Myeloma
Today FALL2005
Volume 6 Number 6
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Highlights
Myeloma Research Update
PATHOGENESIS AND MAINTENANCE
OF MULTIPLE MYELOMA
By Diane F. Jelinek, PhD
Multiple myeloma
is
a
disease
characterized by
5
the significant accumulation
Ruben Niesvizky, MD
of malignant plasma cells
in the bone marrow. There
is a clear need to achieve
a better understanding of
the mechanisms underlying
myeloma
cell
growth
and survival control. It is
important to note that the
overall proliferative index
of this tumor is quite low
9
by comparison with other
Diane F. Jelinek, PhD Professor of Immunology
Neal Flomenberg, MD
malignancies. Thus, an
Mayo Clinic College of Medicine, Rochester, MN
equally important clinically
relevant aspect of myeloma cell biology is the mechanisms that underlie malignant
plasma cell resistance to apoptosis leading to prolonged survival and tumor cell
accumulation. Our current lack of knowledge concerning this process in myeloma
is paralleled and amplified by our current lack of insight into signals that regulate
survival of normal bone marrow resident, long-lived plasma cells. Therefore, it
PLEASE SEE PATHOGENESIS AND MAINTENANCE PAGE 34
LOOKING FOR A LOCAL MYELOMA SUPPORT GROUP?
23
Robert A. Kyle presents
If you are interested in joining an existing group or starting a new group in your area,
Kenneth C. Anderson with
please contact Andy Lebkuecher, Director of Support Groups at
the Third Annual Lifetime
imfsupport@charter.net or call him at 404-353-7127
Achievement Award.
This issue of Myeloma Today is supported by:
Celgene Corporation and Millennium Pharmaceuticals.
International Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Michael B. Bell
Benson Klein
Dr. Gareth Morgan
Susie Novis
E. Michael D. Scott
Mark DiCicilia
Dr. Robert A. Kyle
Dr. Gregory R. Mundy
Matthew Robinson
R. Michael Shaw (ex officio)
Michael S. Katz
Isabelle Lousada
Charles Newman
Richard H. Saletan
Allan Weinstein
Dr. Edith Mitchell
John L. Salter
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Daniel Bergsagel, CANADA
Ian Franklin, SCOTLAND
Ian MacLennan, ENGLAND
Y.C. Chen, REPUBLIC OF CHINA
Tadamitsu Kishimoto, JAPAN
James S. Malpas, ENGLAND
Scientific Advisors
Raymond Alexanian, USA
Dorotea Fantl, ARGENTINA
Antonio Palumbo, ITALY
Kenneth C. Anderson, USA
Rafael Fonseca, USA
Linda Pilarski, CANADA
Michel Attal, FRANCE
Gösta Gahrton, SWEDEN
Raymond Powles, ENGLAND
Hervé Avet-Loiseau, FRANCE
Morie A. Gertz, USA
S. Vincent Rajkumar, USA
Bart Barlogie, USA
John Gibson, AUSTRALIA
Paul Richardson, USA
Régis Bataille, FRANCE
Hartmut Goldschmidt, GERMANY
Angelina Rodríguez Morales, VENEZUELA
Meral Beksac, TURKEY
Jean-Luc Harousseau, FRANCE
David Roodman, USA
William Bensinger, USA
Vania Hungria, BRAZIL
Jesús San Miguel, SPAIN
James R. Berenson, USA
Sundar Jagannath, USA
Kazuyuki Shimizu, JAPAN
Leif Bergsagel, USA
Douglas Joshua, AUSTRALIA
David Siegel, USA
Joan Bladé, SPAIN
Michio M. Kawano, JAPAN
Seema Singhal, USA
Mario Boccadoro, ITALY
Henk M. Lokhorst, THE NETHERLANDS
Bhawna Sirohi, ENGLAND
J. Anthony Child, ENGLAND
Heinz Ludwig, AUSTRIA
Alan Solomon, USA
Raymond L. Comenzo, USA
Jayesh Mehta, USA
Pieter Sonneveld, THE NETHERLANDS
John Crowley, USA
Håkan Mellstedt, SWEDEN
A. Keith Stewart, CANADA
Franco Dammacco, ITALY
Giampaolo Merlini, ITALY
Guido J. Tricot, USA
Faith Davies, ENGLAND
Gareth Morgan, ENGLAND
Benjamin Van Camp, BELGIUM
Meletios A. Dimopoulos, GREECE
Gregory R. Mundy, USA
Brian Van Ness, USA
Brian G.M. Durie, USA
Amara Nouel, VENEZUELA
Jan Westin, SWEDEN
Martin M. Oken, USA
Headquarters
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Vice President, Operations
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Hotline Coordinator
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Associate Director, Development
Nancy Baxter (nbaxter@myeloma.org)
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Hotline Coordinator
Publications Editor
Director, Medical Meetings & CME Programs
Debbie Birns (dbirns@myeloma.org)
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2 2
www.m
w.ye
m lyoem
loa.
m o
a r.g
org
Place
Scientific ho
& lder
Clinical
MAKING CLINICAL TRIALS MORE PATIENT-FRIENDLY
A Special Report by The Unknown Patient
All new cancer drugs must be proven safe and ECOGiscurrentlyconductingatrialtestingthenew
effective in clinical trials before they can be
agent Revlimid®. However, the Myeloma Committee
made available to patients. At the 2005 IMF
designed this trial to go beyond the question of whether
Support Group Leader Retreat, IMFer and leader of
Revlimid is a safe and effective front-line treatment for
the Manhattan and White Plains (New York) myeloma
myeloma. (Further information about this trial can be
support groups, Mike Katz, facilitated a focus group
found at http://e4a03.myeloma.org.)The trial is asking
on patient concerns and preferences relative to clinical
two questions that are very important to patients:
trials. Many issues previously Unknown to your reclusive
author were discussed at this session and I thought it
· If Revlimid does not work, will thalidomide work?
would be helpful to put some of them on paper.
· When given with Revlimid or thalidomide, will a lower
dose of dexamethasone (40mg, given 1 day on, 7 days
Clinical trials are very important to patients. Without
off) be as effective as the standard dose (40 mg, given
clinical trials, there could be no new drugs approved for
4 days on, 4 days off)?
the treatment of myeloma. When a promising new drug
comes out of the laboratory, it must be tested in people
This trial design received rave reviews at the 2004 IMF
via clinical trials. Clinical trials are conducted under very
Support Group Leader Retreat. It was approved by the
strict ethical standards, with many layers of scientific and
NCI in record time and is enrolling patients faster than
regulatory review. As a result, they are very expensive and
original projections. It is an example of a "patient-friend-
time-consuming to conduct. In recent years, patients
ly" trial in that it asks questions important to patients
have been brought more and more into the design pro-
and is actually testing the efficacy of potentially less
cess, which is very good news.
toxic treatments (Revlimid versus thalidomide, lower-
dose versus standard-dose dexamethasone.) Traditionally,
IMFer Mike Katz is co-chair of the Patient Representative
trials used "maximum tolerated doses" to maximize the
Committee at the Eastern Cooperative Oncology
possibility of a positive result for the treatment being
Group (ECOG) and the liaison to ECOG's Myeloma
tested, often in support of drug approval applications.
Committee. This committee is co-chaired by Dr. Phillip
Greipp (Mayo Clinic) and Dr. David Vesole (St. Vincent's
Having Mike Katz on the Myeloma Committee and
Comprehensive Cancer Center).
having the Myeloma Committee participate in a focus
group with the IMF Support Group Leaders clearly
ECOG has conducted many important cancer clinical
played a part in making this trial design more "patient-
trials. It is a cooperative group, funded by the National
friendly." ECOG has been a pioneer in this area. Mike
Cancer Institute (NCI), and its trials are available to
and his co-chair, Mary Lou Smith, sit on the ECOG
patients via hundreds of participating treatment centers.
Executive Committee, which reviews and approves all
ECOG's Myeloma Committee recently concluded a trial
trial concepts.
proving the safety and superiority of thalidomide and
dexamethasone versus dexamethasone alone. This trial
At this year's IMF Support Group Leader Retreat, the
was cited in the "Approvable Letter" issued by the FDA
Myeloma Committee once again participated in a focus
in response to Celegene's submission of thalidomide.
group discussion with the attendees. The discussion first
The FDA said that it expected to approve thalidomide
covered general issues that the support group leaders had
after the results of this trial are submitted. The trial has
with myeloma treatment and clinical trials, including:
already had a profound impact on patient care, with the
· Whether to have a stem cell transplant and the
thalidomide/dexamethasone combination all but replac-
appropriate timing
ing VAD (vincristine, Adriamycin, dexamethasone) as
· If and when stem cells should be harvested if not
the standard front-line treatment for patients planning a
having a transplant
stem cell transplant.
PLEASE SEE CLINICAL TRIALS PAGE 11
800-452-CURE (2873)
3
Table of Contents
Scientific & Clinical
Pathogenesis and Maintenance of Multiple Myeloma
1
Making Clinical Trials More Patient-Friendly
3
MOZOBILTM, a Potential New Agent for Stem Cell Harvesting
5
VELCADE® phase III trials
8
Insights into New Multiple Myeloma Treatment
9
Supportive Care
IMF Hotline Coordinators Answer Your Questions
12
The Multiple Myeloma ListServe
13
Education, Advocacy, Awareness
Profile of Robin Tuohy
14
Sixth Annual Support Group Leader Retreat
15
IMF Around the Globe: Israeli Association of Myeloma Patients
17
South Florida's Dynamic Duo: Cindy Feltzin
and Vicki Anderson Ferraro
18
IMF Around the Globe:
The Greater Montreal Multiple Myeloma Support Group
20
Fundraising
IMF Honors Kenneth C. Anderson, M.D.
with the Robert A. Kyle Award
23
Rocking in Rhode Island
24
Katie's Birthday Charity Bash
24
Patient Perspectives
Numbers Don't Lie, or do they?
25
One Day at a Time...for 18 Years
26
Member Events
4th Annual MMAMM Benefit
28
Gary C. Heuer, Jr. Memorial Golf Tournament
31
Holiday Gift Ideas
Shopping for the Holidays and the Cure
31
IMF Board Member Interview
Interview with Benson and Carol Klein
32
Letters to the IMF
Note from Australia
33
Dear Reader
Letter from Susie Novis, President
36
IMF Calendar
2005
April 8 Japan/SWOG USA Clinical Summit Meeting
December 10-13 ASH Atlanta, GA
April 19-23 SWOG The Grand American Hotel, Salt Lake City, UT
2006
April 27-30 Scientific Advisory Board Retreat
January 26-29 IMF Board Retreat Ojai Valley Inn, Ojai, CA
May 4-7 ONS New Orleans, LA
February 10-11 P&F Seminar Sir Francis Drake Hotel,
May 18-21 Support Group Leaders Retreat
San Francisco, CA
June 2-6 ASCO Atlanta, GA
February 16-20 Annual Bone Marrow Transplant Mtg, Honululu, HI
June 15-18 EHA Meeting Amsterdam
March 14-15 Advocacy Days Washington, DC
June 23-25 ECOC Washington, DC
March 24-25 Bart Barlogie Clinical Conference South Beach, FL
October 4-8 SWOG Sheraton Seattle Hotel & Towers, Seattle, WA
March 31-April 1 Ft. Lauderdale P&F Seminar Wyndham Hotel
October 14 Ribbon of Hope Gala Los Angeles, CA
April 1-5 AACR Meeting Washington, DC
December 8-12 ASH Orlando, FL
Other events/meetings will be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or call 800-452-CURE (2873).
IMF(Japan) and IMF(UK) events are not included above.
4
www.myeloma.org
Scientific & Clinical
MOZOBILTM, A POTENTIAL NEW AGENT FOR STEM CELL HARVESTING
An interview with Neal Flomenberg, MD
What is the idea behind stem
marrow growth and function. In
cel transplantation for multiple
order to perform a PBSC transplant,
myeloma?
one must collect stem cells that will
be used to restart the marrow after
A peripheral blood stem cell (PBSC)
the transplant. The more stem cells
transplant is commonly employed in
you transplant, the faster you restart
the treatment of myeloma. It is a pro-
the marrow, and the shorter the
cedure used to restore the immune
period of vulnerability.
system of myeloma patients who
have had high-dose chemotherapy
How would you compare the colony-
treatments that previously destroyed
stimulating factors that are currently
their immune cells. The idea behind
used and MOZOBILTM (AMD3100)?
transplant is that it allows one to
treat more intensively than one could
Colony-stimulating factors such as
in the absence of a transplant. Many
G-CSF (filgrastim) induce the mar-
chemotherapy drugs suppress some
row to grow, while MOZOBIL is a
of the faster-growing cells in the
new agent that aids in releasing stem
body, of which the bone marrow is
Neal Flomenberg, MD
cells into circulating blood where
Director, Bone Marrow Transplant Program
one. When the bone marrow is sup-
they can be collected by a process
Thomas Jefferson University
pressed, you cannot make certain
Philadelphia, Pennsylvania
called apheresis.
blood components because the mar-
row is the "blood factory." A low white count puts you
What is MOZOBIL's mechanism of action?
at risk for infection; a low platelet count puts you at risk
for bleeding. Most people can tolerate low blood counts
MOZOBIL inhibits the chemokine receptors that act
for short period of time, but the longer such conditions
as "anchors" holding these baby cells to the marrow.
last, the more vulnerable one becomes to these side
Alternatively, you can think of this "anchoring" as two
effects. So, after high doses of chemotherapy completely
sides of a piece of Velcro, or a lock and key. MOZOBIL
destroy the marrow and, hopefully, the myeloma cells
disrupts this action, and it does so directly, as opposed
as well, the re-infusion of these "baby cells" restarts the
to the indirect effects of G-CSF. The effects of G-CSF
are not seen for 4 or 5 days. The effects of MOZOBIL
are seen much more quickly, in 4 to 6 hours, reflecting
the fact that the cells aren't just growing, but also being
released. It may be that these complementary effects are
why the combination seems to be more effective than
either of the drugs alone.
