AUGUST 2000
VOLUME 3 NUMBER 10
A PUBLICATION OF THE INTERNATIONAL MYELOMA FOUNDATION
Highlights:
Myeloma Today Profile: Prof. Hakan Mellstedt Page 1
Dear Reader,
New Insights and Future Directions Page 2
Novel Horizons for the Treatment of Myeloma Page 3
I am just back from the IMF's first
Support Group Leader Retreat and I have to
Report from a Myeloma Group Page 5
report that it was an amazing experience. Over
IMFers "Face" Cancer Page 6
the years, support groups for myeloma patients
IMF Hosts Think Tank 2000 Page 7
and their families have sprung up al over the
Patient Experience: Percutaneous Vertebroplasty & Lumbar Extension Treatment Page 9
world. Currently, there are over 50 support
Myeloma Support Downunder Page 10
groups in the US and an additional 21 in other
Emory Joins the Fight Against Myeloma Page 11
countries. It's clear that people with myeloma
want their own support groups.
These groups meet in a variety of
Myeloma Today Profile:
places: churches, hospitals, private homes, and at
the Wellness Community centers. Almost with-
o
out exception, either a patient or a caregiver leads
PROF. HAKAN MELLSTEDT
the group. Often, this person has no prior expe-
rience but is a very special individual who recog-
Myeloma Today: Prof. Mellstedt, please
two large university hospitals, the
nizes the need for patients to share experiences,
tell us where you did your training and
Karolinska Hospital and the Huddinge
knowledge and support. These leaders do an
how you became interested in myeloma?
Hospital, which are the clinical research
outstanding job, often coping with their own il -
Prof. Mellstedt: I had my training at the
facilities of the Karolinska Institute.
ness and treatment while they continue to provide
the leadership and guidance for their group.
Karolinska Institute in Stockholm,
The goal of the Support Group Leader
Sweden. I received my M.D. degree in
MT: You have a particular interest in
Retreat was to bring people together, to learn
1969 and completed my Ph.D. thesis in
immune regulated myeloma growth. How
from each other's successes, to share important
1974. The thesis was on myeloma and
did you become interested in this area,
information on a variety of topics - and to see
was also done at the Karolinska Institute.
why do you think it's important and what
how the IMF can be of help. Leaders from
I also have a certificate
is the latest progress?
groups al across the US and Canada were on
in internal medicine,
Prof. Mellstedt: I am a
hand for an intensive weekend. We learned how
and hematology and
tumor immunologist
to "Stop Smiling Start Kvetching" from Barbara
oncology. In 1969,
who started doing
Held, Ph.D., who has written a book on that
Raymond Alexanian
immunological studies
topic and taught us that it's OK not to always try
published his report on
in myeloma. My main
to keep the chin up or put on a happy face - in
fact it's good for us! There were workshops on
treatment of myeloma
interest has always been
fundraising, public awareness and advocacy -
using melphalan and
immunology in myelo-
both political and patient advocacy. The most
prednisone and I was
ma. I was the first to
intensive session, "How to Be a Good
asked to introduce this
describe the existence
Facilitator", was lead by Greg Pacini, Vice
regimen at the
of precursor myeloma B
President of the Wel ness Community, St.
University Hospital at
cells ­ a report pub-
Louis, and taught us how to be a good traffic
Karolinska Institute. I
lished in 1974. I soon
cop! But when he talked to us about how to cope
was just starting my
realized that there was a
with a loss in a group, our group had a melt-
career ­ I didn't even
unique structure on the
down. It seemed to happen almost spontaneous-
have my certificate yet.
o
surface of the myeloma
ly - 30+ people al having a good and long over-
Hakan Mellstedt, Ph.D., M.D.
