbook on MM for nurses, which was edited by
made in the field of MM and the significant advances
Scottsdale, AZ
IMF-NLB member Joseph Tariman.
currently underway.
Joseph Tariman, PhD, PhC, MN, APRN-BC
· IMF-NLB delegates participated as faculty at every
Next, the discussion turned to practical matters. The
Northwestern University
IMF Patient & Family Seminar and Regional Com-
group worked on increasing the utility of the IMF-NLB
Chicago, IL
munity Workshop.
web portal, which was originally created to enhance
ASSOCIATE MEMBERS
B. Nadine Baxter-Hale, MNSc, APN-BC, AOCNP
· IMF-NLB members have contributed updates and/or
communication among members and facilitate com-
University of Arkansas for Medical Sciences
supportive care articles to every issue of Myeloma
plex teamwork requiring joint effort. Later, the group
Myeloma Institute of Research and Therapy
Today.
focused on the manuscript development process as
Little Rock, AR
· IMF-NLB member Bonnie Jenkins led an inspiring
presented by medical writer Lynne Lederman, PhD.
Elizabeth Finley-Oliver, RN
H. Lee Moffitt Cancer Center and Research Institute
session at the annual IMF Support Group Leaders'
The IMF-NLB is currently drafting Guidelines for Man-
Tampa, FL
Summit.
aging MM Patients Undergoing Stem Cell Transplant.
In addition, with the assistance of IMF Board of Direc-
Sandra Kurtin, RN, MS, AOCN, ANP-C
· The new "Oh, Nurse!" blog premiered on myeloma.
Arizona Cancer Center
tors member Michael Katz, the IMF-NLB is working on
org and has so far featured seven entries by seven
Tucson, AZ
developing the Survivorship Care Plan Online Tool.
IMF-NLB members.
Kimberly Noonan, RN, ANP, AOCN
Dana-Farber Cancer Institute
· IMF-NLB member Kena Miller met with 10 legisla-
Charise Gleason gave a presentation about
Boston, MA
tors in Albany in support of the oral chemotherapy
nurse-led clinical research, which will lead to the
Continues on next Page
8
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Let ers to the IMF
I am inspired by Harold Dozier's story in the Fall
The IMF is our "bible" for MM. You have all the information regarding our
2011 issue of Myeloma Today, as well as cyclist
disease that we need. The IMF Hotline coordinators offer the most current
Andy Sninsky's letter to the IMF. I was diagnosed
and relevant information to both the newly diagnosed patients and the
with stage III multiple myeloma in 1992, and have
long-term survivors. And their kindness, patience, and knowledge are a
cycled 328 miles over four days each of the last
real comfort to us. The IMF is clearly an organization dedicated to taking
five years in the American Cancer Society Pan Ohio
care of MM patients and families.
Hope Ride (POHR). Funds raised enable patients
Our MM support group in Stillwater, MN, has been in operation since
and families to access leading myeloma and other
2004, beginning in my home with just a few people. Over the past seven
cancer treatments by staying for free at one of over 35 Hope Lodges in the
years, we have outgrown that cozy surrounding and now count 54 MM
US. I plan to cycle 328 miles again in July 2012. Other myeloma patients
patients and caregivers as members. Usually, we meet once a month in the
cycle with me.
large conference room at the Family Means Center. But for our October
Like Harold, I have had many treatment protocols and side effects. After
2011 meeting, we enjoyed some leisure time together by chartering a
diagnosis, I continued normal activities, worked full-time until my firm's
cruise on a paddlewheel boat. With 52 of our patients and caregivers in
required retirement age, and continue to exercise daily. My leading
attendance, we spent three hours on the beautiful St. Croix River, and
advocate, caregiver, and wife of 41 years, Kathleen, and I have shared our
everyone had a wonderful time.
survival story and empowerment views with 62 groups, many of which are
We are a FAMILY that does just what the definition suggests. We nurture
IMF support groups. Other patients and caregivers inspire us.
each other and share information and education. But most of all we share
Jim Bond
hope. And we are living and enjoying life.... one day at a time.
Karl Vollstedt and Barb Davis
I just wanted to thank you for sending IMF informational
brochures to our multiple myeloma support group. We
Thank you for sending me Myeloma Today. For the past 20 years, I have
had a table at a LLS blood cancer conference this past
followed with great admiration your efforts to update physicians inter-
weekend to promote our support group, and while there
ested in this disease, as well as to educate MM patients and their families.
were not many myeloma patients in attendance, there
Special thanks to Susie Novis, whose perseverance, charm, and courage
were lots of nurses and health care professionals who
helps make this possible. I thank you from the bottom of my heart.
took our IMF brochures as well as our support group flyers. The nurses
Esther Aghai, MD
were very appreciative to have good myeloma brochures to share with
their patients. We should have ordered more ­ we just had no idea they
If you would like to share your thoughts with the IMF or with readers of Myeloma Today,
were going to be so popular! Thanks again for all you do to support the
or if you wish to suggest or contribute future content for this newsletter, please contact:
IMF, and for helping us get useful myeloma information to the people
Marya Kazakova ­ Publications Editor
International Myeloma Foundation
who need it. Knowledge is power!
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607
Sue VanDuyn
mkazakova@myeloma.org
NLB -- continued from page 8
generation of evidence-based nursing recommendations to enhance
forums, such as teleconferences, webcasts, and national and regional
patient management and care. The rest of the day was spent with
meetings.
members separating into groups for breakout sessions in order to
continue planning and content development for their respective
The Publication Taskforce, led by Tiffany Richards in 2011 and Elizabeth
team projects.
Bilotti in 2012, reviewed a list of suggested MM blog topics, in addition to
the group's ongoing projects. The Clinical Trials Taskforce, led by Joseph
Day 2 of NLB VII started with opening remarks by Diane Moran, who
Tariman, proposed several activities for consideration and discussed
presented the goals and agenda for the remainder of the meeting. The
which projects could be feasibly undertaken.
group discussed emerging progress ideas that came out of the previous
day's breakout sessions. Next, the team leaders of IMF-NLB taskforces
The Clinical Trials Taskforce, led by Joseph Tariman, is developing
presented updates on the work of their groups.
separate sets of educational materials for nurse and patient communities.