Has MOZOBIL been studied as a single agent?
MOZOBIL Mechanism of Action
It is currently being studied as a single agent in a Phase II
By blocking CXCR4, a specific cellular receptor, MOZOBIL
triggers the rapid movement of stem cells out of the bone
clinical trial. Also, it is being used in addition to one of
marrow and into circulating blood. Once in the circulating
the current standards of care. In Europe, Phase II trials
blood, the stem cells can be collected for use in stem cell
are ongoing to evaluate MOZOBIL in combination with
transplant. Stem cell transplant is a procedure used to restore
the immune system of cancer patients who have had treatments
that previously destroyed their immune cells.
PLEASE SEE MOZOBIL PAGE NEXT PAGE
800-452-CURE (2873)
5
Scientific & Clinical
MOZOBIL -- continued
different stem cell mobilizing regimens, including chemo-
combination has shown potential to help more patients
therapy.
collect more cells and improve the transplant procedure.
The use of MOZOBIL increased the number of stem
Can you tell us about MOZOBIL's clinical development?
cells in peripheral blood and also reduced the number of
apheresis sessions required for patients to reach the target
In Phase I clinical trials, researchers test a new drug or
number of stem cells collected.
treatment in a small group of people for the first time
to evaluate its safety, determine a safe dosage range, and
Five of the patients who received G-CSF alone and
identify side effects. In Phase II clinical trials, the study
failed to collect, were then successfully able to mobilize
drug or treatment is given to a larger group of people to
enough stem cells with a combination of G-CSF and
see if it is effective and to further evaluate its safety. In
MOZOBIL. Four of the patients who were successfully
Phase III clinical trials, the study drug or treatment is
given a combination of G-CSF and MOZOBIL initially,
given to large groups of people to confirm its effective-
afterwards failed to collect with G-CSF alone.
ness, monitor side effects, compare it to commonly used
treatments, and collect information that will allow the
Up to 65% of transplant patients have poor or sub-
drug or treatment to be used safely. MOZOBIL's clini-
optimal mobilization using G-CSF alone, and there
cal program is designed to evaluate its ability to improve
are no medical guidelines to predict which patients will
overall transplantation procedure by increasing stem cells
respond poorly to G-CSF mobilization. These patients
available for transplant.
may require additional mobilization sessions to achieve
a sufficient collection for transplantation. Patients trans-
Can you describe the study design and how each patient
planted with a sub-optimal number of cells can experi-
was able to be his or her own control?
ence a delayed recovery of their immune system, and are
at greater risk for infection and may require additional
Each patient got mobilized twice, first either with G-
days of antibiotics, blood transfusions, and extended
CSF alone followed by G-CSF and MOZOBIL com-
hospitalization. MOZOBIL possibly allows for a more
bined, or vise versa. There were approximately 2 weeks
rapid collection of a larger number of stem cells from the
of rest between the two mobilizing approaches. Who
peripheral blood. Larger stem cell doses for transplanta-
got mobilized with which approach first was decided
tion are correlated to faster recovery times.
by a "computer coin toss." That way, the results were
not biased in favor of either approach. Scientifically,
At this time, I am very upbeat that MOZOBIL has
we thought that this was a more precise way to do the
the potential to become part of the standard of care
study. Controlled trials are more convincing than stud-
for myeloma. Of the 25 patients treated, 9 could not
ies that do not use a control, and allow investigators to
have been transplanted with G-CSF mobilization alone.
get a better handle on the effectiveness of the drug when
Other patients in the study were able to save one or
studying a smaller group of patients. While a Phase II
more days of apheresis due to the use of the G-CSF
trial is not as definitive as a randomized Phase III trial
and MOZOBIL combination. Approximately 84% of
with hundreds of patients, I do think that it gave us far
patients treated derived benefit form the combination,
more information than we would have had if we only
and that's a very substantial improvement.
mobilized with a combination and not studied how these
same patients did with G-CSF alone.
Blood published Phase II data in September 2005, and
we will report new Phase II data at the American Society
What did the data from your Phase II trial show?
of Hematology (ASH) conference in December 2005.
Based on Phase II results, as well as historical data from
A combination of MOZOBIL and G-CSF is better
standard stem cell mobilization regimens using G-CSF
than G-CSF alone to mobilize and collect the optimal
alone, a Phase III clinical trial initiated patient enroll-
number of stem cells for autologous transplantation. The
ment in January 2005.
6
www.myeloma.org
Scientific & Clinical
What about side effects?
Editor's Note: For additional MOZOBIL Phase III study
information, please visit www.ClinicalTrials.gov and use
The side effects profile is very good. There have been
identifier NCT00103662.
very few serious side effects, and none of them could be
related to MOZOBIL they occurred during or after
transplant, well after MOZOBIL was administered, or
Phase III study sites in the U.S.
they occurred during mobilization with G-CSF alone,
before MOZOBIL was ever administered. The fairly
· City of Hope, Phoenix, Arizona
mild and brief side effects we've seen include discomfort
· Myeloma Institute for Research and Therapy,
at the site of the injection, pins and needles in the fingers
Little Rock, Arkansas
and toes, and GI upset.
· Rocky Mountain Cancer Center, Denver, Colorado
· Yale University School of Medicine,
What can you tell us about the Phase III trial?
New Haven, Connecticut
· H. Lee Moffitt Cancer Center and Research Institute,
This study is intended to determine whether the combi-
Tampa, Florida
nation of MOZOBIL plus G-CSF is better than placebo
· Loyola University Medical Center, Maywood, Illinois
plus G-CSF. One of the Phase III studies being con-
· Indiana Blood and Marrow Transplantation Center,
ducted is exclusively enrolling several hundred myeloma
Beech Grove, Indiana
patients (see list of U.S. centers below). This study is
· University of Iowa, Iowa City, Iowa
randomized, double-blind, placebo controlled, com-
· Fairview-University Medical Center,
parative. To be as scientifically rigorous as possible, and
University of Minnesota, Minneapolis, Minnesota
to avoid any bias, the Phase III study is only enrolling
· Mayo Clinic, Rochester, Minnesota
patients undergoing the stem cell collection process for a
· Washington University School of Medicine,
transplant for the first time.
Saint Louis, Missouri
· Kansas City Cancer Center, Kansas City, Missouri
What about patients who have previously failed to collect
· The Cancer Center at Hackensack University Medical Center,
enough stem cells for a transplant?
Hackensack, New Jersey
· University of Rochester Medical Center,
AnorMED, the pharmaceutical company developing
Rochester, New York
MOZOBIL, has a compassionate use program that
· Roswell Park Cancer Institute, Buffalo, New York
might be available to patients who have already attempt-
· Duke University Medical Center, Durham, North Carolina
ed mobilization and were not successful.
· Cleveland Clinic Foundation, Cleveland, Ohio
· Oregon Health & Science University, Portland, Oregon
What are your thoughts about PBSC transplant for
· Hospital of the University of Pennsylvania,
myeloma as opposed to standard therapy?
Philadelphia, Pennsylvania
· University of Texas Health Science Center,
There have been some randomized studies, which have
San Antonio, Texas
suggested that there are more patients disease-free at
· Texas Transplant Institute, San Antonio, Texas
later time points in their illness with PBSC transplant
· Utah Blood and Marrow Transplant Program,
than with non-transplant therapies. But this is a moving
Salt Lake City, Utah
target because new agents continue to become available
· Virginia Commonwealth University, Richmond, Virginia
for treatment within and outside the transplant setting.
· Fred Hutchinson Cancer Research Center,
Fortunately, there is much progress being made in the
Seattle, Washington
field of myeloma. MT
· Thomas Jefferson University, Philadelphia, Pennsylvania
800-452-CURE (2873)
7
Scientific & Clinical
VELCADE® PHASE III TRIALS
VELCADE® (bortezomib) for Injection
analysis of time to progression (50% of progressive
VELCADE® (bortezomib) for Injection is currently
disease events). At termination, a final statistical analy-
approved in the United States and more than 50
sis was performed. Survival advantage maintained
countries worldwide for the treatment of patients
despite at least 44% of dexamethasone patients cross-
with relapsed and refractory multiple myeloma. The
ing over to VELCADE prior to early study closure.
timetable for clinical development and approval of
VELCADE was unusually rapid; the FDA granted
Of 333 patients on the VELCADE arm, 315 were
approval for U.S. marketing just over four and a half
evaluable for response. Of 336 patients on the dexa-
years after the first patient received VELCADE in
methasone arm, 312 were evaluable for response.
a clinical trial. VELCADE is the first treatment in
Complete response (CR) required 100% disappear-
more than a decade to be approved for patients with
ance of the original myeloma protein from blood
myeloma.
and urine on at least 2 determinations 6 weeks apart
by immunofixation, less than 5% plasma cells in the
VELCADE is proteasome inhibitor. The proteasome
bone marrow, stable bone disease, and normal cal-
is an enzyme complex found within all cells. Many
cium. Near complete response (nCR) required that all
of the processes that rely on proteasome function can
CR criteria be met except that immunofixation was
contribute to the growth and survival of cancer cells.
positive. Partial response (PR) required greater than
VELCADE appears to induce myeloma cell death and
or equal to 50% reduction in serum myeloma protein
to inhibit myeloma cell growth and survival by acting
and greater than or equal to 90% reduction in urine
on the bone microenvironment. Due to the reversibil-
myeloma protein on at least 2 determinations 6 weeks
ity of proteasome inhibition with VELCADE, normal
apart, stable bone disease, and normal calcium.
cells can recover from its effects, whereas cancer cells
are more likely to undergo cell death.
VISTA Trial
Several Phase III clinical trials of VELCADE are
currently uderway. In January 2005, Millennium
Pharmaceuticals, Inc. announced the initiation of
VISTA (VELCADE as Initial Standard Therapy in
multiple myeloma: Assessment with melphalan and
prednisone), an open-label, randomized, multicenter,
international clinical trial of VELCADE in combina-
tion with melphalan and prednisone versus melphalan
and prednisone in patients with newly diagnosed mul-
tiple myeloma who are not transplant candidates.
The VISTA study is designed to assess efficacy, overall
safety, and tolerability of the combination regimen
APEX Trial
compared with melphalan and prednisone alone. "The
The results of the phase III APEX clinical trial dem-
frontline data seen to date have been very promising,
onstrated a statistically significant survival advantage
and we are eager to explore the potential of VELCADE
of VELCADE versus a standard therapy (high-dose
in combination with other therapies so that we may be
dexamethasone). Early closure was recommended by
able to offer new options for patients in need," said
an independent data monitoring committee at interim
CONTINUES ON NEXT PAGE
8
www.myeloma.org
Scientific & Clinical
INSIGHTS INTO NEW MULTIPLE MYELOMA TREATMENT
Revlimid study tops list of investigations that may benefit patients
By Ruben Niesvizky, MD
Introduction
development of new therapeutic regi-
mens for multiple myeloma.
The Multiple Myeloma Program at
NewYork-Presbyterian Hospital/Weill
While dexamethasone alone has a
Cornell Medical Center, one of the larg-
response rate of approximately 50%,
est myeloma programs in the United
a protocol called BLTD (Biaxin, low-
States, is forging ahead with a number
dose thalidomide, and dexamethasone)
of clinical and basic science investiga-
has yielded a response rate of 93%
tions that may yield promising new
and a complete remission rate of 13%
treatments for patients. The Multiple
in recent clinical studies. The BLTD
Myeloma Program includes a clinical
protocol was pioneered by Dr. Morton
trial of a unique combination regimen
Coleman.
including Revlimid® (lenalidomide),
a new thalidomide analogue that has
Ruben Niesvizky, MD
These studies, presented at the ASH
already shown promising activity in a Director, Multiple Myeloma Program and ASCO meetings, confirmed the
NewYork-Presbyterian Hospital/
variety of hematologic malignancies.
Weill Cornell Medical Center
initial observation by Dr. Brian Durie
New York, NY
and others that Biaxin contributes to
Promising New Treatments
tumor mass reduction in patients with
myeloma and Waldenström's macroglobulinemia.
Recently, the Multiple Myeloma Program has generat-
ed a considerable amount of excitement by launching
In order to further our understanding of these find-
a study evaluating a combination regimen, known as
ings, we recently randomized patients to receive
BiRD, that includes the antibiotic Biaxin® (clarithro-
either low-dose thalidomide plus dexamethasone or
mycin), Revlimid, and dexamethasone. The BiRD
dexamethasone alone. Patients without a satisfactory
regimen represents an important next step in the
response (<50% drop in tumor mass) were started
on Biaxin. Figure 1 illustrates several patients
resistant to either T or LTD and how tumor
mass significantly declines immediately after
the initiation of Biaxin. The addition of Biaxin
to this regimen seems to dramatically improve
both response rate and time to response, even in
patients who were previously unresponsive to D
or LTD. Whether this effect is solely a pharma-
cokinetic effect, or involves other cellular targets,
remains to be determined.