I became interested in
cell that could be uti-
due cry. Greg led us through it and out of it, and
Professor of Oncologic Biotherapy
I can honestly say that it felt great.
myeloma. The head
Administrative Director, Cancer Centre Karolinska
lized as a target for ther-
The weekend flew by and ended with a
physician of the depart-
Department of Oncology, Karolinska Hospital
apy. At that time, I was
firm commitment to make the IMF Support
ment was a tumor immunologist and we
not really aware of T cell regulation. As
Group Leaders Retreat an annual event. We
realized that a lot of the immunology
we acquired more knowledge in immunol-
walked away having experienced something very
studies could be done in myeloma.
ogy, we realized that T cells could regulate
special and having formed a strong bond with
the growth of tumor cells. I realized that
each other. And, we drafted what we hope wil
MT: The Karolinska Institute is a highly
there might be a specific regulation of the
become the support group mission statement:
regarded center. Please tell us about it.
tumor clone in myeloma. At the end of
Empower patients through education, reach
Prof. Mellstedt: The Karolinska Institute
the 1970s, I was the first to describe
out to caregivers and provide hope to fami-
is an umbrella organization for all medical
abnormalities in T cells in myeloma. I
lies. I look forward to seeing al the leaders again
education in Stockholm with a medical
didn't know how, but the T cell popula-
at next year's retreat.
faculty of its own. There is a campus with
tion was in some way connected to the
Susie Novis
mainly pre-clinical research and there are
Please see page 8

---

N
The IMF is dedicated to improving the
EW INSIGHTS AND FUTURE DIRECTIONS
quality of life of myeloma patients while
Report from the IMF Patient & Family Seminar in London, England.
working toward prevention and a cure.
by Kenneth C. Anderson, M.D.
they both directly kill myeloma cells and in
IMF Headquarters:
addition act to change the bone marrow in
12650 Riverside Drive, Suite 206
Although multiple myeloma is sen-
ways which further inhibit the ability of the
North Hollywood, CA 91607-3421 USA
sitive to chemotherapy and radiation thera-
myeloma cell to grow and survive.
Tel: (800) 452-2873 or (818) 487-7455
py, long term survival without symptoms or
The second area of great promise is
Fax: (818) 487-7454
signs of myeloma is unusual and few, if any,
derived from an increased understanding of
E-mail: TheIMF@myeloma.org
patients have been cured. Therefore, new
the circuits within the myeloma cell which
Website: www.myeloma.org
therapies based upon a better understanding
allow the tumor cell to grow and survive
of how myeloma cells grow are urgently
without the controls which exist in normal
Susie Novis
needed. Advances in three areas of research
cells. Novel drugs can either be circuit-
President
now provide the framework for related novel
E-mail: snovis@myeloma.org
breakers, which inhibit myeloma cell growth
therapies for myeloma.
circuits, or circuit-makers, which trigger the
Myeloma cells grow and survive in
Amy Nielsen Palumbo
circuits in myeloma cells leading to their
Vice President
the bone marrow where they adhere to the
death. These designer drugs are undergoing
E-mail: anpalumbo@myeloma.org
normal bone marrow cells and proteins.
laboratory testing and should be available for
This binding of tumor cells assures their
clinical evaluation soon.
Suzanne Battaglia
localization in an environment where they
The third area of high promise is
Director of Media & Events
can grow and survive, and furthermore
the development of immune-based treat-
E-mail: sbattaglia@myeloma.org
makes them resistant to chemotherapy.
ments, either vaccinations or adoptive thera-
Drugs which inhibit myeloma cell binding to
pies. Vaccines against myeloma are designed
Romi Brozeit
bone marrow cells can restore the ability of
to stimulate the patient's own immune sys-
Director of Development
chemotherapy to kill myeloma cells. Potent
E-mail: rbrozeit@myeloma.org
tem to recognize and reject the myeloma
aminobisphosphonates, which are currently
cells as foreign invaders. These vaccines
used in myeloma to delay bone disease, also
Stephanie Colman
stimulate the patient's immune system to
Director of Community Relations and
may act by inhibiting the ability of myeloma
recognize pro-
Public Affairs
cells to adhere
...new treatment approaches will kill the
teins which are
E-mail: scolman@myeloma.org
to bone mar-
tumor cell directly and target the bone marrow either unique
row. When
microenvironment; target the abnormal growth to each patient
Marya Kazakova
myeloma cells
with myeloma
Publications Editor
adhere in the
and survival circuits in myeloma cells; and
or proteins
E-mail: mkazakova@myeloma.org
bone marrow,
stimulate immune responses against myeloma. which are
factors which augment tumor cell growth
shared by many patients. Additional vac-
Carole Menacker
and survival are also produced (i.e. inter-
Financial Associate
cines are designed to stimulate a patient's
leukin-6). Proteosome inhibitors are newly
E-mail: cmenacker@myeloma.org
immune defense system to recognize the
available drugs which not only directly kill
entire myeloma cell as foreign and reject it.