The materials available in print format for publication and as slides for
The Patient Education Taskforce, led by Teresa Miceli, is updating patient
meeting presentations will help nurses and patients better understand
education materials with information from the Survivorship Care Plan
the treatment opportunities available within the context of clinical trials.
and effectively disseminating this information to patients, caregivers, and
IMF-NLB members are also preparing to conduct a nurse-led research
patient advocacy groups. In 2011, the taskforce presented this informa-
project in 2012.
tion at four IMF Patient & Family Seminars and 10 Regional Community
Workshops, plus 12 support group teleconferences. Future updates will
In her closing remarks, Diane Moran touched on the role of emotional
include new MM medications such as pomalidomide, carfilzomib, and
intelligence in the nursing profession and noted that emotional compe-
denosumab.
tencies are not mere innate talents, but learned capabilities that must be
developed to achieve outstanding performance. She acknowledged the
The Nurse Education Taskforce, co-led by Charise Gleason and Beth
amazing productivity of NLB VII and the impressive accomplishments
Faiman, is working on key educational messages for the community
of IMF-NLB members in 2011, but noted that the Board's work has just
oncology nurse audience and developing educational materials for various
begun, with much more expected in 2012. mt
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9

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News & Notes
ASH 2011 interviews and webcasts
Get your Myeloma Today online!
The 53rd annual meeting of the American Society of Hematology (ASH)
The IMF's quarterly newsletter Myeloma Today is a premier resource for
was held December 10-13, 2011, in San Diego, CA. This important event
learning about the latest advances in MM treatment and research, quality
for medical professionals brings together clinicians and scientists from
of life issues, and patient and caregiver stories of courage and inspiration.
around the world, including a large contingent of multiple myeloma (MM)
clinicians and researchers.
If you would you like a paperless way to read Myeloma Today, please
sign up to receive an electronic edition of the newsletter. The online
In keeping with the IMF's commitment to help you stay up-to-date on the
version makes it easy to share information with friends and fam-
latest MM therapies and discoveries, the IMF brings you highlights from
ily, and is environmentally friendly. To subscribe, please email us at
the meeting in the form of session webcasts and interviews with key MM
subscriptions@myeloma.org.
experts. As these videos become available, the IMF is posting them on
our website myeloma.org, along with presentation abstracts and slides
There is no charge for a Myeloma Today subscription, although we ask
(where available).
our members to consider making a tax-deductible contribution to the IMF
to support our efforts in putting together this outstanding publication.
The webcasts taped at the meeting
are reports on the current status of some of the most interesting research
IMF staff updates
in MM. Please be aware that, at the time of posting, in some cases the
After 10 years as an IMF Hotline Coordinator, helping
interviewees are reporting on interim data from incomplete clinical trials.
thousands of MM patients and their loved ones, the
Therefore, not all the data presented are final results, and it is possible
inimitable Nancy Baxter has retired.
that results will be different when the data has matured with long-term
Over the years, many have benefited from Nancy's
follow-up. None of this research has yet been peer-reviewed and pub-
compassionate nature and depth of knowledge about
lished in a medical journal.
MM. We are extremely grateful to have had her as part of the IMF team
Boca Raton IMF Patient & Family Seminar
for such a long time. Countless letters and comments from patients and
features stellar faculty
caregivers have confirmed what a difference Nancy has made in their lives.
We will all miss her terribly.
Emphasizing education, advocacy and support, the IMF Patient & Family
Seminars empower patients and provide invaluable information to the
The IMF's toll-free Hotline
MM community. The seminar is structured as a two-day format, covering
is one of our longest-
a broad range of topics, and featuring world-renowned MM specialists
running programs, and
as faculty.
one of our most important,
providing callers with the
In 2012, the first Patient & Family Seminar of the year brings together a
best information about MM
stellar line-up of doctors, and registrations for the event are expected to
in a caring and compassionate manner. The Hotline is staffed by
reach capacity soon. Don't miss this opportunity to have your questions
Debbie Birns, Paul Hewitt, Missy Klepetar, and Judy Webb. The phone
answered by these highly sought-after MM experts
lines are open Monday through Friday, 9 a.m. to 4 p.m., and you
Dr. Brian Durie
can either dial 800-452-CURE (2873) or "Click-to-Call" via the IMF
Cedars-Sinai Comprehensive Cancer Center
website myeloma.org. Your questions can also be submitted via email
Los Angeles, CA
TheIMF@myeloma.org.
Share your thoughts
Dr. Kenneth Anderson
Be an active reader and viewer. Share your thoughts and questions about
Dana-Farber Cancer Institute
any article, video, or blog that appears on the IMF website myeloma.org
Boston, MA
by clicking on the comments tab, and join the discussion on matters of
importance to everyone touched by myeloma. Your input can help others.
Dr. Bart Barlogie
Our site features webcasts and interviews from the premier meetings
Myeloma Institute for Research and Therapy
for MM patients and healthcare professionals, as well as webinars and
University of Arkansas for Medical Sciences
teleconferences that cover a broad range of topics.
Little Rock, AR
You can subscribe to blogs by doctors, nurses, patients, caregivers, and
others in order to receive email notification when a new posting is made.
Dr. Asher Chanan-Khan
We hope you find this new capability helpful.
Mayo Clinic
Jacksonville, FL
The IMF has a social community
Join the IMF's active social community, on both twitter and facebook.
Dr. Shaji Kumar
Find us on
at www.facebook.com/myeloma
Mayo Clinic - Rochester
Follow us on
@IMFmyeloma
Rochester, MN
We already consider you part of the family... Now, let's be friends!
10
myeloma.org

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Patient & Caregiver Experience
hangin' in: 20+ years of Living with myeLoma!