While acknowledged to be much more potent
than its parent drug, thalidomide, Revlimid
Figure: Biaxin contributes to tumor mass reduction
CONTINUES ON NEXT PAGE
in patients receiving Dexamethasone
800-452-CURE (2873)
9
Scientific & Clinical
INSIGHTS INTO NEW TREATMENTS -- continued
avoids many of thalidomide's side effects. We hope
to launch the expanded access protocol for Revlimid
that the BiRD combination, by replacing thalido-
in the relapsed setting. Investigators are also evaluat-
mide with Revlimid, will improve patient safety while
ing SGN-40, a humanized anti-CD40 monoclonal
maintaining the favorable patient outcomes seen with
antibody, and are evaluating a new class of drugs called
BLTD. We fully anticipate that Revlimid will achieve
histone deacetylase inhibitors in three separate proto-
an impressive complete remission rate, therefore allow-
cols. Together, these six protocols cover a wide range
ing patients to achieve long-term survival. We have
of patients.
recognized the challenges of the use of this drug alone
or in combination and we have observed the benefits
Our goal is to expand our understanding of myeloma,
of aspirin in preventing serious thrombotic events. We
to improve treatment and, ultimately, to find a cure.
have submitted our data to the upcoming ASH meet-
In order to do that, we must translate research from
ing and we will be presenting in a dedicated session.
the bench to the bedside, and likewise, from the bed-
side to the bench. We need to investigate treatments
Multidisciplinary Research Effort
for myeloma patients in every stage of the disease. My
colleagues include Dr. Selina Chen-Kiang, an immu-
The BiRD study is just one of several ongoing clinical
nology and cell cycle expert who is currently focused
trials in which Multiple Myeloma Program investiga-
on elucidating the molecular basis of myeloma, Dr.
tors are playing a major role. In particular, our inves-
Roger N. Pearse, expert in the field of cell biology, Dr.
tigators have already initiated a clinical trial of consoli-
Hearn J. Cho, an immunology expert, and Dr. Scott
dation therapy or second-line treatment for myeloma
Ely, an expert in pathology. We collaborate with a full
with dexamethasone plus VELCADE® (bortezomib)
team of expert scientists and physicians who meet
for Injection, as preamble for an autologous stem cell
regularly to share new ideas and communicate find-
transplant. The program at Cornell is one of the first
ings in multiple myeloma. MT
VELCADE TRIALS -- continued
David Schenkein, MD, vice president, clinical oncol-
EVEREST Trial
ogy development, Millennium.
Millennium is also conducting a multicenter Phase
IV clinical trial known as EVEREST (Evaluation of
The primary study objective is to determine whether
VELCADE Employed as Retreatment for Efficacy,
the addition of VELCADE to standard melphalan
Safety, and Tolerability). This study is designed to
and prednisone therapy improves the time to disease
assess M-protein response in patients who have previ-
progression in patients with previously untreated
ously responded to VELCADE and relapsed following
myeloma. The secondary study objectives are to deter-
a treatment-free remission. Because there is no known
mine overall survival, progression-free survival, time to
mechanism of resistance to VELCADE and no new
response, CR rate and overall response rate, duration
cumulative toxicity with extended therapy, it is hoped
of response, and safety. Approximately 680 patients
that retreatment with VELCADE will be beneficial.
will be enrolled in 21 countries.
NOTE: For more information about VELCADE® (bortezomib) for
Injection clinical trials, patients and physicians can visit www.mil-
lennium.com or call the Millennium Medical Product Information
Department at 866-VELCADE.
10
www.myeloma.org
Scientific & Clinical
CLINICAL TRIALS -- continued
· Whether there are better therapies than stem cell
to a medication that might be needed more
transplants that patients would be forgoing by tracking
urgently later on in the disease progression?
into a front-line transplant program
· A number of concepts for front-line trials were discussed.
· What the alternatives to a stem cell transplant are
The group strongly encouraged the Committee to
consider designs that used newer, less toxic agents than
· How to sort through all of the available combination
thalidomide, the feeling being that patients need not be
therapies available today, both in terms of effectiveness
subjected to thalidomide's side-effects and risks if there
of treatment as well as side effects/risks
were better alternatives available
· General frustration with continued role of high-dose
· A concept for a consolidation therapy trial was
dexamethasone in so many treatment regimens and
discussed:
trials, given the side effects
ß Consolidation therapy is given after the myeloma
· Concerns about wasting time with drugs/treatments
has been driven into remission by another therapy.
that don't work
For example, transplant is a consolidation therapy,
· Concerns that patients are being steered into clinical
as it is given after another therapy has driven the
trials without being told what the alternative standard
myeloma into remission.
treatments would be
ß The group was receptive to the trial concept, as they
· Feeling that the informed consent forms for clinical
had been when an earlier version was discussed with
trials are too long and too hard to understand
them at the 2004 retreat. It was felt to be a good
· Insurance coverage issues often influencing choice to
alternative for people who did not want do pursue
enter clinical trial based on availability of free drug,
transplant immediately after front-line therapy.
leading more people with insurance issues to enroll
People also liked the idea of having their stem cells
harvested early in the process, as this was part of the
· The need for more information on alternative/
trial design.
complimentary therapies, such as curcumin, particularly
ß There was concern about the specification of double
for MGUS and smoldering patient who have no
transplant as the salvage regimen (to be used if
imperative for standard treatment options but are
the patient relapsed after consolidation therapy).
looking to do something
However, the Myeloma Committee representatives
· The need for better pain management services
explained that the salvage regimen was not part of
The next part of the discussion focused on clinical tri-
the trial protocol and did not necessarily have to be
als designs being considered by ECOG for the future.
a tandem transplant or even an auto transplant.
While confidentiality issues prevent discussion of the
details of those designs, there were some general conclu-
The attendees felt empowered to be able to engage direct-
sions worth sharing:
ly in the design process and the Myeloma Committee
· In discussing potential trials for patients with
was grateful for their input. It does no one any good to
Smoldering Myeloma, the group saw the following
go through the time and expense of opening clinical tri-
pros/cons but felt it was worth having trials available
als that are not attractive to patients.
for patients who were anxious to do something beyond
"watchful waiting":
The success of the Myeloma Committee Focus Group
ß Pros: Opportunity for a patient who feels like there's
paved the way for a recommendation that annual patient
a "time bomb" in his/her body to participate in a
focus groups be incorporated into the NCI's Blueprint
trial that would allow one to do something to stop
for a Redesigned National Clinical Trials system. This
it from "exploding"
recommendation was presented to the National Cancer
ß Cons:
Advisory Board and accepted for implementation. So,
· Why should patients take a drug with possible
the myeloma community has once again led the way,
side effects and risks when they are symptom free
setting an example for how to get things right in cancer
and feeling well?
treatment and research. MT
· Why should a patient risk developing a resistance
800-452-CURE (2873)
11
Supportive Care
IMF HOTLINE COORDINATORS ANSWER YOUR QUESTIONS
The IMF Hotline 800-452-CURE (2873) is staffed by Nancy Baxter, Debbie Birns, and Paul Hewitt.
The phone lines are open Monday through Friday, 8am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
Question: I have been diagnosed with a solitary plasma-
Adjuvant Therapy
cytoma of the bone. What is it? And what is the likeli-
Adjuvant therapy is a term used to describe additional
hood that I will develop multiple myeloma?
therapy such as chemotherapy, steroids, thalidomide,
or alpha-interferon after radiation. Studies done in the
Answer: A solitary plasmacytoma of the bone (SPB) is
1980s and 1990s evaluating the benefit of post-radia-
defined as a collection of malignant plasma cells found
tion therapy with various chemotherapies in an effort to
in a single location in the bone without evidence of dis-
reduce the chance of, or time to, new disease were incon-
ease elsewhere. If, in fact, you have a true
clusive. The prevailing view at this time
SPB, your chances of cure with radiation
is that adjuvant chemotherapy should not
(3500 cGy) therapy are quite good. When
be given for patients with SPB. However,
a patient is treated with attempted cura-
bisphosphonate therapy can be considered
tive radiotherapy for a SPB and then goes
to help heal the bone that was damaged by
on within a few years to develop multiple
the plasmacytoma.
myeloma (MM), the major reason for this
failure is that the patient had underlying
Follow-up
MM all along and did not have a true SPB.
Even in the absence of adjuvant therapy for
Thus the failure was not that of the radia-
SPB, patients should be monitored regular-
tion therapy, but that the patient was not
ly. It may take up to a year (or occasionally
Paul Hewitt
accurately diagnosed.
even longer) for the effects of the radiation
therapy to be fully demonstrated in drop-
Diagnosis of SPB
ping monoclonal protein levels. During that time, you
In the past, it has been difficult to assess whether a patient
and your doctor should determine a schedule of visits
who presents with what appears to be a SPB actually has
every 2 or 3 months to evaluate your status. As time
some small or hidden amount of systemic myeloma.
goes on, if you remain disease-free, this schedule can be
Blood work can determine the amount, if any, of the
lengthened to, for example, 4-6 month intervals. Such
myeloma protein. A high amount of such protein would
close monitoring will allow the doctor to find any sign of
point towards the presence of MM. The term MM is
a recurrence or development of MM at an earlier point
used if there is, in addition to a plasmacytomata, an
when treatment options are greater.
increase in plasma cells in the routine bone marrow. The
patient should be checked for other relevant indicators of
Likelihood of Curing SPB
MM, such as low hemoglobin, elevated serum calcium,
As stated above, the important issue is accurate diagno-
and elevated serum creatinine. Another important diag-
sis. Local control of an SPB has been achieved in about
nostic factor is the presence or absence of other bone
90% of cases. Disease-free survival of 10 years has been
lesions. In the past, a skeletal survey was used to make
reported to be from 16% to 46%, depending on the
this determination. However, negative skeletal surveys
study. This discrepancy is most likely a result of the fact
alone cannot rule out other bone lesions because such
that not all of the patients in each study had true SPBs,
surveys are not sufficiently accurate. With MRI and/or
but rather had underlying MM. There have also been
FDG PET scanning, doctors can better determine if the
studies looking at what prognostic factors can be identi-
patient has more wide-spread marrow involvement. The
fied that will predict which patients will be cured and
absence of such involvement after these more sensitive
which patients will ultimately relapse and develop MM.
tests would give the doctor (and patient!) more confi-
The following factors have been identified in at least one
dence that there is no occult MM.
study as increasing the likelihood of relapse: osteopenia
PLEASE SEE HOTLINE PAGE NEXT PAGE
12
www.myeloma.org
Supportive Care
THE MULTIPLE MYELOMA LISTSERVE
by Nancy Baxter
Many patients and caregivers do not live close to a
called osteonecrosis of
myeloma support group. Those who might have a sup-
the jaw. In July 2005,
port group conveniently nearby may find that the group
the results of this study
meets at a time when they are working, busy with family
were reported in the
obligations, or when they are just too tired to get in the
New England Journal of
car and drive. Others just don't like talking face to face.
medicine. The remark-
Whatever the reason, the IMF has, for many years, pro-
able group thus not only
vided an alternative source of information and support
helps each other directly,
to myeloma patients, caregivers, friends, and family.
but has also added to
the body of knowledge of
The Multiple Myeloma ListServ affectionately called
an important issue facing
"The List" by its 1500 members was founded by
many myeloma patients
Nancy Baxter
Michael Katz, an IMF Director, and June Brazil, a
today.
myeloma patient. At a time when the number of in-per-
son myeloma support groups was nowhere near the over
Joining this group couldn't be easier. Here's how:
140 groups that exist today, Mike and June sought to
1) Log on to the IMF website at
link myeloma patients via an e-mail discussion forum.
www.myeloma.org
2) Click on "Finding Support"
The List has created a true "cyber family" that includes
3) Click on "Online Group"
doctors and lawyers, construction workers and home-
This will lead you to a web page where you can sign up
makers, teachers and salesmen, retired people, musicians,
to join the list.
writers, and others. Members of this diverse group share
their experiences, accumulated knowledge, and moral
List members are welcome to participate in discussions
support. They discuss everything from treatments and
or to simply avail themselves of the information being
side effects to family issues and useful tips about deal-
shared by others. If you are interested in researching a
ing with health insurance and improving relationships
particular topic, a searchable archive is also available,
with healthcare providers. The List has created countless
dating back to June of 1998. When posting an inquiry
friendships, often between people who have never met.
to the List, you will find that the responses you receive
are almost always compassionate, knowledgeable, and
Recently, List members have even participated in an
relevant. The List will probably be the best group you
IMF-led online study that looked at the possible link
never wanted to join! MT
between bisphosphonate use and a serious condition
HOTLINE -- continued
(reduced bone density, perhaps indicating early evidence
Overall Outlook
of MM), low levels of uninvolved immunoglobulins
As our understanding of how plasma cell cancers develop
(again, this probably means the patient actually had
increases, and as our ability to accurately diagnosis
occult MM at diagnosis), age over 60, and/or SPB on
and stage plasmacytomas and MM improves, doctors
axial (head and trunk) skeleton region. In patients whose
are better able to guide patients in making treatment
monoclonal protein persists after radiation therapy, the
decisions. MT
likelihood of relapse is greater; conversely, those whose
monoclonal protein disappears after local radiotherapy
are less likely to relapse.