Renee Rape
myeloma cells, but also are able to decrease
Besides vaccines, it is now possible to
Director of Meeting Services
tumor cell binding in the bone marrow and
remove immune T cells from patients or
E-mail: rlrape@myeloma.org
interleukin-6 production. Moreover, these
their siblings and educate them in the labo-
new drugs kill even those myeloma cells
ratory to recognize and kill myeloma cells.
IMF (Philadelphia)
which are bound to bone marrow and pro-
These educated T cells can then be trans-
2124 Mt. Vernon Street
tected against chemotherapy. Other factors
fused to patients as another way to generate
Philadelphia, PA 19130 USA
are produced in excess by tumor and bone
an immune response against myeloma cells.
Tel: (215) 236-0400
marrow cells in myeloma which change the
These immune-based approaches offer the
Fax: (215) 236-1400
marrow environment. One such factor is
opportunity to selectively and very efficient-
vascular endothelial growth factor, which
IMF (UK)
ly target myeloma cells without the adverse
both augments tumor cell growth and
9 Gayfield Square
side effects related to the harm done to nor-
Edinburgh EH1 3NT Scotland
increases formation of new blood vessels in
mal cells which accompanies chemotherapy.
Tel: (44) 0131-557-3332
the marrow to supply myeloma cells with
In summary, multiple new treat-
Fax: (44) 0131-556-9720
needed nutrients. Drugs are now available
ment approaches will kill the tumor cell
E-mail: myeloma@myeloma.org.uk
which inhibit this new blood vessel forma-
directly and target the bone marrow
Eric Low, IMF (UK) Executive Director
tion, such as angiogenesis inhibitors and
microenvironment; target the abnormal
UK Staff: Christy Browne, Susan Hamilton
thalidomide, and also target cells. More
growth and survival circuits in myeloma
potent analogues of thalidomide directly kill
cells; and stimulate immune responses
The information presented
tumor cells, alter the interaction of myeloma
against myeloma. These new treatments will
in Myeloma Today is not intended to
and bone marrow cells, overcome resistance
take the place of medical care or
not only be more effective, but also have
of myeloma cells to chemotherapy, and stim-
the advice of a physician. Your doctor
fewer side effects than currently available
ulate the patient's own immune response
should always be consulted
therapies. They offer great potential to
regarding diagnosis and treatment.
against their myeloma cells. These and
improve the quality of life and survival
other agents therefore offer great potential
of patients with myeloma.
2
to improve the outcome of treatment, since

---

NOVEL HORIZONS FOR THE TREATMENT OF MYELOMA
mal cells, especially bone marrow derived
Inhibiting IL-6 production in the bone mar-
cells including white cells, red cells and
row or blocking the signaling pathways asso-
platelets. Fortunately, patients may be res-
ciated with IL-6 binding to myeloma cells
cued from this major side effect by using
may improve survival of myeloma patients
autologous bone marrow or peripheral blood
and researchers are actively pursuing this
stem cells following the administration of
possibility.
high dose therapy.
Another means by which the bone
Another approach that ultimately
marrow environment influences myeloma
may be more effective than high dose thera-
cell survival is by direct cell contact. Our
py is the development of drugs that target
laboratory in Tampa, Florida recently report-
cellular pathways that regulate myeloma cell
ed that when myeloma cells are in direct
growth and survival. Developing drugs that
contact with a particular bone marrow com-
target unique pathways in myeloma cells
ponent called fibronectin, they are resistant
should allow clinicians an approach to elimi-
to commonly used chemotherapy agents.
nate myeloma cells but spare normal cells.
This form of drug resistance is called "cell
For example, investigators at the Moffitt
adhesion mediated drug resistance" (CAM-
Dr.Wiliam S. Dalton, Ph.D., M.D.