By Barbara Hammack
I would like to share my multiple myeloma (MM) journey
I've learned so much over the years, not just how
with others who are traveling this rocky road. We are all
to live with cancer but how to live, period. After all,
marvelous survivors; whether you are just starting to deal
cancer is but one of life's indignities. None of us will
with MM, or are someone with a few years under your
escape pain and sorrow in our lives. None of us make
belt. You are all so very important to me.
it much past 35 without having something rattle our
My incredible journey started one quiet Sunday night
very being. Eventually, we must learn how to navigate
in July 1991 when my doctor called a few days after my
the minefield that is "adulthood."
annual check-up. "I've been following some protein levels
I have found the resiliency of the human spirit. I have
in your blood work," he said gently. "And I want you to
survived the death of my parents, the loss of the love
see a hematologist."
of my life, and then, my diagnosis with MM. I was
The first oncologist I saw refused to be straight with me;
able to work until 1999 when chronic pain forced me
I told him I was a single parent of two teenagers and
to retire, but I still try to do something each day that
needed to know what was going on. But he still tried to
brings me pleasure; from solving a hard crossword
sugar-coat the reality of what he suspected I had. He said
puzzle to enjoying my two grandsons to having lunch
that I "probably" had "smoldering multiple myeloma"
with a dear friend or simply hangin' with my family.
that didn't require treating yet, but needed to be followed
Some days are better than others, but that's just life.
every three months. I hurried over to the medical library at the National
Institutes of Health (NIH) ­ I live just outside of Washington, DC ­ and
As for myeloma, I've learned that there is no "right answer" when it comes
read that most people with MM were African-American men in their
to treatment. There is no real consensus of what one "must do." This
70's. As a 45-year-old Caucasian woman, this was clearly not my demo-
means that each of us has to weigh ALL considerations when deciding
graphic! Then I learned that the statistics for surviving MM were from
which path to pursue and, if one option doesn't work, there will be a Plan
7 to 14 months.
B, C, D, and probably even E. What is critical is to believe in and OWN
whatever decision we make at each step of the way. It does no good to be
I went into complete denial. I felt perfectly healthy; had a job I loved,
looking over your shoulder at the path not taken.
a good man in my life, and frankly, was just too busy to be bothered by
any kind of serious illness. I considered it then ­ and still do ­ as a real
As for statistics, I am NOT a fan. I've surpassed every benchmark and I
nuisance in my life.
have no plan of giving up. No one knows my "expiration" date, so why
agonize about dying from MM when I am still able to live with it. A quote
In 1993, I learned from the oncologist that my IgG had climbed from
from Maya Angelou expresses how I try to live my life: "We spend precious
3100 to 5500, but he still did not recommend treatment. I decided it was
hours fearing the inevitable. It would be wise to use that time adoring our
time for a second opinion. My primary doc set me up with a consultation
families, cherishing our friends, and living our lives."
where I was told quite emphatically that I needed an immediate bone
marrow transplant. It was hard to grasp that I could have gone from "no
I've been blessed to witness MM morph into what is for some folks, myself
treatment yet" to needing such a harrowing procedure. I sought out a
included, a chronic disease that can be managed successfully for many
different oncologist. In just one month between consults, my IgG had
years. My goal is to keep hangin' in, waiting for the next thing to come
climbed to over 7000.
along to keep me hangin' in even longer. mm
My new oncologist started me on the only chemo available then: Alkeran®
Editor's Note: Barbara Hammack is an active member of the MM listserv,
(melphalan) and prednisone. I responded immediately, and moved on to
where she participates under the moniker "Boogie Barb."
transplant in 1994. They had just begun using stem cells along with the
bone marrow; with no other option to extend my life, it was a no-brainer.
I achieved remission, but there were still traces of MM cells in my marrow
until 2000. I've been on and off a maintenance protocol since then.
Myeloma ManagerTM Personal Care AssistantTM
Fast forward to July 2011, the 20th anniversary of this terrible diagnosis.
We are pleased to offer you, free of
To tell you the truth, I have no idea why I have been so fortunate in
charge, the Myeloma ManagerTM
surviving for so long. For sure, I have not had wildly aggressive disease.
software, v4.0.2. Designed and
Over the past 20 years, by far my biggest lesson has been to just keep
developed by the IMF specifically
hangin' in. I have had my share of medical issues over the past decade;
to help patients and caregivers
including a near-fatal attack of meningitis in 2005 and a broken femur in
battling multiple myeloma, the
Myeloma ManagerTM provides
2007. While neither incident was directly blamed on MM, my docs and I
a tool to capture laboratory
agree that surely the disease played some role in these events. I also had
results
and
display
and
shingles a year after my transplant and suffer from post-herpetic neuralgia,
print tables and charts to show how those results change over time.
a chronic condition that has permanently damaged a nerve in my back that
We hope that you will find it useful.
limits my activities.
800-452-CURE(2873)
11

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International Affiliates
upDates from arounD the gLobe
IMF Europe: Looking Back, Looking Forward
By Gregor Brozeit
Since March 2006, IMF Europe has sponsored or cosponsored 96
long-standing desire to conduct a joint meeting. The first ever Patient &
multiple myeloma (MM) patient or doctor educational meetings
Family Seminar in Denmark was co-sponsored by the IMF and the Danish
in 9 European nations. Every meeting has featured national, regional,
MM patient association, Danske Myelomtose Forening (DMG). Held in
and local clinicians and/or researchers who discussed the latest strategies
Nyborg, the meeting featured two of the Denmark's top MM specialists,
to treat MM. Top MM experts from the US have participated in European
Prof. Niels Abildgaard and Dr. Peter Gimsing, with Prof. Kyle from the US
meetings sponsored or cosponsored by the IMF, including Drs. Robert
joining the faculty as a special guest. On the following day, Prof. Kyle was
Kyle, Brian Durie, Bart Barlogie, Morie Gertz, and David Vesole.
the keynote speaker of the semi-annual meeting of the Danish Myeloma
Study Group, a gathering of 60-70 of the top hematologists in Denmark.