800-452-CURE (2873)
13
Education, Advocacy, and Awareness
PROFILE OF ROBIN TUOHY
My family's journey through cancer began in September of 2000.
My husband, Michael, and I were enjoying a family vacation with
our children, Al ison and Mikey, then ages 7 and 2. On one of the
"kiddie" rides at Santa's Vil age, Michael experienced extreme
back pain. After numerous medical tests, we first heard the words
"multiple myeloma." Michael was 36 years old.
After the diagnosis, we were shocked, scared, and anxious.
Fortunately, we found the IMF and were impressed with the
extensive information and support provided by this organization.
In 2001, with the help of the IMF, Michael and I started the first
myeloma support group in Connecticut. After at ending the blood
cancer hearings in which Geraldine Ferraro announced that
she had multiple myeloma, we were further inspired to become
advocates for the myeloma community. Through our involvement
with the IMF and with our support group, we strive to reach out
to myeloma patients and their caregivers to help them bet er
Robin Tuohy and her family
understand this disease.
Earlier this year, Susie Novis invited me to work for the IMF as an assistant to Andrew Lebkuecher,
Director of Support Groups. I have truly enjoyed working at the IMF and building relationships
with other myeloma support group leaders, as wel as patients and caregivers. This job is more
like an act of love.
It has been my pleasure to visit myeloma support groups in Rhode Island, Pennsylvania, and New
Jersey; and I look forward to my upcoming visits to groups in New York, Vermont, and Ohio. If
you are interested in having me visit with your group, please contact me at Tuohy@snet.net or
203-206-3536. I am genuinely thankful to have the opportunity to help you, your family, your
support group, and the extended myeloma community.
Statistical y, cancer patients who at end support groups do bet er! If you do not yet belong to a
support group, let us help you find one in your area. Just contact me, or visit www.myeloma.org
and click on the "People Helping People" link.
I am sorry that your lives have been touched by myeloma. But, along with the rest of the IMF staff,
I take heart in doing my best to assist you in any way I can. Let's work together to find a cure,
while helping each another along the way on our journey through cancer.
14
www.myeloma.org
Education, Advocacy, and Awareness
SIXTH ANNUAL SUPPORT GROUP LEADER RETREAT
By Robin Tuohy
The word "Retreat" is defined in
various ways: (1) an act or process of
withdrawing especially from what is
difficult or dangerous, and also (2) a period of
group withdrawal for meditation, study, and
instruction under a director. Well, I would have
to say that the IMF's retreat is a combination
of both. Under the direction of our Untiring
Leaders, Dr. Brian Durie and Susie Novis,
we were well fed, thoroughly educated, and
delightfully entertained (not to mention
exhausted by Sunday)!
For those of you who have not yet had the
Another successful retreat for the Support Group leaders
pleasure of attending the Retreat, I can tell you
from the U.S. and Canada and IMF staff
that it is like a family reunion. As in our own
Our first presenter was Vicki Anderson-Ferraro, leader of
families, our "myeloma family" is one that we did not
the Miami Multiple Myeloma Networking Group. Vicki
choose but we care and want to help each other in our
spoke on "Starting and Maintaining a Support Group."
journey. To those with whom we have become close, we
There are many recipes for success and each leader needs
give hugs and catch up; to those we've just met, we give
to evaluate his or her own situation and assess the many
hugs and learn about each other. We are all together in
ideas shared to determine which ones would work best.
this with a common bond: multiple myeloma and how
Vicki discussed the importance of determining and
to fight the beast.
meeting the needs of the members, identifying co-lead-
The weekend began on Friday afternoon with Dr. Durie
ers, and developing partnerships with various organiza-
conducting an informative question and answer session
tions. Vicki left us with this question: If you don't know
with the leaders and detailing important support issues
what you want to accomplish, how will you monitor and
in 2005. We learned what the IMF has to offer to sup-
measure your progress?
port groups, and then launched into standard and new
Marcia and Jerry Sawyer, co-leaders with the North
diagnostic tests, updates on Revlimid®, VELCADE®,
Texas Myeloma Support Group, gave a presentation on
and AnorMed's new stem cell mobilizer, AMD-3100.
"Communications: Newsletters and Websites." Their
It was a total "A to Z" on myeloma from staging and
group uses a combination of a detailed website, new-
initial diagnosis to relapsed disease and what choices
comer packets, and newsletters. Additionally they now
we now have. We then enjoyed cocktails, dinner, and a
have a "patient voice mail" telephone number to enable
movie--"The IMF Research Initiatives" DVD--which
information seekers to contact them (972) 504-6307.
focuses on Bank on a Cure®, Circulating DNA, and
Check out their website at www.northtexas.myeloma.
Proteomics. Greg Brozeit spoke with us regarding advo-
org/newsletters.html.
cacy issues and how we can participate effectively. His
main message is that all cancer groups need to work
Chuck Koval, leader of the Madison, Wisconsin Support
together to get things accomplished in Washington.
Group collaborated with the Racine and Milwaukee sup-
port groups in a "Collective Group Seminar." This was
Saturday was jam packed with presentations. We were
the first of its kind: a statewide education day for mul-
told later in the day that there are only 1440 minutes in
tiple myeloma! The Madison, Racine, and Milwaukee
a day (and we used each one of them)! Susie began the
support groups were all involved in this project and
day with introductions and a heartfelt welcome.
PLEASE SEE SIXTH ANNUAL NEXT PAGE
800-452-CURE (2873)
15
Education, Advocacy, and Awareness
SIXTH ANNUAL -- continued
worked with various organizations to make it a suc-
To close the afternoon, we took a deep breath, and lis-
cess. They are already planning next year's event for
tened and interacted with Greg Pacini, a licensed profes-
November 5, so if you are in the area please stop by to
sional counselor. It is always a powerful thing when a
see what it's all about!
group trusts its members enough to communicate some-
how what is needed in the moment. Greg started out his
Mike Katz, co-leader of groups in Manhattan and White
agenda with an educational discussion on "Travel Tips
Plains, conducted a clinical trial discussion conference
for Couples on The Journey Beyond Diagnosis." That
call with ECOG Myeloma Committee Investigators
discussion led us to a cleansing of emotions; the perfect
(Drs. Phil Greipp, David Vesole, Morie Gertz, Rafael
ending to a long but inspirational day.
Fonseca, Vincent Rajkumar, Angela Dispenzieri, and
co-chair Mary Lou Smith). Currently, ECOG has more
After a fabulous dinner we were treated to the uplifting
than 90 active clinical trials in all types of adult malig-
words of Tom Bay. Having amassed 20-plus years of
nancies. The objectives of this session were to provide
interviews with individuals from all walks of life, Tom
patient perspectives on the most important questions
has distilled a list of 13 traits that winners all share. Tom
that need to be answered with clinical trials and to com-
feels that the IMF staff, patients, and caregivers are the
ment upon concepts for a potential trial currently under
personification of these traits. He tells us that we are the
discussion. We learned that it takes a long time to get a
"Eagles" that soar above the problems that the "Ducks"
trial designed, approved, completed, and analyzed so
quack about...! Here are Tom's 13 Qualities Winners
we want to get it right! This was the second year that the
All Share: Discipline, Self-Confidence, Progressive,
group participated in a clinical trial teleconference.
Decisive, Focused, Visionary, Lucky, Excels, Enthusiastic,
Purposeful, Empower, and Spiritual. Tom made us all
Dr. Dixie Esseltine from Millennium Pharmaceuticals
feel like "Eagles" (a bit tired, but still Eagles)! The eve-
updated us on the latest multi-center clinical trial with
ning ended with my husband, Michael Tuohy, playing a
VELCADE, which resulted in expanded FDA approval
song that he wrote for our children and donated to the
for Velcade as second-line therapy. She discussed the man-
IMF entitled "I'm Not Leavin'."
agement of VELCADE-induced peripheral neuropathy
and reviewed the research demonstrating VELCADE's
On Sunday we wrapped up the weekend with Dr. Durie
efficacy when it is combined with other drugs, par-
and Mike Katz providing us with an overview of osteo-
ticularly chemotherapy agents and dexamethasone. Of
necrosis of the jaws in myeloma. This is increasingly
particular note was the information that VELCADE
recognized as a complication of bisphosphonate therapy.
is effective even for patients who have chromosome 13
Based upon the responses to their web-based survey it
deletion.
was concluded:
· Duration of bisphosphonate use in myeloma and breast
Back for a second time was our friend Maureen Carling,
cancer is associated with increased risk of osteonecrosis
RN. Maureen commanded our attention right from the
(ONJ);
start. She spoke on a subject that most of us deal with
· 36-month estimates of ONJ are higher for Zometa
on a daily basis pain management. Pain in malignant
versus Aredia;
disease is common, yet in most patients pain can be
· None of the other therapies analyzed were associated
effectively controlled. For effective pain management
with increased risk of ONJ;
there are three basic things which must be done: assess-
· Patients with prior dental problems have a higher risk
ment, titration, and regular and frequent monitoring.
of ONJ.
She informed us that there are neurological receptors for
Please inform your dentist/oral surgeon if you are on
eight different types of pain, most myeloma patients are
bisphosphonates. For more information please go to the
experiencing at least four kinds of pain at once, and yet
IMF website at www.myeloma.org.
the most commonly given type of medication, opioid
therapies, affect only two types of receptors. Maureen
David Smith, Vice President, Operations, ended the
ended with this: Pain CAN and SHOULD be con-
morning with updates on Bank on a Cure® and a preven-
trolled. You have nothing to fear but fear itself!
PLEASE SEE SIXTH ANNUAL ON PAGE 21
16
www.myeloma.org
Education, Advocacy, and Awareness
IMF AROUND THE GLOBE: ISRAELI ASSOCIATION OF MYELOMA PATIENTS
By Paula Azulai
TheIsraeliAssociationofMyelomaPatients,also
known as AMEN, was founded to benefit the
welfare of myeloma patients in Israel. AMEN's
mission is to improve the quality of life of myeloma
patients by being a centralized source of information
about the disease, treatment options, and ongoing
scientific research, as well as offering support in dealing
with Bituah Leumi (Israeli Social Security), health
insurance companies, and patients' rights. AMEN is
dedicated to helping myeloma patients and family
members cope with the impact of diagnosis and the
ensuing issues. AMEN's Hebrew language website will
offer educational content, including translations of IMF
materials and publications.
(left to right) Prof. Gil Lugassy, Mrs. Paula Azulai,
On July 29, 2005, AMEN held the first meeting of the
and Prof. Aaron Polliack
Israeli Myeloma Working Group, which was sponsored
by Roche Pharmaceuticals. AMEN initiated the creation
(Tel Hashomer). The research program was presented
of the working group as a joint venture with the Israeli
by Dr. Cohen (Meir Center), Mrs. Neuman (Univeristy
Society of Hematologists. Chairing the meeting were
of Tel-Aviv), Dr. Gesundheit (Hadassah en Karem), Dr.
AMEN's Medical Advisor, Professor Aaron Polliack,
Bullvick (Laniado Hospital), and Prof. Berrebi (Kaplan
and the head of the Israeli Society of Hematologists
Medical Center).
and Blood Bank, Professor Gil Lugassy. Invitations were
sent to all the medical institutions in Israel that treat
Prof. Ben-Yehuda (Hadassa en Karem) was elected chair-
myeloma patients.
man of the Israeli Myeloma Study Group, Dr. Hardan
was elected secretary of the group, and Dr. Marilius has
The Israeli medical community responded favorably
been named its clinical research coordinator. The research
29 representatives from the most important medical
group will be headed by Mr. Zion Katz (Ichilov Medical
and research centers attended the meeting. Never before
Center) who will organize scientists from the Weizman
has there been a forum of this size addressing the issue of
Institute, local universities, and medical research centers
myeloma in Israel! Without a doubt, this can be seen as a
dealing with myeloma. Many other physicians registered
breakthrough in the history of myeloma in Israel.
to take part in the group's activities.
At the meeting, the participants addressed the following
This forum has the power to create a new and better
four topics:
future for the myeloma community in Israel,
1. Establishment of a registry
and AMEN has made it a priority to raise the necessary
2. Establishment of a computerized database
funds to support the group as part of its mission to find
accessible by all medical institutions
a cure for myeloma. MT
3. Basic research
4. Clinical research
EDITOR'S NOTE: AMEN was founded by Paula Azulai, a myelo-
ma patient, who is now the chairperson of the organization. For
more information, please contact Paula at appaul@attglobal.net
The registry and database topics were presented by Dr.
or 0544-906635.
Marilius (Zamenhoff Clinic) and Mr. Edelist (AMEN).
The clinical study program was presented by Dr. Hardan
800-452-CURE (2873)
17
Education, Advocacy, and Awareness
SOUTH FLORIDA'S DYNAMIC DUO:
CINDY FELTZIN AND VICKI ANDERSON FERRARO
By Cindy Feltzin
I met Vicki in 2001 at a Wellness Community luncheon.
Immediately, we had something in common... multiple
myeloma. As a caregiver for my husband, Bob, I was tak-
ing a crash course in myeloma as Bob began his chemo
(VAD) and radiation treatments.
It seems that every day I would have a new concern or
question, or even a tearful moment, and I would find
myself reaching out to the IMF Hotline. A cheerful voice
agree to expand her visit to cover both support groups.
would always welcome my call and respond to my needs.