Cancer Center in Tampa, Florida recently
DR). Theoretically, disruption of myeloma
Deputy Director, Moffitt Cancer Center
Professor and Chairman of Oncology, University of South Florida
discovered that a cellular pathway called the
cell adhesion to fibronectin (and possibly
by William S. Dalton, Ph.D., M.D.
Jak2/Stat3 pathway prevented myeloma cell
other bone marrow components) should
death by increasing the expression of an
enhance the effectiveness of chemotherapy
Effective therapy for the treatment
"anti-death" gene called
and possibly
Understanding the biology of myeloma
of myeloma began in the early 1960's with
Bcl-Xl. This Bcl-Xl gene
other treat-
cells is the key to developing novel
the discovery of melphalan (Alkeran®) and
prevents chemotherapy,
ments.
therapies to target myeloma cells and
prednisone as effective therapy. During the
radiation therapy, and
Investigators
yet spare the normal cell.
past four decades, various combinations of
maybe even immune ther-
are now search-
chemotherapeutic drugs have been devel-
apy, from killing the myeloma cell. Basic
ing for agents that will disrupt adhesion and
oped and proven to be effective in the treat-
research is now ongoing to develop means to
enhance the effectiveness of chemotherapy.
ment of myeloma. These combinations
interrupt the Jak2/Stat3 pathway in myelo-
Basic research is uncovering unique
include agents such as Adriamycin,
ma cells to improve therapeutic outcome.
properties of myeloma cells that will allow
cyclophosphamide, vincristine and glucocor-
A second example of a unique cel-
the development of novel therapeutic
ticoids, including prednisone and decadron.
lular pathway that may allow myeloma cells
approaches to this disease. Understanding
Although most patients respond to these
to survive and grow is the "Ras" pathway.
the biology of myeloma cells is the key to
chemotherapeutic drugs, essentially all
The Ras gene is a cancer gene that is active
developing novel therapies to target myelo-
patients eventually develop resistance to
in at least 40 to 50% of patients with myelo-
ma cells and yet spare the normal cell. This
chemotherapy. Fortunately, basic research
ma. Laboratory studies have demonstrated
specific targeting of the myeloma cell should
findings have begun to shed light on how
that if the Ras pathway is inhibited by drugs
enhance effectiveness and reduce side effects
myeloma cells become resistant to therapy
called farnesytransferase inhibitors (FTIs),
of myeloma therapy. Clinical studies are
and novel approaches are being developed to
then cancer cells using this pathway may
planned to identify potential drugs that will
prevent or overcome these drug resistant
die. The FTI drugs may also be effective
bring this promise to reality.
mechanisms.
against other critical pathway molecules
Today, at least three major ap-
unique to the cancer cell and interruption of
IMFER RUNS
proaches are being investigated to improve
these critical pathways may prevent myelo-
CLEVELAND MARATHON
therapy of myelo-
ma progression. Clinical
...essentially all patients eventually studies are currently being
Congratulations to IMFer Gregory
ma patients.
develop resistance to chemotherapy. planned to study the effec- Melick for completing the CVS/Pharmacy
These include
tiveness of FTIs in myeloma patients.
Cleveland Marathon & 10K. Gregory ran
enhancing the effectiveness and reducing
Recent laboratory studies have also
the marathon in honor of his mother-in-law.
the side effects of currently available drugs,
demonstrated that the bone marrow envi-
Marlene Fedor, a mother of 4 and grand-
identifying new targets unique to the myelo-
ronment influences myeloma cell survival
mother of 6, was diagnosed with multiple
ma cell that control growth and survival of
and growth. The bone marrow may influ-
myeloma in January, 2000. Gregory made a
these cells, and enhancing the patient's
ence myeloma cells by either making certain
committment to raise awareness of the dis-
immune response against myeloma cells.
hormones (cytokines), or communicating
ease and to assist the IMF in its fundraising
A major approach to overcoming
with myeloma cells by direct cell contact.
efforts to support myeloma research.
clinical drug resistance is the use of very
The major cytokine involved in myeloma
Gregory is a 25-mile-per-week
high doses of chemotherapy with or without
progression is called interleukin-6 (IL-6).
recreational runner, but this was his first full
total body irradiation. This form of high
IL-6 is synthesized by bone marrow stromal
marathon experience. As a result, over
dose therapy is an effective means of improv-
cells and stimulates myeloma growth and
$2,000 was raised to support the IMF's mul-
ing responses and prolonging survival, but
survival. Basic science studies have also
tiple myeloma research grant program. Our
has significant side effects. Increasing the
demonstrated that IL-6 may reduce the
thanks to Gregory for the hard run
dose of drugs is known to eliminate more
myeloma cells, but also damages more nor-
effectiveness of chemotherapeutic drugs.
miles of support.