In 2011, IMF Europe organized or participated in 22 patient and
doctor meetings. Prof. Kyle headlined five meetings, including the
Germany
IMF's first patient meeting in Denmark, a Danish study group meeting,
Hosted and organized by Prof. Hartmut Goldschmidt, IMWG member and
a German patient and family seminar, as well as two doctor meetings in
chair of the German Multiple Myeloma Study Group (GMMG), the 11th
Germany. In addition, Professors Hermann Einsele (Germany) and Mario
annual Myeloma Days combined an annual patient meeting with a semi-
Boccadoro (Italy) participated in IMF meetings held in the US. In Europe,
annual GMMG meeting. This was Prof. Kyle's third speaking engagement
11 meetings cosponsored by the IMF ­ eight for patients and three for
at the event.
doctors--were held in four countries in Fall 2011.
The annual Heidelberg patient meeting, the oldest and largest MM patient
Czech Republic
event in Germany, was attended by more than 220 persons this year,
The Czech Myeloma Group (CMG) and the IMF cosponsored the 7th
including 70 newly diagnosed MM patients. Prof. Kyle provided the key-
annual Czech Patient & Family Seminar in Lednice on September 30,
note address with a historical overview of MM research and treatment. The
which featured Prof. Roman Hajek. More than 100 persons attended.
other faculty members were drawn from the University of Heidelberg and
Roman Sadzuga, founder and president of the Polish MM patient associa-
the German Cancer Research Center (DKFZ). Under the leadership of Prof.
tion, provided the keynote address.
Goldschmidt, the university and the DKFZ share resources for MM clinical
and basic research. Each faculty member participated in two breakout
CMG coordinator Iveta Mareschova attended this year's Patient & Family
sessions each in order to allow more participants to meet different experts
Seminar in San Francisco to observe how the IMF conducted its meetings.
in smaller settings. "The Heidelberg meeting went very well," said Prof.
"After seeing how Susie ran the caregiver breakout session," said Iveta, "Dr.
Kyle. "The patients asked a lot of
Hajek and I thought it would be a productive addition to our meeting, and
pertinent questions."
we were pleasantly surprised by how well it was received. More than 40
persons attended our first caregiver session."
Immediately following the Hei-
Italy
delberg meeting, Prof. Kyle spoke
to students participating in an
Two patient meetings were held in
international course for oncol-
Italy in September, in Rome and
ogy management at the University of Ulm. His tour concluded with a
in Lucca (Tuscany). Susie Novis
lecture to 65 University of Freiburg hematology faculty hosted by Prof.
attended the Rome meeting and
Monika Engelhardt.
Vittorio Schirinzi hosted the Lucca
meeting. Vittorio is the founder
On October 23, Prof. Goldschmidt joined Dr. Igor Wolfgang Blau at the
of the Schirinzi Myeloma Patient
Berlin Charité Benjamin Franklin campus as speakers for the second
Association, the IMF affiliate in Italy, and assembled a faculty of medical
Berlin patient meeting in 2011 cosponsored by the Berlin MM patient
speakers from the Universities of Pisa, Florence, and Parma. One of the
support group and IMF Europe. Elke Schutkowski, founder and leader
speakers, Prof. Nicola Giulini, is a past recipient of the IMF Brian D. Novis
of the Berlin group said, "We have a very sophisticated group of patients
Research Grant.
and family members, and they value the excellent speakers we have been
able to attract."
Both meetings went exceptionally well. "Patients and family members,
as well as individual faculty presenters all gain something positive out of
On October 29, Dr. Christian Langer hosted a patient meeting at the
these meetings," said Vittorio. "I'm very pleased with the progress we've
University of Ulm, with more than 160 attendees. The distinguished
made over the years and hope to develop a more ambitious agenda as we
faculty included Prof. Donald Bunjes and Prof. Einsele, as well as Dr. Jens
continue to grow."
Hillengass, arguably the top expert in MM imaging in Germany.
Denmark
The November 19 patient meeting was the second event cosponsored by
the IMF and the Leipzig MM patient support group this year. Speakers
Ole Dallris, chairman of the Danske Myelomtose Forening (DMG) and a
included Drs. Luisa Montavani Löffler, Monika Keller, and Dr. Christoph
long-term MM patient, provides services that include phone counseling,
Schimmelpfennig. With a packed house of more than 100 attendees, IMF
a newsletter, and patient meetings throughout Denmark. Ole and the
Europe culminated a successful year of meetings.
DMG have long been friends of the IMF, so it was the fulfillment of a
Continues on next Page
12
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Support Groups
the imf weLcomes new mm support groups
Arkansas
Michigan
The Arkansas MM Support Group meets on the 1st Friday of each
The Greater Grand Rapids MM Support & Networking Group meets
month from 10:00 a.m. to 12:00 noon at First Presbyterian Church
on the 3rd Monday of each month at 5:30 p.m. for supper, with meet-
in Texarkana. For more information, please contact Andy Shoptaw at
ing directly following from 6:00 to 7:30 p.m. at Gilda's Club in Grand
jewellshoptaw@live.com or 870-773-0273 or 903-826-7993.
Rapids. For more information, please contact Sue & Harold Van Duyn at
Delaware
hsvanduyn2@aol.com or 616-669-0781.
The Delmarva MM Support & Networking Group also serves areas of
North Carolina
Maryland and Virginia. The group meets on the 3rd Saturday of each
The Charlotte Area MM Support group (CAMMS) meets the 1st Saturday
month from 1:30 to 3:30 p.m. at The Eden Hill Medical Center in
of each month from 10:00 a.m. to 12:00 noon at the Carmel Presbyterian
Dover. For more information, please contact Josephine Diagonale at
Church. For more information, please contact Sandy or David Hirsch at
mmsupportde@comcast.net or 302-233-8229.
shirsch48@gmail.com or704-840-6740.
Florida
Ohio
The Boca Raton MM Support Group meets the 1st Monday of the
The Toledo Area MM Support & Networking Group meets the 3rd Tuesday
month from 6:00 to 8:00pm at James Rutherford Community Center.
of each month from 2:00 to 4:00 p.m. at the Perrysburg Way Public Library
For more information contact Dawn Toimil at dawn8992@yahoo.com or
in Perrysburg. For more information, please contact Inge Lanzenberger at
561-901-5938, or Gail Young at alghyoung@comcast.net or 561-637-4682.
inge1028@gmail.com.