I didn't know it at the time, but I was already in train-
Our group's focus is to empower myeloma patients and
ing to become head cheerleader of the Miami Multiple
caregivers with as much support, information, and edu-
Myeloma Support Group. The IMF had put me in touch
cation as possible. I am happy to offer encouragement
with Ed Blumenthal. A caregiver, Ed organized a Miami
and Bob is very good at handling calls and emails that
support group and ran it until his wife passed away. But
are too technical for me. We have formed relationships
Ed still maintained a list of the group's past members.
with a number of people strictly via phone and email,
Together, he and I culled the list, made the phone calls,
and we consider them to be full-fledged members of
and welcomed the past members into a reorganized
the group. As winter approached, we have welcomed a
group, which Bob and I would run.
number of "snowbirds"* from other parts of the coun-
try to our group, and I encourage all members of the
When Vicki retired from her position in the Federal
myeloma community to join us when they come to
Reserve, she had more time to help Bob and me with
South Florida.
the Miami support group. In 2003, when Bob and I
moved to West Palm Beach, Vicki took over the respon-
NOTE: Cindy and Bob Feltzin can be reached at felcinbob@aol.
sibility of running the Miami group. Vicki's professional
com or 561-624-8888.
expertise and leadership skills have helped this group to
reach a new level of excellence. She writes a very detailed
By Vicki Anderson Ferraro
monthly newsletter and stays in touch with her members
My entire working career was with the Federal Reserve
by phone and email. And she always has a hug to wel-
Bank. From the mid-1990s until I retired in 2003 I
come each person at her meetings. I am thrilled that the
served as an official in the Retail Payments Office of
Miami group is in such capable hands.
the Federal Reserve System, with responsibility for the
As Bob and I settled into our new home, our passion
Automated Clearinghouse (ACH) product development
for MM education continued. Committed to starting a
function. It was an exciting, one-of-a-kind job that
myeloma support group near our new home, we began
required extensive domestic and international travel and
to collect names of South Florida patients. On May
there was intense pressure and lots of long hours.
6, 2005, with the invaluable assistance of Millennium
In 1999, after being anemic for a long time, my pri-
Pharmaceuticals representative, Rick Sulak, we put the
mary care physician referred me to a hematologist. I
group on the map!
was told that I had MGUS. Although the doctor said
Rick helped secure our first speaker, Joe Tarriman, RN,
that he wanted me to have a bone marrow biopsy, I just
and we had 30 people gather for our group's first meet-
never got around to doing it because I was traveling so
ing! When Vicki secured Maureen Carling, RN, to
much. Several months later, I became very ill while out
speak to the Miami group, Bob and I offered to provide
of the country on business. When I returned to the US,
Maureen with transportation and lodging if she would
I went to the emergency room, with extreme fatigue
18
www.myeloma.org
Education, Advocacy, and Awareness
and back pain my primary complaints. I was diagnosed
was so dynamic and passionate about obtaining knowl-
with Stage 3 multiple myeloma. After a few days in the
edge related to myeloma, which included traveling to
intensive care unit and several more days in the hospital,
many seminars and speaking to experts about the dis-
I returned home to recuperate.
ease. I liked Cindy immediately and wanted to provide
any assistance I could. When Cindy and Bob moved to
I took a two-month leave but, being a workaholic, I
West Palm Beach in April 2003, I assumed responsibility
couldn't wait to get back to the office. I wasn't going to
for leading the Miami support group.
be a "sick person" or let myeloma interfere with my life.
In retrospect, getting back to work helped me cope with
The mission of our group is to provide education,
the diagnosis and prognosis of an incurable cancer. (Of
hope, and support in a caring environment to myeloma
course, now I have outlived all the statistics that I was
patients, family members, and friends. My initial goal
quoted at the outset!) During this time, a friend had
for the group was to have at least 10 people attend each
encouraged me to contact the IMF. I found the IMF
meeting. By the end of 2003, we far exceeded that goal
staff very caring and helpful and the information and
and were averaging 20 people per meeting. There was a
assistance that the IMF provided was invaluable.
core group of regular participants and friendships began
to develop. Everyone had a different story with myeloma
Facing a range of treatment options, I decided against
but we were able to share experiences and offer support
having a transplant. From my research, I learned that tha-
to one another, both in person and on the phone.
lidomide was being used with some success on refractory
patients that had failed all other treatments. I convinced
Every support group has a personality. Our group is a
my doctors to let me try thalidomide as frontline therapy
family. I want everyone who joins us to feel welcome,
and it worked
to feel safe, and to feel very hopeful. The Wellness
very well for me
Community has provided us with a wonderful meet-
for several years.
ing environment and an outstanding facilitator, Mae
In late 2002,
Greenberg. The local Millennium Pharmaceuticals rep-
my
myeloma
resentative, Norma Ortega, has been extremely support-
began to slowly
ive and has significantly contributed to the success of our
progress
and
group. She is personally engaged in my annual planning
I realized that
process. Based on feedback received from our members,
although I loved my work, the stress of long hours and
we develop a draft agenda for the year that is reviewed
constant travel were having an adverse effect on my
and approved by the members. Norma and Millennium
health. It was a very difficult decision but in February of
have generously assisted our group by bringing in
2003 I began an extended leave of absence, which even-
excellent speakers and sponsoring refreshments for the
tually led to retirement.
meetings, which take place the 4th Wednesday of every
month from 6 to 8 PM.
When I was first diagnosed, the IMF helped me locate a
myeloma support group, but it met in the afternoons so
I am very grate-
I was unable to attend meetings due to my work sched-
ful for the many
ule. The support group leader, Ed Blumenthal, kept in
wonderful rela-
touch with me via telephone and mailed me a wealth of
tionships
that
information. The group eventually became defunct but,
have formed as
in mid-2002, I received a flyer from the IMF announc-
a result of the
ing a new myeloma support group that was forming at
Miami support
the local Wellness Community.
group. Sadly, last
year we experienced our first losses and we still feel the
I first met Cindy Feltzin at an educational event spon-
void left by several long-time members. I am delighted
sored by the Wellness Community. Cindy sought me out
that their spouses still attend meetings on occasion. I
to tell me about her efforts to start a myeloma group in
keep in touch with them and assure them that they will
cooperation with Ed and the Wellness Community. She
PLEASE SEE SOUTH FLORIDA SG ON PAGE 21
800-452-CURE (2873)
19
Education, Advocacy, and Awareness
IMF AROUND THE GLOBE:
THE GREATER MONTREAL MULTIPLE MYELOMA SUPPORT GROUP
By Aldo DelCol
As The Greater Montreal Multiple Myeloma task.Wehadtofindavenue,securetop-notchspeakers,
Support Group approaches its first anniversary,
arrange for simultaneous translation, build an on-line
it is encouraging to review the progress that the
registration site, and find a camera crew. Of course, the
group has made since our first
most challenging task was to
meeting in November 2004.
get the members of the local
myeloma community to come
Over three years ago, when I
out in great numbers to this
was diagnosed with multiple
educational event.
myeloma, I felt frightened and
all alone. One of the first things
When I was told that an audi-
I did was to look for a local sup-
ence of 80 people would be
port group. Having many ques-
considered a good turnout for
tions and a thirst for knowl-
such a seminar, I thought this
edge, I desperately wanted to
a daunting objective. But the
learn from other patients' expe-
support group members worked
riences. Alas, no myeloma support group existed in
hard in promoting the event and, once again, serendip-
Montreal at that time. Thankfully, the Internet led me
ity came to our rescue. I received a phone call from one
to the International Myeloma Foundation. The IMF was
of Montreal's leading myeloma specialists, the head of a
the inspiration and motivation for the founding of the
stem cell transplant unit, enquiring about the group and
Greater Montreal Multiple Myeloma Support Group.
offering his assistance. He assisted us in promoting the
seminar not only to the patients but also to the nursing
In the Fall of 2004, when I decided to take the initiative
staff and social workers at his hospital. An article in the
to form a myeloma support group in Montreal, seren-
Montreal Gazette about our support group prompted
dipity stepped in to provide the necessary momentum.
even more interest and we quickly reached the maximum
I knew that I needed to work with a team that pos-
occupancy of the meeting room: 150 people.
sessed specific skills: communication, public relations,
legal knowledge, accounting, web design and, of course,
The seminar attracted people from as far as six hours
translation remember that Montreal is a bilingual city!
away by car. The speakers covered subjects such as the
Through a unique set of circumstances, all these resourc-
basics of myeloma, coping with fatigue and depres-
es came together and the group quickly took shape. Our
sion, stem cell transplantation, and novel therapies. The
website was created thanks to the financial assistance of
faculty consisted of myeloma specialists, researchers, a
Ortho Biotech. The support group was incorporated as
symptoms management nurse, and a psychologist spe-
Myeloma Canada, a federal non-profit organization. We
cializing in psychosocial oncology. Each of the speakers
created a flyer and began to spread the word to hospitals
was associated with a university and practiced in a teach-
and clinics.
ing hospital. We were also very fortunate to have Susie
Novis and Dr. Brian Durie lend additional "star quality"
The first meeting of the Greater Montreal Multiple
to the seminar.
Myeloma Support Group took place on November 2,
2004. The gathering drew fifty participants, including
Besides the educational presentations, the seminar also
patients, caregivers, and healthcare professionals. Given
offered information on the Bank On A Cure research
the success of the inaugural meeting, we decided to
initiative. Thanks to IMF's David Smith, plenty of "swish
organize a Patient & Family seminar, with the encour-
and rinse" kits were available and we managed to collect
agement and support of the IMF. This was no small
more than 40 samples from Canadian myeloma patients.
CONTINUES ON NEXT PAGE
20
www.myeloma.org
Education, Advocacy, and Awareness
I am very proud of what the Greater Montreal Multiple
nity. Already, an agreement in principle has been reached
Myeloma Support Group has been able to accomplish
on the structure and regional representation, and we are
since its inception. Although we are still faced with the
preparing to elect the Board of Directors and begin the
challenges of expanding the group in Montreal and across
task of developing a business plan.
the province, as well as locating a permanent home for
our meetings, we are moving forward with an ambitious
In closing, I would like to thank the Montreal Executive
plan for our second year. In addition to finalizing the
Committee, whose talents and dedication were instru-
speakers and topics for our group's regular meetings, we
mental in helping make this dream a reality, as well as
are also planning the second Montreal Patient & Family
the entire team at the IMF whose insight and encourage-
Seminar for 2006. Another objective is to mobilize the
ment continue to sustain the dream. MT
13 support groups across Canada to come together to
create a fully functional national organization to serve
Editor's Note: For more information, please visit the website
the particular needs of the Canadian myeloma commu-
www.myelomacanada.ca or you can email Aldo DelCol at
adc@videotron.ca.
SIXTH ANNUAL -- continued
tion grant from the Centers for Disease Control. Bank
and the under-insured. The IMF has made available on
On A Cure is the first international cooperative DNA
our website a video, brochures, and information. Again,
bank for genetic analysis to allow physicians to bet-
please contact David if you are interested in this out-
ter understand patient treatment response and to find a
reach program.
cure. Bank On A Care now has thousands of samples "in
the bank" and the IMF held a formal launch in NYC on
As the weekend came to a close, we were invigorated,
May 9th with Geraldine Ferraro. If you are interested in
inspired, and ready to go back to our groups and share
participating in Bank On A Cure, please contact David
our experiences. I wholeheartedly encourage each and
at dsmith@myeloma.org or 800-452-CURE (2873). As
every group leader, whether you are facilitating a new
for the Centers for Disease Control prevention grant,
group or an established group, to attend next year's
it is a three-year initiative to fund educational outreach
Retreat. I guarantee you will not only learn more about
that targets specific underserved populations who are
this disease but the friendships that you will form will
at high risk for hematologic cancers. It is up to each of
be invaluable. Please keep an eye out for next year's
us to help spread the word! We can do so by reaching
invitation to the Retreat and sign up early to attend.
out to African-Americans, the elderly, the uninsured,
Remember, Knowledge is Power! MT
SOUTH FLORIDA SG -- continued
always be a part of our group. We continue to welcome
Miami group meets Wednesday in the evening and the
new members and I am encouraged that we have had at
Palm Beach group meets on Thursday afternoon, which
least one new attendee at each meeting for the past few
has allowed us to invite speakers to address both support
months.
groups on consecutive days. Cindy and Bob are very gra-
cious hosts, and they have even provided transportation
My husband Dennis and I have become good friends
from Miami and opened their home to speakers. Like
with Cindy and Bob Feltzin. Last year, the four of us
Cindy, we welcome visitors and encourage all myeloma
traveled to Los Angeles together to attend the IMF Gala
patients, family members and friends to attend our
and take in some sights. Cindy planned a whirlwind
of activities while we were there and we had a fabulous
meetings if they are in town.
time. Cindy and I also work together to support and
NOTE: Vicki Anderson and Dennis Ferraro can be reached at
promote each other's groups. One successful strategy
vickiaferraro@bellsouth.net or 305-665-8284.
that we pursue is to share speakers when possible. The
800-452-CURE (2873)
21
2005 Robert A. Kyle Lifetime Achievement Award
PLATINUM SPONSORS
Peter S. Bing
Celgene Corporation
Richard Corman
Eli Lilly
Kosan Biosciences, Inc.
Millenium Pharmaceuticals, Inc.