3

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The IMF
IMF CALENDAR 2000
August 11
San Jose, California
Founder
Myeloma for Beginners
Brian D. Novis
This session for the newly diagnosed will serve as a primer for the meeting on August 12.
President
Susie Novis
August 12
San Jose, California
Vice President
IMF Patient & Family Seminar
Amy Nielsen Palumbo
This full day seminar will be held at the Crowne Plaza Hotel.
Board of Directors
Chairman Dr. Brian G.M. Durie
Dr. Kenneth Anderson
September 22- 24
Phoenix, Arizona
Michael B. Bell
IMF Clinical Conference - WAM
Charles L. Briscoe
This conference on Waldenstroms, Amyloid & Myeloma is a CME accredited meeting.
Brian Burns
Held at the Biltmore, this program for the practicing clinician will focus on the most
Mark DiCicilia
current approaches in diagnosing, treating and managing these diseases.
Richard Funess
Michael S. Katz
October 27
New York City, NY
Dr. Robert A. Kyle
"Ribbon of Hope - Making A World of Difference"
Douglas M. Mancino
Gala 10th Anniversary Benefit
Dr. Gregory R. Mundy
In celebration of providing a decade of support, the IMF will host a gala benefit at the
John L. Salter
Waldorf Astoria Hotel honoring Charles Osgood, host of "CBS Sunday Morning."
E. Michael D. Scott
R. Michael Shaw
Mark your calendars and join us for this very special celebration!
Irv Skolnick
Donald B. Springer
November 18-19
Tokyo, Japan
William Varnell
IMF Patient & Family Seminar.
Donald R. Woodward
Held jointly with the "Japanese Myeloma Study Group," this two day seminar will feature
Scientific Advisory Board
myeloma experts from the U.S. and Japan.
Chairman Robert A. Kyle, USA
Raymond Alexanian, USA
Kenneth Anderson, USA
IMF WELCOMES A NEW ANNUAL EVENT
Giuseppe Avvisati, ITALY
Bart Barlogie, USA
they would lift. The staff, friends and family
Regis Bataille, FRANCE
also secured pledges and lifted weights.
Meral Beksac, TURKEY
Lifters were sponsored on a $/pound basis.
James Berenson, USA
Some gave donations based on what they
Daniel Bergsagel, CANADA
wished they could lift. All those who partic-
Joan Bladé, SPAIN
ipated had a grand time and the Lift-a-Thon
Mario Boccadoro, ITALY
was a geat success!
Y.C. Chen, REPUBLIC OFCHINA
At the St. Louis IMF Patient &
J. Anthony Child, ENGLAND
Family Seminar, Pat and his wife, Judith,
Raymond L. Comenzo, USA
Meletios A. Dimopoulos, GREECE
presented IMF President Susie Novis with a
Brian G.M. Durie, USA
check for $10,000 to fund multiple myeloma
Dorotea Fantl, ARGENTINA
research. Our thanks to the Cassidy Family
Ian Franklin, SCOTLAND
and the Buffalo Grove, Illinois, community
Gösta Gahrton, SWEDEN
for "pumping up" the efforts of the IMF in
Jean-Luc Harousseau, FRANCE
BGHS Athletic Director Joseph Scarpino and Pat Cassidy
our common battle against myeloma. We
get the banner flying.
Vania Hungria, BRAZIL
also thank them for their commitment to
Douglas Joshua, AUSTRALIA
James "Pat" Cassidy learned of his
continue their support of myeloma research
Tadamitsu Kishimoto, JAPAN
multiple myeloma diagnosis on his birthday,
through an annual event!