The Nature Coast MM Support Group meets the 3rd Wednesday of the
Tennessee
month from 6:00 to 7:30 p.m. at the Oak Hill Partners Club at Oak Hill
The Nashville MM Support Group meets on the 3rd Wednesday of
Hospital in Brooksville. For more information, please contact Dianne Terry
each month from 11:00 a.m. to 12:30 p.m. at Gilda's Club. For more
at dianne_mm@tampabay.rr.com or 352-621-0672, or Richard Blustein at
information, please contact co-facilitator Kelly Fields Owens, LMSW, at
blustein22@aol.com or 352-428-4536.
kelly.owens@vanderbilt.edu or 615-322-4887.
Indiana
Texas
The IU Simon Cancer Center offers "First Mondays," a community-wide
The Kingwood Area MM Support Group meets on the 3rd Saturday of
support program open to cancer patients and their families. "First Mon-
each month from 10:00 a.m. to 12:00 noon at the YMCA in Kingwood. For
days" meets the 1st Monday of each month from 5:00 to 7:30 p.m. in
more information, please contact Mike Boyd at mboyd4814@gmail.com or
Indianapolis. For more information, please contact Stephanie White at
281-360-9267.
swhite9@iuhealth.org or 317-948-2538.
Louisiana
How to contact the IMF Support Group Team
The North Louisiana MM Support group meets on the 3rd Saturday of each
month from 11:00 a.m. to 1:00 p.m. at the University Worship Center in
Robin Tuohy ­ Director of Support Groups
Shreveport. For more information, please contact Pete or Carolyn Petty at
phone: 203-206-3536
cfpett@gmail.com or 318-518-2693 or 318-797-6620.
email: Tuohy@snet.net
INTERNATIONAL -- continued from previous page
Kelly Cox ­ Regional Director, Support Groups
and Regional Community Workshops
Plans for 2012
phone: 800-452-CURE (2873)
In addition to patient and doctor meetings, IMF Europe has been focused
email: kcox@myeloma.org
on fulfilling the ever-growing demands for informational materials and
Joanie Borbely ­ Regional Director, Support Groups
online resources. MM support groups remain scarce in most countries,
phone: 860-655-7107
but tend to be well connected with community resources where they
email: jborbely@myeloma.org
exist, and IMF Europe remains committed to assisting them in every way
possible.
The IMF's Myeloma ManagerTM Personal Care AssistantTM software tool,
Andrew Lebkuecher ­ Regional Director, Support Groups
designed specifically to help patients and caregivers battling MM track
phone: 404-353-7127
and understand their lab results, has been translated into German, French,
fax: 678-546-3045
Spanish, and Italian. It will be disseminated in these languages in 2012,
email: alebkuecher@myeloma.org
while additional versions are being prepared in Danish, Norwegian, and
Swedish.
Gregor Brozeit ­ European Programs
Also in 2012, the IMF will be re-launching free electronic newsletters in
email: greg.brozeit@sbcglobal.net
German, French, Spanish, and Italian.
Please feel free to contact me at greg.brozeit@sbcglobal.net with ques-
tions, suggestions, or requests for additional information. mt
800-452-CURE(2873)
13

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Support Groups
peopLe heLping peopLe
You are never alone in your bat le against myeloma
By Robin Tuohy, IMF Director of Support Groups
How did myeloma enter your life and what
publications, an annual DVD of an IMF Patient & Family Seminar, and a basic
is your background with the IMF?
template to help the group develop a website.
My husband Michael was diagnosed with multiple
The IMF forms and maintains relationships with MM support group leaders and
myeloma (MM) in 2000 at age 36. The IMF was
members. Our staff has personally visited almost all of the US-based groups. In
there for me and my family ­ and continues to be
the US, the IMF's support group team, which includes me and three regional
there for us ­ so we've now been involved with the IMF for more than a decade.
directors, has attended all IMF Patients & Family Seminars as well as Regional
Michael and I founded the first MM support group in Connecticut in 2001, soon
Community Workshops. In addition, the IMF holds annual Support Group Lead-
after meeting the IMF while attending Advocacy Days in Washington, DC. Our
ers' Summits. In July 2011, we held the twelfth such Summit.
kids started supporting the IMF when they were still quite little, beginning with
How do the Support Group Leaders' Summits benefit the groups?
a lemonade stand, and my daughter Ally just recently held an event to raise
myeloma awareness and benefit the IMF as part of her senior project in high
The IMF's 12th annual Support Group Leaders' Summit took place in Irving,
school. In early 2005, I came to work for the IMF
TX. A total of 76 support group leaders representing 50 groups attended the
as a support group assistant. In the summer of
Summit. While many leaders had
2007, our family hit the road with the MYELOMA
attended prior Summits, there
MOBILE, an awareness project to help educate
were 33 leaders who attended
and empower patients and their families in local
for the first time in 2011.
communities across the United States. The IMF
In the course of the Summit, par-
is more than a place where I work ­ it is family
ticipants are updated on the lat-
to us.
est information about myeloma
I'm very humbled to be a part of the most
treatment and care, and are pro-
knowledgeable and caring organization I've ever
vided with new leadership tools
had the pleasure to work for. The IMF is truly
and approaches. The program
dedicated to improving the quality of life of
is designed to help leaders further enhance the experience for their support
myeloma patients while working toward prevention and a cure. Together
groups back home. Ultimately, all IMF programs and services are designed to
with the other members of the IMF `s support group team, I am committed to
benefit the patient. This is the case with IMF's research, education, advocacy,
assisting individuals and communities by reaching out to patients, their families,
and support programs.
friends, and healthcare workers.
As support group leaders, my husband and I attended the Summit in 2001,
Would you tell us about the IMF's work with MM support groups?
and from that day forward have felt a bond with MM group leaders all over the
world ­ people walking in our same shoes, trying to learn all they can about MM,
Through a global community of IMF-assisted support groups, the IMF seeks to
helping others in their local communities.
ensure that MM patients, their caregivers, family members, and friends have local
access to support, information, and a strong sense of collective identity. From
The relationships we formed at the 2001 Summit have continued to grow stron-
my personal experience, I know how important such resources are to those of
ger through the years. "If One can Make a Difference; Two can Make a Miracle"...
us who are dealing with MM.