Novartis Oncology
DIAMOND SPONSORS
Chiron Oncology
Dana Farber Cancer Institute
GOLD SPONSORS
Infinity Pharmaceuticals
Robert & Myra Kraft & Family
The Jerome & Kenneth Lipper Foundation
SILVER SPONSORS
The Binding Site, Inc.
Dean M. Boylan & Family
Jane & Robert Debaun & Family
The Feltzin Family
Nereus Pharmaceuticals
Diane & Abraham Sunshine
WE HONOR AND CELEBRATE DR. KENNETH C. ANDERSON
Henry W. Becker
Dr. & Mrs. Robert Goldstein
George E. Moore
Vicki & Rick Berdoff
Dr. Stephen Goldfinger
Elaine Nerzig
Estela & Andres Blei
Carol & Steve Goldschein
Network for Medical
Kathleen & James Bond
Tesair Lauve & John Grady
Communication
William Bones
Dr. Phil Griepp
The Redsox Foundation
Marilyn & Mortimer Buckely
Dr. David Hansen
Sharon & Charles Newman
Robin & Ted Brodie
Mervat & Matthew Hefez
Sandy & Hal Pinstein
Joann & Paul Burton
Rodger Hess
Elena Van Poznak
Toni & David Davis
Anne & Bob Hrabchek
Suzanne & Richard Saletan
Dr. Daryl Daughtery
Janette Hunter
Emily Sherwood
Priscilla Durkin
Martin Hurlich
Harold W. Schwartz
Bruce Eisen
Carol & Benson Klein
Marilyn & Sam Sloan
Dr. & Mrs. Patrick Enright
Rosemary Kotkowski
Claire & George Speen
Michael Feld
Dr. Robert A. Kyle
Hinda & Barry Simon
Janet & Jack Frawley
Joyce & Edward Linde
Lynne Stewart
Janet & Allan Gardner
Binette Lipper
Joan & Jerry Vandevoort
Margaret & M. Dozier Garder
Dr. & Mrs. Ralph Leibling
Charles Winer
Michelle & Charles Glasser
Howard Lefkowitz
Alred H. Wahlers
Marc Glinski
Terry Miller
Geraldine Farraro & John Zaccaro
Dr. & Mrs. Mel Goldstein
Faye Levine & Alvin Meisel
Susan & Robert Zeff
22
www.myeloma.org
2005 Robert A. Kyle Lifetime Achievement Award
IMF HONORS KENNETH C. ANDERSON, MD
By Candace McDonald
TheInternationalMyelomaFoundation(IMF) "Ken's work
honored Kenneth Anderson, MD, with the
in the field of
Robert A. Kyle Lifetime Achievement Award
myeloma
has
on Sept. 27, 2005 at the Harvard Club in Boston, MA.
helped
raise
Anderson is the director of the Dana-Faber Cancer
awareness
of
Institute's (DFCI) Jerome Lipper Multiple Myeloma
this
disease,"
Center and the Kraft Family Professor of Medicine at
said Susie Novis,
Harvard Medical School. Dr. Anderson was selected for
IMF president.
pioneering critical advances against multiple myeloma,
"His lab is one
leading not only to improved treatments but also to a
of the lead-
deeper understanding of how myeloma occurs at the
ing institutions
basic level of cells and genes.
moving myelo-
ma
research
Featured speakers at the event
forward
and,
included Edward Benz, M.D.,
for that, we are
Robert A. Kyle presents
Kenneth C. Anderson with the
president of the DFCI; Robert
proud to pres-
Third Annual Lifetime Achievement Award.
Kraft, owner of the NFL's
ent him with
New England Patriots; and the
this award."
Honorable Geraldine Ferraro,
myeloma patient and advocate;
The IMF established the Robert A. Kyle Award to honor
among others. The Master of
an individual whose lifetime body of work furthers the
Ceremonies was Steve Burton, a
ultimate goal of finding a cure for myeloma, and is
local Boston sports newscaster.
Speaker Honorable
named after noted physician and founder of the Myeloma
Geraldine Ferraro
and Related Diseases
Research
Group
at
the Mayo Clinic in
Rochester, Minn.
"It is a great honor for me
to follow in the footsteps
of Bob Kyle, a giant in
myeloma research, role
model, and dear person-
al friend," said Anderson
Kenneth C. Anderson, MD and
in accepting the award. the Honorable Geraldine Ferraro
"It was a wonderful and
loving celebration of researchers, clinicians, supporters,
companies, and most importantly patients and their
Robert A. Kyle, MD, IMF Chairman of Scientific Advisory Board,
families, all working together to give hope and health to
Susie Novis, IMF President,
myeloma patients everywhere." MT
Brian G.M. Durie, MD, IMF Chairman of the Board
800-452-CURE (2873)
23
Fundraising
ROCKING IN RHODE ISLAND
By Jason and Matthew Rossi
Ourmother,CarolMurray-Rossi,wasdiagnosed showcasedphotosandfilmclips.Guestspurchasedtickets
with multiple myeloma in 2003. But her personal
for drinks, raffle prizes, and fun contests a dunk tank
struggle with this disease did not stop her from
was rented for the evening! An outdoor bar was built, and
looking for ways to reach out and help
a life-sized cardboard cutout of Austin
others fighting myeloma. In April of
Powers was set up to help tend bar.
2005, she started the first myeloma
Our "bartender" was even equipped
support group in the state of Rhode
with recorded messages to greet the
Island.
guests. Groovy, baby!
It was time for us to step up and do our
This most dreadful disease managed
part. With the help of friends and fam-
to bring out the best in everyone who
ily, we worked for months to prepare
attended. As we celebrated our bonds
for the Rocking in Rhode Island party
Jason Rossi, Austin Powers,
of love and friendship, and our com-
Carol Murray-Rossi
to honor our mom and to raise funds
mon commitment and determination
to benefit the International Myeloma Foundation. Our
to win the fight against myeloma, the Rocking in Rhode
efforts paid off August 27th was a night to remember!
Island event succeeded in raising $1,587 to benefit IMF
programs and services while it also served to raise aware-
Local businesses donated many raffle prizes, including
ness of this disease.
salon and spa treatments, surfing lessons, restaurant din-
ners, theatre passes, and liquor store and grocery gift
The event was a group effort and we greatly appreciate the
cards. Our friends helped prepare food for the event and
assistance we received from so many supporters. Special
make a huge piñata. A tree-lined yard was transformed
thanks go to Andy Unger and Jeremy Furtado for their
into a great party environment, with outdoor "rooms"
hard work and dedication, and to the IMF for all they do
full of furniture set up on the grass and dining tables
for the myeloma community! MT
decorated with beautiful flowers. Large projection screens
KATIE'S BIRTHDAY CHARITY BASH
By Julie Smith
My mother, Frankie Reinhardt, was diagnosed Katie's birthday
with osteoporosis in August of 2004. She was 55
approached, she came to
years old. Mom had always taken good care of
me with an idea of how
her health, lifting weights at the gym three days a week and
she wanted to celebrate.
playing tennis. As her back pain progressed over the next
In lieu of birthday gifts,
two months, the doctor ran more tests and the diagnosis
Katie asked her friends
was changed from osteoporosis to multiple myeloma.
to honor her grand-
mother by donating
I did my best trying to explain the diagnosis to my chil-
Julie Smith, Frankie Reinhardt,
money to help cancer
dren. At 11, 4, 3, and 2 years old, all four were extremely
Katie Smith
patients. Katie's birthday
close to their grandmother, enjoying regular playtimes and
was turned into a surprise party for Nana, as well as a fund-
overnight visits with their "Nana." I told them that Nana
raiser for the IMF's myeloma research program. At "Katie's
had a disease in her body, and that the doctor advised that
Birthday Charity Bash," Katie and her friends were able to
she would no longer be able to lift them up.
raise $1,400 a big feat in a small town!
My eldest daughter, Katie, had a particularly close relation-
I am very proud of my daughter and her friends, and
ship with Nana. For six years, she had been my mom's only
grateful that Nana lived long enough to participate in this
grandchild and the two of them were the best of friends. As
joyful celebration." MT
24
www.myeloma.org
Patient Perspectives
NUMBERS DON'T LIE, OR DO THEY?
By Robert J. Heller
Inthebusinessworldwe'reoftentoldthatFigures AsIlearnedmoreaboutmyeloma,Ididbecomeaware
Don't Lie, but that Liars Can Figure. While that may
that some prognostic indicators may augur well or not so
be true in some scandalous incidents of corporate
well. A chromosome-13 deletion or Bence-Jones protein
wrongdoing, we who are cancer advocates also know that
prominence may be unwelcome. The blood panels and
while medical statistics don't lie, that they don't always
chemistries may point to strengths or weaknesses. The
portray the picture in a way that is most meaningful to
Kappa/Lambda light chain ratios may portend trouble,
the average patient.
although these are undoubtedly
the most difficult of all factors for
My wife, Phyllis, was diagnosed
us mere mortals to understand.
with advanced (Stage IIIB) mul-
tiple myeloma in May 2003.
What we in the myeloma commu-
The attending oncologist told
nity need to do is keep our minds
her at the very first meeting
concentrated on the fight. We
that the 2-year overall survival
can know one thing intellectually
(OS) rate was 40% and the
yet work on another model sub-
5-year survival rate was only
jectively. For most of us, fighting
20%. To have the prognostic
myeloma is like getting into the
stats presented in such a man-
ring with a professional heavy-
ner was devastating. I was fairly
weight boxer. We ask ourselves:
good in math when I was in high school and although I
How long will the fight last? How badly beaten up will
can't remember a cosine from a tangent, I can rationalize
we get?
what 40% means as a part of a whole.
But, while that intellectual model may seem depressing,
So I tried to explain to Phyllis that what she was being
we need to remember that the professional fighter is just
told was a simplification of the survival statistics that
using his same old tricks and that WE have an army of
amounted to an arithmetic mean average. She was
trainers and supporters working to help us beat the odds.
distressed, assuming that 4 out of 5 myeloma patients
That's what clinicians, researchers, and organizations like
would die within five years and that her chance of sur-
the IMF are working so hard for. And we in the myeloma
viving more than 5 years was but 20%. It was then that
community owe it to ourselves and to each other to keep
I explained that these numbers took in all patients who
on fighting. Don't get freaked by grand scale statistics.
ranged from very ill when diagnosed, to those who were
They don't apply to everybody. As a matter of fact, no
only slightly ill. It included patients of differing age,
statistic applies to an INDIVIDUAL patient.
physical status prior to diagnosis, and additional compli-
cations and prior conditions.
We didn't ask for the fight. But we're in the ring, so we
are going to give it our best shot. Phyllis has beaten the 2-
When you look at the raw data you see a continuum
year OS. In August, we celebrated our 50th Anniversary.
from those dangerously ill and previously undiagnosed
Now, we are thinking about what we want to do for our
patients who may expire within a matter of months, to
55th. We remember the words of Dylan Thomas: "Do
those who have been diagnosed, treated, and have sur-
not go gentle into that good night./ Rage, rage against
vived 10 or more years. In the case of my wife, she had
the dying of the light." MT
been a gym rat five days a week for more than 10 years
EDITOR'S NOTE: After a year of helping his wife fight myeloma,
prior to diagnosis. She was in excellent condition -- other
and compiling extensive notes on the disease, Robert Heller wrote
than the myeloma -- and had no other complications
Multiple Myeloma: The plain English Handbook for Patients and
that we knew of. So, I tried to explain that she had a
Care Givers, in the hopes that it may be of help to others on
lot going FOR her. She had a hard fight ahead, but she
their journey through myeloma. Bob can be reached via email at
COULD win and WOULD win.
morewords@comcast.net.
800-452-CURE (2873)
25
Patient Experience
ONE DAY AT A TIME... FOR 18 YEARS
By Carole Levis
IwasborninPennsylvania,andIhavelivedhereallmy In1989,afterabouttwoyearsofremission,myoncolo-
life. I raised my daughter, Deborah, and son, Kelly,
gist recommended a procedure that he called my "insur-
as a single parent. To support the family, I worked
ance policy" in case the disease came back. I was defi-
two jobs. During the day, I worked in an office. I would
nitely interested, but my insurance company would not
come home to have supper with my children, then head
cover bone marrow harvesting. My second husband and
off to my second
I fought and eventu-
job as a banquet
ally prevailed in having
waitress. When I
the procedure covered
turned 38, I decided
by insurance. I had 50
to go to cosmetology
holes drilled in each hip
school and, when
for a total of 100 aspira-
I completed the
tions.
course of study, I
got a part-time job
In May of 1992, my sec-
doing that. Back
ond husband died in my
then, things were
arms of a heart attack.
really tough, but we
He was 55 years old. We
managed to make it
had no idea that there
through.
was a problem with his
heart. I brought him
In 1987, when I was 43 years old, I started experiencing
back once with CPR but then lost him again. In the
severe pain in my shoulder blade. The pain was attribut-
ambulance, he came back once more but, by the time
ed to muscle spasms. But when I started having trouble
we arrived at the hospital, he had passed. It was a very
turning my neck, and losing control over my arms and
traumatic time. Shortly thereafter, I started experiencing
hands, I traveled to a neurosurgeon in Pittsburgh for
bone pain again, but the tests did not show any active
an evaluation. On December 3, 1987, I was told that I
disease. About two years later, in 1994, I bent over a
had a plasmacytoma wrapped around my spinal cord at
bathtub and my pelvis fractured. After a total of 8 years
the C7 vertebra of the neck. I was given 5 years to live,
in remission, I was facing aggressive myeloma. It was
a common statistic. That's when I said, "I don't live by
time to use my "insurance policy."
statistics. I live by the hand of God."
However, by this time, my bone marrow had been frozen
I had never heard of multiple myeloma. There were no
for over 6 years and frozen marrow was only known
support groups in the small rural area where I lived. I felt
to last for 3 or 4 years! so we were not certain if the
very isolated, and had to gather information wherever I
marrow that would be transplanted could still do its job.
found it. But I never asked why I only asked for the
After the transplant, I was in isolation for 25 days, facing
strength to carry me though the challenges I was facing.
a difficult recovery and an uncertain future. To make the
The night before the surgery to remove my tumor, the
most of my time during my hospitalization, I put my
doctor warned me that I might be paralyzed after the
cosmetology skills to use, working on wigs for cancer
procedure. But I was lucky and, after most of the tumor
patients. I also hosted a Superbowl party for the doctors
was successfully removed, I only needed to wear a neck
and nurses at the hospital. I was too busy being sick to
brace for six weeks while undergoing radiation. I was
eat the pizza and chicken wings that I had brought in,
able to achieve remission. That was a blessing.
but I was happy to see the staff enjoy themselves! It was
a difficult time but I tried to make the best of it.
26
www.myeloma.org
Patient Experience
In January 1995, when it came time to have the sec-
My second remission lasted for about 8 years, just
ond transplant, they had to drag me back kicking and
like the first, but the myeloma relapsed once again in
screaming. I still hadn't yet recovered from the first
January of 2005. In May, I started four cycles of Doxil
transplant! But I was told that two transplants would be
and VELCADE. I am now pain-free and my energy is
more beneficial and, eventually, I consented. The second
slowly coming back. I have been fortunate to work with
transplant was much harder on me than the first. After
a team of wonderful doctors and nurses. But, from my
21 days in isolation, I came home from the cancer center
experience, I would say that the most powerful tool in
only to find myself back at the local hospital, packed in
a cancer patient's arsenal is the mind when your body
ice to bring down a high fever. I vowed that if I would
is beaten down physically, you can push your mind to
just be given the strength to make it through, I would
keep you strong mentally while you face the challenges
give back of myself in any way I could. Within an hour,
life has given you.
my fever broke, and I was home shortly thereafter.
Over the past 18 (almost 19!) years, I've been sliced,
diced, hacked, whacked, chemo'd, and radiated so as to
Since then, I have been working on wigs for cancer
glow in the dark, yet I feel lucky and blessed in so many
patients. Helping women look good while battling can-
ways. When I was first diagnosed, my grandson was 4
cer helps them feel more comfortable and less isolated.
years old, and my goal was to live long enough to see
Every time I help someone with her hair and makeup,
him graduate from high school. He is now in law school.
and I see a smile... that's a blessing to me. I also try to
When I was diagnosed, my granddaughter had not yet
offer support on the phone and via email. Occasionally,
been born. She is now 10 years old, and my goal is to be
I get requests from the cancer center to come in and talk
around to see the woman she becomes!
with a patient who's having a hard time, and I am more
than happy to help. Perhaps because I felt so alone when
When I found the IMF, I really wanted to attend one
I was first diagnosed, I am absolutely obsessed with help-
of its Patient & Family seminars, but there was never
ing others.
one close enough to me. So I became involved with the
myeloma ListServ and joined the online chat group.
Every day of my life consists of something that has to
This year, when a friend volunteered to drive me to the
do with cancer. It's become a way of life. But the key
IMF meeting in Baltimore, I found myself in a room
word in that sentence is "LIFE." I look at my disease as
with over 200 others whose lives have been touched by
an inconvenience. But that's not the way it's always been
myeloma. I am just a regular person, taking life one day
for me. I remember coming home one day, ripping off
at a time, so I was very honored to be asked to join the
my wig, and just tossing it! The wig landed on the ceil-
seminar's Patient Panel, and grateful for the opportunity
ing fan, and I laughed until tears ran down my cheeks.
to offer encouragement to so many patients who are try-
Another time, while I was on a date on a golf course, the
ing to cope with grim statistics. In turn, the many won-
wind grabbed my wig. I started chasing the wig as it flew
derful people I met, both patients and seminar faculty,
and bounced all around the course. (In the meantime,
gave me great hope for a brighter future. There are so
my date was such a gentleman that he just kept hitting
many strides being made in the field of myeloma that I
those balls like nothing happened.) After I finally caught
look forward to the day when I can say, "I used to have
the wig, I called the beauty shop to tell them the story. I
a cancer called multiple myeloma." MT
started laughing, and everyone at the salon started howl-
ing with laughter. Sometimes you just have to find the
Editor's Note: If you wish to contact Carole, she can be reached at
humor in these things!
814-372-2428 or via email at meemmaw@webtv.net.
800-452-CURE (2873)
27
Member Events
4TH ANNUAL MMAMM BENEFIT KEEPS LEE GRAYSON'S MEMORY ALIVE
By Jenna Kern-Rugile
Sitting above a set of
Foundation by raising not just money, but
French doors inside
also hope, support, and awareness.
Tupelo
Honey,
a
landmark
restaurant
in
The tradition began on another steamy
the funky little town of
July day in 2002, when Lee gathered his
Sea Cliff, Long Island, is a
large group of friends from Long Island's
charming mosaic depicting
musician community to perform at the
a guitar-playing frog. The
first MMAMM benefit. It was an enor-
scene evokes smiles for the
mous effort for a man struggling in the lat-
legions of fans who spent
ter stages of myeloma, making its success
many Monday evenings
even more remarkable. Every year since,
listening to the music of
Tupelo Honey has served as host of the
Lee Grayson, the inspiration
MMAMM benefit, where musicians lend
for the colorful mosaic. Lee
their talents in celebration of their friend
had a true passion for the
Lee, and in an effort to help eradicate the
Muppets, and had adopted
disease that took his life. The event serves
Kermit as his virtual alter
as a fitting legacy for Lee, who spent many
ego. That's largely because
hours visiting (in person or by phone)
he admired in the Muppet character the same things
with other myeloma patients, lending a loving ear and
that others loved so much in Lee: his gentleness, quirky
helping hand.
humor, and great sense of curiosity about the world.
"In the first year of the benefit, everyone came to sup-
After a nine-year battle, Lee succumbed to multiple
port Lee, rallying around someone they loved so dearly,"
myeloma in the fall of 2002, at only 55 years old. His
recalls Naomi Margolin, Lee's girlfriend and the driving
signature song, the Muppets'
force behind the
"Rainbow Connection," was
last three benefits.
sung by all who attended his
"Now, people who
memorial. It was a bittersweet
never heard of him
moment, as friends bid good-
travel many hours
bye to a loving, talented man
to come to the ben-
who is still sorely missed today.
efit, because there
are so few events
Grayson'ssong,however,rangout
like this."
loud and clear on July 17, 2005,
a sultry New York day, as Tupelo
Lee, who never had
Honey once again hosted "A Lee
children, or a hit
Grayson Production: Multiple
song, or huge record
Musicians Against Multiple
deal, worried that
Myeloma (MMAMM)." This
his life would leave
year marked the fourth annual
no mark on the
MMAMM concert, which ben-
planet. But those
efits the International Myeloma
who knew him, and
28
www.myeloma.org
Member Events
even those who never had the blessing of
knowing him, feel his presence each year
at MMAMM. "Ask anyone who's come
to any of the benefits, and they all tell the
same story," says Naomi. "People can't get
over the healing energy, the support, the
love that's in the air. That's what Lee left
behind. That was Lee."
The musicians, restaurant staff, and all
the other volunteers close to 100 people
altogether freely give their time to
honor their friend and help raise funds
for the IMF. Tupelo Honey and its man-
ager, Willie Stephens, donate all the pro-
ceeds from the event to the IMF, while
the Village of Sea Cliff lends a hand by
myeloma patient and musician, played his song, "I'm
closing down the street for the day, making the benefit
Not Leavin'," which he wrote after his stem cell trans-
not only a concert but a street fair, with face painting,
plant in 2002. "It was our first year at the Multiple
drumming circles, and auctions. Profits from MMAMM
Musicians Against Multiple Myeloma event, and we
have grown each year, with this year's total at more than
were amazed at the amount of people and activities,"
$18,000, but its real benefits extend far beyond the
says Michael's wife Robin, who heads up a local support
financial ones.
group. "Everyone was there for a cause, but it was more
than that: It was fun and contagious
"Part of what I love so much about
and inspiring. What a beautiful and
this event is that, while most fund-
lasting tribute to Lee!"
raisers are about making money, this
one is about raising awareness," says
Manhattan resident, and myeloma
Naomi. While expensive dinners or
patient, Myrna Shinnbaum was par-
golf outings are the norm for many
ticularly moved by Michael Tuohy's
benefits, MMAMM costs $20 (a sug-
performance, and spoke to the father
gested donation) for an entire day
of three after he sang. "He said that
of music, conversation, information,
nothing would stop him from enjoy-
and connections.
ing his life, and that he is a fighter,"
says Myrna. "He went through all
"I spend more than half the day intro-
the treatments and is still here to tell
ducing patients and their families to
about it through his music and his
each other," notes Naomi, who hopes
songwriting." Myrna was introduced
to have a special tent set up at next year's benefit for
to many other myeloma patients, and met with an IMF
patients to network and possibly meet with an IMF
representative who told her about the foundation and
representative.
its programs, such as patient seminars and myeloma
support groups. "I had the greatest time," says Myrna.
This year, those people included the Tuohy family, who
"The music was incredible. You could not stop moving
drove several hours from Connecticut not only to attend
the event but to lend their talents. Michael Tuohy, a
PLEASE SEE MMAMM BENEFIT NEXT PAGE
800-452-CURE (2873)
29
Member Events
MMAMM Benefit -- continued
your feet, clapping your hands, and wanting to
dance in the aisles. It was like being at the best
open air concert."
Bob Romanoff, a Long Island resident who
was diagnosed with myeloma about four years
ago, found out about the benefit through an
ad in the local Pennysaver. He'd never heard
of the IMF before, or of MMAMM, which,
ironically, had been held for years just minutes
from his home. Now, he has the full support
of the IMF and its many resources, plus the
friendship and support of other patients he
met that day.
This year, one regular MMAMM attendee was
sorely missed. Sol Finkelstein, father of musi-
cians Steve and Lee, attended the first two
information about the disease, and the work of the IMF,
benefits in 2002 and 2003, but was too ill to make it the
and then spread the word."
next year. "I held up the phone so everyone could yell,
`Get Well Sol' to my Dad, who was in the hospital at the
Spreading the word about myeloma became a passion for
time," says Steve, one of Lee's closest friends. Sol passed
Lee Grayson in the years after his diagnosis. At one time,
away several months before this year's benefit took place.
Lee summed up the devastating effects of the disease
"Lee helped so much when my Dad was first diagnosed
succinctly, stating, "Myeloma Sucks." Each year, Naomi
with myeloma five years ago," says Steve. That's one
makes sure that a bucketful of pins with that expres-
reason Steve was so moved by an addition to this year's
sion (and Lee's attribution, of course) are handed out to
event: "Naomi hung a sign behind all the musicians that
MMAMM attendees.
read `Sol Finkelstein Memorial Stage'," says Steve. "It
brought tears to my eyes and joy to my heart."
"This year, when the IMF emailed support groups offer-
ing the remaining pins, it was inundated with requests
Steve's eight-year-old daughter, along with her cousins
from all over the world," says Naomi. Although people
and friends, got into the act this year, selling candy and
often offered money for them, she was happy to send
carrot sticks (the candy sold better). "They raised more
them for free. "I want this event to be about covering
than $100!" says Steve. "It was just another amazing part
the world with these pins, to help get the message out,"
of the day, which is such a positive celebration of life. It's
says Naomi. "Raising money is great, but raising aware-
a great way to gather people and increase their awareness
ness is what will foster the research and support to find
about this horrible yet little-known disease."
a cure."
Indeed, many people who attended the event and
One day, when a cure does come, Lee Grayson will
learned about myeloma for the first time ended up there
stand as a warrior who, though he lost his personal battle
virtually by accident. "People who happened to be driv-
against myeloma, helped win the war for those who
ing by stopped out of curiosity to hear the music and see
came after. And that's a mighty powerful legacy. Here's
what all the activity is about," says Naomi. "They got
to you, Lee. MT
30
www.myeloma.org
Member Events
GARY C. HEUER, JR.