We all strive to be a part of the Miracle!
The IMF currently supports 120 MM groups in the United States, plus many
In what other ways does the IMF support the group leaders?
groups abroad. There is now a worldwide network of more than 150 MM sup-
We maintain a web-based "extranet" so MM support group leader have a place
port groups, and I am happy to report that our ranks are continuing to grow.
to post and share documents, ideas, information, pictures, etc. It is a great way
In the last year or so, the IMF has facilitated the formation of 11 new groups in
for leaders to start conversations with one another, as well as share practical tips
the US alone (please see box for more info). More groups are also being formed
and emotional support.
abroad.
In 2011, the IMF implemented a brand new program for group leaders, a
Tell us about these groups and how the IMF supports them.
monthly teleconference. Leaders are able to dial in and talk about any challenges
The power of psychosocial support for cancer survivors has been wel -
they may have, share success stories, ideas for planning, etc. This is a fantastic
documented. Support groups that hold regular meetings can help increase
new program that has already become a hit among the group leaders.
knowledge, decrease anxiety, and create a sense of community. IMF-assisted
Any closing comments?
MM groups are disease-specific, and many participants find that this is extremely
The IMF and our support group team are very excited for 2012, with an eye on
helpful to creating a network of support. Although the IMF does not sponsor
launching several new and unique programs geared to support the MM groups
these groups, we are dedicated to overseeing the needs of each group and
specific to the IMF. I encourage every individual whose life has been touched by
its leaders. Each group has a unique personality and identity that reflects its
myeloma to seek out a group in their area. If such a group does not yet exist,
members and their experiences with MM. The objectives of each group vary, so
please consider starting one. It takes dedication and perseverance, but can be an
the IMF is here to assist in many ways.
extremely rewarding experience.
We help develop outreach letters and flyers, promote the groups through the
The IMF's support group team is dedicated to assisting individuals and commu-
IMF website and our publications, and assist with mailing to local patients, care-
nities. We reach out to patients, their families, friends, and healthcare workers.
givers, oncologists, and hospitals. We provide direction and ongoing guidance in
And we invite you to reach out to us. The IMF is always here for you. mt
starting, maintaining and sustaining a group. The IMF provides free educational
14
myeloma.org

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Education & Awareness
spotLight on aDvocacy
IMF's First Congressional Briefing
With the country's ongoing deficit crisis and looming budget cuts, the
Carfilzomib is just one
IMF thought it was the opportune time to illustrate areas where the US
example of the results of
remains the world's leader ­ science and medicine. What better way to
NIH research. We are at
highlight the importance of biomedical research than myeloma?
the cusp of many new
On October 25th, the IMF Advocacy team headed to the capitol to host our
discoveries in cancer.
first ever congressional briefing ­ Why Investment in Biomedical Research
Now is the time to invest
is Necessary: A Case Study on Myeloma. Not only was this a wonderful
in and translate those
opportunity to underscore the importance of continued funding for
discoveries into effective
cancer research at the NCI at levels that support
treatments and cures.
innovation, but it was also a way to raise awareness
Mike Katz, a 21-year sur-
of the disease and educate members of congress as
vivor of myeloma, took to
well as their staff.
the podium to conclude
Dr. Barbara Klencke and Mike Katz lead the
"Living with Myeloma Thanks to Next-Generation
We were very fortunate to have our event open with
the morning session. Put-
Treatments" panel discussion,
remarks from Congresswoman Jackie Speier (D-CA),
ting a face on myeloma
a champion for research and innovation. Congress-
is imperative when telling our story on Capitol Hill. Just about everyone
woman Speier serves as co-chair of the Congressional
has been touched by cancer and could either see themselves or the face
Biomedical Research Caucus, a 78-member biparti-
of their loved ones in Mike's that day. Patients like Mike are the reason
san caucus dedicated to educating and advancing life
why doctors like Dr. Landgren and Dr. Klencke are so dedicated to their
science issues throughout Capitol Hill. Through her
research.
leadership of this caucus and her personal office, she
Mike's message was simple: "Biomedical research is hope for the future
has been a very strong advocate for cancer research.
Congresswoman
for me, my fellow patients, and our families." When Mike was diagnosed
We can't thank her enough for her tremendous
Jackie Speier
at age 37, he was a father of three young children, and he thought his life
leadership and support of our cause.
gives remarks
was over. Twenty-one years later, Mike has seen his three sons graduate
Our key note speaker, Dr. Ola Landgren,
from college and his first three grandchildren born.
Chief of the Multiple Myeloma Section and
The
investment
in
Senior Investigator, the National Cancer
research means every-
Institute (NCI) at the National Institute
thing to patients ­ it
of Health (NIH), discussed his ongoing
means LIFE. We thank
research aimed at the treatment, causa-
Congresswoman Speier,
tion, diagnostics, prognostics, and natural
Drs.
Landren
and
history of multiple myeloma and its pre-
Klencke, and Mike Katz
cursor condition MGUS (monoclonal gam-
for their participation in
mopathy of undetermined significance).
what turned out to be a
Dr. Ola Landgren discusses
Dr. Landgren spoke of the advancements
very successful briefing.
advances in MM research
in treatment, as well as the expanded
We'd also like to thank Onyx Pharmaceuticals for providing the IMF with
knowledge and understanding of the disease that has come as a result
an educational grant that made this briefing possible.
of this research. While discussing his work, Dr. Landgren made a point
Update on the Cancer Coverage Parity Act
that resonated with the entire audience. He said, "We would never send
of 2011
an early breast cancer patient home and tell them to come back when it
metastasizes." It was an eye opening statement and a brilliant example of
In August, US Representative Brian Higgins (D-NY ) introduced HR 2746,
why it is crucial to fund this research at the NCI.