MEMORIAL GOLF TOURNAMENT
SHOPPING
FOR THE HOLIDAYS AND THE CURE
By Nancy Heuer
Yes, it's that time of year, when we're all looking
at the calendar and counting up how many more
shopping days we have left until Christmas or
The4thAnnualGaryC.Heuer,Jr.MemorialGolf
Tournament was held on Saturday, September
Hannukah. Here's a way to make your already
10, 2005. The weather cooperated fully it
busy life less hectic. Just visit the IMF website
was a glorious day! The 140 golfers started out the
at www.myeloma.org and order the gift you
day's activities with
want! Clicking on the "Helping the IMF" tab,
breakfast at Craigie
then select "Shop For The Cure" on the left side
Brae Golf Course
of your screen. Shopping opportunities include
in N. Chili, NY.
retailers such as Barnes & Noble, Amazon.com,
Following
the
buy.com, FTD.com, and 1-800-Flowers.com, Lands'
exciting 18-hole
End, Macy's, Sharper Image, and Walmart, just
tournament, the
to name a few. When you access these retailers
event's participants
through the IMF website, a portion of all mon-
gathered
for
a
Tom DeMarco, Vicki Whiteside, Kevin
eys spent goes to benefit the IMF! Not only will
chicken barbecue
Cappotelli, Steve Cappotelli
you be saving money on gas by not driving from
at Freeman Park in
store to store, you'll be helping to raise money for
Mumford, NY.The tournament was a great success, raising
myeloma. Then click on the "Events" tab and
more than $5,000 to benefit the International Myeloma
scroll down through the items that are designed by
Foundation. Our
our IMFers, such as Pam Larsen's beautiful person-
deepest
thanks
alized key chains and earrings, Multiple Colors For
go
to
all
the
Multiple Myeloma, or Kristi Difford's gorgeous
sponsors, golfers,
personalized jewelry. You'll also find scenic cards
friends,
family,
designed by Irma Catlett and wine bottle "vests"
and
members
for dressing up that holiday gift. And of course,
of the business
there are the multiple myeloma wrist bands, which
community who
you can tie into your package ribbons, and the
contributed
to
Ribbon of Hope pin for giving the gift of hope.
the success of this
Back Row: Kim Strathearn,
Dawn McCullough, Missy Osborne
So start early, avoid the crowds while shopping
event. Join us again
Front Row: Gretchen Bailey,
from the comfort of your laptop, and be the
next year the 4th
Bobbi Jo Seaman, Tammy Keroack
first in your neighborhood to cross all those gift
Annual Gary C.
items off your list!
Heuer, Jr. Memorial Golf Tournament will be held on
September 9, 2006. MT
Ian Rowland, Jerry O'Donoghue, Matt Loughry,
Scott DiLiberto
800-452-CURE (2873)
31
IMF Board Member Interview
INTERVIEW WITH BENSON AND CAROL KLEIN
How did the two of you meet?
when I represent a client, I do not expect them to learn
Carol: We met in college. We married after I graduated
how to handle their case. I did try to do some reading
in the Summer of 1968. By that time, Benson had just
about myeloma but when I got to the part that average
finished his first year of law school. In
life expectancy was only 3 years, I
1969, our daughter, Lori, was born.
stopped reading.
Leanne was born in 1972. Benson
finished law school and went into
What treatment did you receive for
practice. I taught elementary educa-
your myeloma?
tion and got involved with volunteer
I received three rounds of VAD,
work. Our youngest daughter, Sarah,
followed by TBI (Total Body
was born in 1980.
Irradiation). In December of 1998,
I had the transplant at Dana-Farber.
When did multiple myeloma enter
Back then, going through a transplant
your lives?
was rougher than it is these days. One
Benson: Since the early 1990s, I've
Benson and Carol Klein
day, two of my doctors flew up to
with their grandchildren
had a problem with my lower back. In
Boston to see me. I thought that was
1997, I had a fall while playing tennis. The orthopedist
the greatest house call in the world! Later, I found out
took an x-ray, which revealed nothing, and told me that
that they came because they weren't sure that I was going
I must have pulled a muscle. In 1998, I met a friend for
to make it.
lunch and he didn't like the fact that I was still in pain.
Fred Smith, who happened to be an oncologist, insisted
Carol: But Benson never lost his sense of humor. He has
that I see a different orthopedist and have an MRI.
always tried to have a very positive outlook. Cancer did
Fifteen minutes after I left the radiologist's office, Dr.
not change that.
Smith called and asked me to stop by his office. This was
in April of 1998, and we were packing to take Sarah to
How did you find the IMF?
visit the college that she would later attend. I stopped by
Carol: I found the IMF on the Internet right after
to see Dr. Smith on the way to the airport and learned
Benson's diagnosis. I received the IMF InfoPack and
that the MRI had revealed a tumor on my spine. He
ordered the back issues of Myeloma Today.
thought that it was multiple myeloma. We were devas-
tated but needed to stay upbeat for Sarah's sake.
Benson: Then we called the IMF and asked if we could
help raise some money for myeloma research. I was tak-
When was the diagnosis confirmed?
ing dexamethasone and I couldn't sleep, so I would lie
Benson: Everything happened on a very fast track.
awake at night thinking about fundraising. And I had
The day we returned home, I had a CT scan, which
an idea. Since 1983, the comic strip "Crock" would
confirmed Dr. Smith's diagnosis. The next day, I saw a
occasionally feature a character named Trooper Benson.
radiation oncologist. The following day, I started radia-
I've been friendly with the strip's creators, Bill Rechin
tion on the tumor. We held family meeting, then we
and Don Wilder, since 1980. Bill and Don gave their
informed our friends, and then I shared the news with
permission for us to use the Trooper Benson character on
my office staff. Everyone was very supportive. I put
T-shirts and baseball hats. We distributed the hats and T-
together a team of doctors, and traveled to the Dana-
shirts, and Carol and I wrote a letter, asking our friends
Farber Cancer Center for a consultation. There, I met
to contribute to the cause that had become so important
one of my favorite people, Deborah Doss, RN, OCN.
to us. In 1999, Bill and Don ran another cartoon in the
We decided to proceed with the Dana-Farber protocol,
paper, and Carol and I sent out more letters. Over the
under the auspices of Dr. Smith.
years, we've written a lot of letters.
How did you educate yourselves about the disease?
Carol: Then, in 2002, we co-chaired the IMF Gala in
Benson: Carol did a lot of research. I did not want to
Washington, DC. And, this year, when Benson turned
know any of it. That's what doctors are for! As a lawyer,
CONTINUES ON NEXT PAGE
32
www.myeloma.org
IMF Board Member Interview
60, we had a big party and asked our guests to make
I don't think about my myeloma as much as I used to,
donations to the IMF in lieu of birthday gifts. We raised
and I keep myself busy.
over $11,000. So, over the years, through various fund-
Carol: Benson still works full time, and he is on the
raising ideas, we've been able to fund several $40,000
Boards of four foundations. He has a lot of energy!
myeloma research grants in Benson's honor. And, in
the next few months, we'd like to do another Trooper
Besnson: But I have a different outlook. I used to worry
Benson campaign and fund another research grant.
about the little things. Now, I only think about the
big picture. When I was diagnosed, my first question
Benson, how are you feeling these days?
to Fred Smith was, "Will I be around long enough to
Benson: I take Aredia once a month. I have arthritis in
see my grandchildren?" Now, we have four grandkids:
the area where the tumor was located, and in a few other
Lori's daughters Ava and Cecilia, and Leanne's daughters
spots. I have no myeloma symptoms. As a matter of fact,
Morgan and Sadie. I just love them! Lori and her family
when my orthopedist told me that my current back pain
live in town and we see Leanne and her family monthly.
is due to arthritis, I was so happy that I kissed him! Now,
And the big picture is just wonderful! MT
Letter to the IMF
From Australia
My wife Glenys and I are holidaying with our son and
All Americans must be affected by this natural disaster
daughter-in-law in Quensland. The climate is perfect
and wonder just how it has come to pass. I thought I
and our holiday is so enjoyable. We have completely put
should let you know that the Australian community is
thoughts of our common enemy to one side. It is just
also shocked by what is taking place and, for what it is
great. However, our state of relative euphoria is tempered
worth, our thoughts at this time are very much with you
by what we are watching on TV and reading in the local
and your families and colleagues all over.
press. The devastation in your country beggars belief.
Robert Moran
PATHOGENESIS & MAINTENANCE -- continued
one or more of these receptors are active as evidenced by
APRIL activation in malignant plasma cells. Finally, we
the ability of exogenous3 BLyS and APRIL to augment
are very eager to better understand how myeloma cells
myeloma cell growth and enhance cell survival. These
acquire the ability to express autocrine BLyS given its
observations, taking together with the striking effects of
ability to support myeloma cell survival. MT
BLyS on normal B cell maintenance and survival sup-
port the overall hypothesis that the BLyS/APRIL-TACI/
TERMS & DEFINITIONS
BCMA/BAFF-R ligand-receptor system may be involved
Autocrine Denoting a mode of hormone action in which it
in the pathogenesis and maintenance of multiple myelo-
binds to receptors on and affects the function of the cell type that
ma. In an effort to test this hypothesis, current work
produced it.
centers on a number of integrated projects. First, we are
HeterogeneousComposedofpartshavingdissimilarcharacteristics
or properties.
using a variety of methodologies to elucidate the precise
Exogenous
impact of BLyS and APRIL on both normal and malig-
Derived or originating externally; produced outside of
an organism, a tissue, or a cell.
nant plasma cell (myeloma cell) survival and growth. In
accompanying studies, we are characterizing the down-
Editor's Note: This research project is supported in part by an
IMF donation to the Robert A. Kyle Fund for Multiple Myeloma
stream signaling and genetic consequences of BLyS and
Research. As such, this project is subject to detailed peer review.
800-452-CURE (2873)
33
PATHOGENESIS & MAINTENANCE -- continued
remains unclear whether tumor cells undergo a specific
binds to TACI and BCMA. Although BAFF-R appears
transformation-associated biological change(s) to acquire
to be the primary receptor underlying BLyS-regulated B
this property, or whether they exploit and amplify
cell development and survival, the precise role that each
intrinsic tools, present in normal plasma cells, to ensure
receptor plays in normal B cell and malignant plasma cell
their survival.
biology remains unknown and is therefore the subject of
ongoing work in the laboratory.
Recent studies in my laboratory have identified a novel
pathway promoting enhanced survival of chronic B cell
Work thus far has taken advantage of the well-charac-
malignancies. We demonstrated that B lymphocyte stim-
terized panel of cytokine-responsive myeloma cell lines
ulator (BLyS), a member of the tumor necrosis factor
established in our laboratory over the past 10 years. Access
family, was expressed in an autocrine1 manner by some
to primary patient tumor cells has allowed us to make a
leukemic B cells as well as by some myeloma cells. This
number of observations. First, we have demonstrated
observation is of great interest because BLyS is critical for
that all of our myeloma cell lines express BLyS mRNA
maintenance of normal B cell development and homeo-
as do the majority of primary myeloma cells tested to
stasis and shares significant homology with a prolifera-
date. Moreover, we have been able to detect BLyS at the
tion-inducing ligand (APRIL). APRIL stimulates tumor
protein level. Because normal resting B lineage cells do
cell growth as well as proliferation of primary lympho-
not express BLyS, we believe this is a striking result and
cytes and is expressed by a variety of human cancers.
has direct clinical implications. Second, we have dem-
Three receptors for BLyS and APRIL have been identi-
onstrated that myeloma cells express a heterogeneous2
fied: B cell maturation antigen (BCMA), transmembrane
pattern of receptor expression for BLyS/APRIL and that
activator and CAML interactor (TACI), and BAFF-R.
Whereas BLyS binds to all three receptors, APRIL only
PLEASE SEE PATHOGENESIS & MAINTENANCE ON PAGE 33
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Dear Reader,
The IMF, along with researchers, physicians,
In all aspects of cancer research, knowledge is power,
patients, and industry leaders, is extremely excited
and the more you know about developments in
as we prepare for the annual American Society
myeloma research, the better equipped you are to
of Hematology (ASH) meeting, this
face this devastating disease. To that
year being held in Atlanta, Georgia on
end, please use all of the tools that the
December 10th through 13th. The ASH
IMF provides. If you do not already
meeting is the annual high point of the
subscribe to this publication, please
year in blood cancer research, and myelo-
call us at 800-452-CURE (2873) and
ma research is fast becoming the bellweth-
do so today! If you have internet
er for blood-cancer studies and treatment.
access, please visit our award-winning
The IMF, through our groundbreaking
website, and subscribe to our weekly e-
program, Bank On A Cure®, is at the
mail newsletter, the Myeloma Minute.
forefront of it all. This year, five abstracts
Our thorough catalogue of publica-
from Bank On A Cure research have been
tions is overseen by our chairman,
accepted at ASH, an impressive accomplishment.
Dr. Brian G.M. Durie, and our materials have prov-
The IMF will once again be on site at ASH conduct-
en to be the most informative and helpful resources
ing web interviews with leading myeloma clinicians
available. They can be viewed online or ordered
and researchers, capturing their first impressions and
directly through our website or by telephone. Lastly,
responses to the new data being presented. These
all of those who have called our toll-free hotline and
reports from ASH, bring you breaking news as it
spoken with Debbie, Nancy, and Paul know that we
happens. You can access this information by logging
are available to help you better understand myeloma
onto our website, www.myeloma.org.
research and treatment with the most up-to-date
information possible. Please tell those who may not
However, those of you familiar with the work of the
know about the IMF that we are available to assist
IMF should not be surprised by this announcement.
anyone touched by this disease.
Over the years, the IMF has awarded a total of 65
grants by means of the Brian D. Novis Research
We are here to help you in any and all ways possible,
Grant program, to clinical researchers around the
and look forward to reporting back to you about our
world. These grants are producing amazing results in
accomplishments and the important updates on the
the area of myeloma treatment as well as our overall
advances in myeloma research and treatment that
understanding of the disease. At the annual ASH
will be presented at this year's ASH conference.
meeting, the IMF announces the grant winners for
the upcoming year. Please look to future editions of
Best wishes,
Myeloma Today and to our website www.myeloma.
Susie Novis
org, for information about our newest awardees.
International Myeloma Foundation
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