the Cancer Coverage Parity Act of 2011. This important piece of legislation
requires health insurance coverage of oral anticancer drugs on terms no
In addition to Dr. Landgren, our panel included Dr. Barbara Klencke
less favorable than the coverage provided for intravenously (IV) adminis-
(Onyx Pharmaceuticals) and Michael Katz (patient advocate, 21-year
tered anticancer medications.
myeloma survivor, member of the IMF Board of Directors). Dr. Klencke
gave a brief overview of the development and FDA approval process of
Our thanks go to each of the more than 250 advocates who wrote over 300
carfilzomib, a promising new treatment for myeloma. She talked about
letters to their Representative to help eliminate the disparity in coverage
the discovery process and the research that goes into the development
between oral and IV chemotherapy. In addition, many advocates met
of drugs like carfilzomib. This helped our audience understand that none
face-to-face with their Representative to ask for his or her co-sponsorship
of it would be possible without research efforts at the NIH. Work by Dr.
of HR 2746. We are happy to share that your initiative and hard work is
Landgren and other researchers at institutes funded by the NIH makes
paying off!
possible an improved understanding of what causes myeloma and how to
At the time of publication, HR 2746 is now co-sponsored by Representatives
treat the disease effectively.
Continues on Page 16
800-452-CURE(2873)
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Investing In The Future
the hope society
For nearly 21 years, the IMF has been the center of education and support
Susan believes that by participating in the program as a monthly donor,
for multiple myeloma (MM) patients and family members who rely on our
she is investing in the research that has already made a difference in
services. In a similar way, the IMF depends on its donors to help continue
her life as a myeloma patient. "The progress made thus far in treatment
and improve upon those services.
success is due largely to research that has been funded by the IMF," she
explains. "It's a little selfish," she continues, "I support the IMF because
During the summer of 2009, the IMF introduced The Hope Society, a
I'm trying to save my own life."
sustained giving program that allows members to contribute monthly
or quarterly gifts to the IMF. In two years, The Hope Society has grown
Members of The Hope Society make a huge impact on the continuation
to include over 150 members who have contributed more than $40,000
of the IMF's mission, and becoming a member is simple. To set up
toward the IMF's research, education, support, and advocacy programs.
your own recurring gifts for the IMF, please contact Randi Lovett at
rlovett@myeloma.org or 800-452-CURE (2873).
Susan Gannon joined The Hope Society
in December 2009. Diagnosed with
Membership Level
Giving Range
MM three years earlier, she first learned
Member
$5 ­ $12 Monthly
about the IMF's research and edu-
$35 to $149 annual y
$10 ­ $37 Quarterly
cation programs while attending an
Supporter
$13 ­ $41 Monthly
IMF Patient & Family Seminar near
$150 to $499 annual y
$38 ­ $125 Quarterly
her hometown of Houston, Texas. She
Friends' Circle
$42 ­ $83 Monthly
became an active supporter of the IMF
$500 to $999 annual y
$126 ­ $250 Quarterly
soon after, often making more than one contribution in the same year. "I
Associate's Circle
$84 to $208 Monthly
$1,000 to $4,999 annual y
$251 ­ $1,250 Quarterly
believe the more we can contribute to the area of myeloma research, the
better my chances are," she says.
Partner's Circle
$417 ­ $833 Monthly
$5,000 to $10,000 annual y
$1,251 ­ $2,499 Quarterly
myeLoma 200 ­ cLoser to a cure
ADvOCACY -- continued from previous page
Progress in multiple myeloma (MM) research and new approaches to
Joe Baca (D-CA), Jeff Fortenberry (R-NE), Barney Frank (D-MA), Rush Holt
treatment are improving outcomes for people diagnosed with MM,
(D-NJ), and Steve Israel (D-NY ). mt
but there is much more to be done. The IMF is celebrating our 21st
year providing myeloma patients, caregivers, physicians, nurses, and
The IMF Advocacy Voice: Get Fired Up!
researchers the tools they need to fight this disease.
Raise Your Voice! Get Out There and Take Action!
In honor of this tremendous achievement, we have re-launched one
Please help us pass HR 2746, the Cancer Coverage Parity Act of 2011.
of our most successful fundraisers, MYELOMA 200 ­ CLOSER TO A
Write to your US Representative today. Visit www.advocacy.myeloma.org
CURE. Participating in the M200 Challenge is easy: for every $200
and click on the Action Alert "Help Eliminate the Disparity in Coverage for
you give or raise, you will be entered in a drawing to win a fabulous
Chemotherapy" under the Issues & Legislation tab.
vacation getaway for two, for 7 days and 6 nights, at the beautiful Four
Become an IMF advocate to stay informed of
Seasons Costa Rica at Peninsula Papagayo. The prize includes airfare
critical issues affecting the myeloma community
on American Airlines and a $400 gift certificate toward spa treatments.
and legislation at both federal and state levels to
To participate, all you have to do is register online at M200.myeloma.
help resolve them. Make a positive change in your
org or contact Suzanne Battaglia at sbattaglia@myeloma.org or
life and the lives of ALL cancer patients in the US.
800-452-CURE (2873).
Sign up TODAY at advocacy.myeloma.org!
Teamwork makes everything possible. Start your M200 Fundraising
Team and help the IMF reach a goal of $200,000 raised for
How to contact the IMF Advocacy Team
our Research, Education, Support, and Advocacy Programs.
The M200 Challenge will continue until April 30, 2012.
Christine Murphy ­ Director, Government Relations
phone: 703-738-1498 fax: 703-349-5879
Anyone can participate, and by helping us
email: cmurphy@myeloma.org
reach our goal of $200,000 you help
ensure that everyone wins! mt
Arin Assero ­ Director of Advocacy
phone: 800-452-CURE (2873) ext. 232 fax: 818-487-7454
email: aassero@myeloma.org
M200
Meghan Buzby ­ Grassroots Liaison
phone: 410-252-3457 email: mbuzby@myeloma.org
m200.myeloma.org
email: mbuzby@myeloma.org
16
myeloma.org

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Member Events
imfers raise funDs to benefit myeLoma community
By Suzanne Battaglia
IMF members are people like you, from across
IMF's Robin Tuohy attended the local MM support group meeting for
the country and around the globe, and many
the check presentation ceremony. When Robin asked Mario how he'd
are raising money for multiple myeloma (MM)
like to see the money he raised be directed, he simply said, "I'd like the
research and education programs that have an
money to support the search for a cure. I'm glad we could raise funds
impact on the lives of patients and family members
for the IMF's MM research program. Hopefully, we will find a cure in my
worldwide.
lifetime. Yes, my reasons for supporting MM research are very personal,
Being involved is very fulfilling and empowering.
but any advances we make will also help others who are dealing with the
Join us in our search for a cure for MM by organiz-
same disease."
ing an event in your community to raise public awareness and help those
Fall Bocce Classic
whose lives have been touched by this disease. Deciding what to do and
Dick Bloom was diagnosed with MM in
how to do it can be confusing, and that's where we come in. The IMF is
2008 as a result of routine blood tests.
here to help you every step of the way, making it as easy as possible for
"I was 61 years old and I had no idea
you to be involved!
that anything was wrong. I felt fine," said
Our FUNdraising program is fun and easy, and brings with it the satisfac-
Dick. "Since then, I've been on and off
tion of knowing that YOU have made a difference in many lives. Choose
different drug cocktails. In the meantime,
an established event model or create your own ­ no idea is too large or
I did a stem cell collection, just in case.
too small ­ and we provide you with the tools, assistance, and expertise
Otherwise, my wife Lisa and I try to live life just we did before. We spend
to make your event a success.
six months a year in Florida with our two sons and our grandkids. The rest
We are grateful to all who contribute their time, imagination, and hard
of the time, we live in Dayton, OH."
work to benefit the MM community. Join us in working together toward
Lisa Bloom is of Italian
our common goal... a CURE. Please contact me, Suzanne Battaglia, at
descent and is a member
sbattaglia@myeloma.org or 800-452-CURE (2873) to chat about any
of the Italian-American
ideas you might have. Be part of making miracles happen!
Club in Dayton. For years,
Here is a sampling of past events. . .
Dick has enjoyed the game
Car Raffle
of Bocce, an ancient ball
game played as far back as
Mario Bonacorsi was diagnosed
in the Roman Empire. In
with MM in 2006. "Two years later,
fact, at one point Dick ran
in 2008, I had an autologous trans-
an annual Bocce tourna-
plant," said Mario. "Unfortunately,
ment with more than 100 teams participating. "We are surrounded by a
the remission didn't last, so I had
community of caring people who have been very supportive of us, and
an allogeneic transplant in 2009.
Lisa and I decided that it would be a good idea to organize a one-day
Another bump in the road fol-
Bocce tournament, with the proceeds going to support the IMF and MM
lowed, but I'm doing well on my
research." That is how the Fall Bocce Classic was born.
current drug regimen." Mario is
Mario Bonacorsi presents
semi-retired, but has maintained a
On September 24, almost 90 players came together for the second annual
check for $8,000 to
part-time business of selling cars
IMF representative Robin Tuohy
Fall Bocce Classic to support the Bloom Family and the IMF. "Unfortu-
as well as locating cars for customers to purchase. As a member of the
nately, just before the event, a second member of our club was diagnosed
Barre Rotary Club in Vermont, Mario decided to organize a fundraiser that
with MM, and it started to hit home for a lot more people. There were now
united many of interests and benefited both local charities and the IMF.
two of us with this obscure form of cancer
so, in addition to fundraising, we placed
Mario found a sports car he felt would work for the fundraiser, a red
a lot of emphasis on raising myeloma
2004 Mazda Miata MX-5 Convertible. Together with friends and family, he
awareness."
sold 250 raffle tickets at $100 each and
raised an impressive $25,000. "Almost
Dick and Lisa plan to continue the Fall
everyone knows someone with cancer
Bocce Classic next year and hope to attract
so, even in this economy, people want
even more people to the tournament.
to help. We ended up selling raffle tick-
"Bocce is a very competitive game, but one
ets to people as far away as Colorado
of the neat things about it is that just about anyone can play: male, female,
and Georgia! After deducting costs, we
young, old. The winning team included a 12-year-old, and he was the one
were able to donate $5,000 to local
who won the very last game. The tournament is a great way to show sup-
charities and $8,000 to the IMF."
port for cancer research and have a lot of fun, too." mt
800-452-CURE(2873)
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International Myeloma Foundation
NON-PROFIT
12650 Riverside Drive, Suite 206
ORGANIZATION
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U.S. POSTAGE
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PAID
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(800) 452-CURE (2873)
PERMIT NO. 665
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Foundation
Myeloma
International
©2011,
U.S.A.in
Printed
Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
2012 IMF Calendar of Events
Feb 3-4
IMF Patient & Family Seminar ­ Boca Raton, FL
July 27-29
IMF Support Group Leaders' Annual Summit ­ Dal as, TX
March 23-24 IMF Patient & Family Seminar ­ Seat le, WA
Aug 10-11
IMF Patient & Family Seminar ­ Los Angeles, CA
May 3-6
Oncology Nursing Society (ONS) annual conference ­
Oct 13
6th Annual Comedy Celebration ­ Los Angeles, CA
New Orleans, LA
Dec 8-11
American Society of Hematology (ASH) annual meeting ­
June 1-5
American Society of Clinical Oncology (ASCO) annual meeting ­
Atlanta, GA
Chicago, IL
June 11-13
International Myeloma Working Group (IMWG) Summit I I ­
Amsterdam, The Netherlands
Additional events/meetings wil be posted in later editions
June 12
Robert A. Kyle Lifetime Achievement Award Dinner ­
of Myeloma Today as dates are finalized.
For more information, please visit myeloma.org
Amsterdam, The Netherlands
or cal 800-452-CURE (2873).
June 14-17
European Hematology Association (EHA) 17th congress ­
Amsterdam, The Netherlands
IMF­Latin America, IMF­Japan and IMF­Israel
events are not included above.

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