Heinz Ludwig, AUSTRIA
May 22, 1996. The disease smoldered until
Ian MacLennan, ENGLAND
1999, then became active. To combat his
James S. Malpas, ENGLAND
feelings of helplessness, Pat Cassidy decided
Hakan Mellstedt, SWEDEN
to take action and try and raise funds for a
Angelina Rodriguez Morales, VENEZUELA
cure. His family and friends rallied behind
Gregory R. Mundy, USA
him. So did the staff of the Buffalo Grove
Amara Nouel, VENEZUELA
High School where Pat, a Clinical Social
Martin M. Oken, USA
Worker, has worked for 26 years.
Linda Pilarski, CANADA
Raymond Powles, ENGLAND
The idea of a Lift-a-Thon occured
Jesus San Miguel, SPAIN
to Pat while lifting weights along with a
Alan Solomon, USA
group of BGHS students. With the help of
Pieter Sonneveld, THE NETHERLANDS
students, faculty, family, and community,
Benjamin Van Camp, BELGIUM
more than 400 participants signed on to par-
Brian Van Ness, USA
ticipate in the co-ed event. Students formed
Pat Cassidy with a young Lift-a-Thon supporter,
4
teams and secured pledges for the pounds
his granddaughter Emma Elizabeth.

---

REPORT FROM A MYELOMA GROUP
mediating bone destruction in myeloma.
therapy and stem cell support. We will ran-
Since OPG, which seems to be essential for
domize transplant eligible patients to receive
bone integrity and is deficient in myeloma
high dose Cytoxan or combination chemo-
patients, is available for treatment, the new
therapy called CDEP to see which of these
model proposed by us may open a new
yields better stem cell mobilization. It is also
avenue in the treatment of bone disease.
possible that one of these approaches may
Another exciting collaboration has
have a better impact on the myeloma itself.
been initiated between our Center and Dr.
We are also offering a transplant regimen
Michel Nussenzweig from Rockefeller
that is different from the standard high dose
University. Dr. Nussenzweiger has made
Melphalan as a single agent. We believe
major contributions to the understanding of
that a combination of Melphalan and
normal B-cell and plasma cell development.
BCNU might be additive, and we will use it
In addition, we are continuing our close col-
for newly diagnosed patients for their first
laboration with Drs. Lucio Luzzatto and
transplant.
Joseph Michaeli, M.D.
Director, Multiple Myeloma Service
Raymond Thertulien from Memorial Sloan-
We are also initiating a series of
Associate Professor of Medicine, New York - Cornell Campus
Kettering Cancer Center to identify genes
Phase II studies for patients relapsing after
New York Presbyterian Hospital
which are preferentially expressed (or
high dose chemotherapy or after two courses
by Joseph Michaeli, MD
silenced) in patients with MGUS, Stage I
of standard chemotherapy (second line sal-
myeloma, and advanced myeloma. In order
vage therapy). These include Thalidomide
Aproximately one year ago, the
to approach this enourmous project, we had
and GMCSF, Thalidomide and Arsenic
leadership of New York Presbyterian
to find a way to isolate DNA from normal
Trioxide (ATO), and a monoclonal anti-
Hospital-Weill Cornell Medical Center
plasma cells as a baseline reference. After
body against an antigen expressed by myelo-
decided to develop a center for myeloma and
many attempts, we were able to come up
ma cell lines (MUC-1). The rationale for
lymphoma. The recruitment of two notable
with a selection procedure that now allows
the combination of Thalidomide and
pathologists, Drs. Dan Knowles and Glauco
us to enrich the plasma cell population from
GMCSF stems from the observations made
Frazzera, laid the foundation for the estab-
normal bone marrows up to 96% purity.
by Dr. G. Kaplan of Rockefeller University
lishment of the Center together with Drs
Thus we were able to construct CDNA
suggesting that Thalidomide enhances the
Morton Coleman, Lief Bergsagel and his
libraries from normal plasma cells and from
immune response against myeloma cells, a
group, John Leonard, and Elaine Schattner.
patients with various stages of myeloma.
property shared by GMCSF. In collabora-
At the same time, my group had started to
Furthermore, using sophisticated DNA array
tion with her group, we hope to prove that
work closely with Dr. Bergsagel's group as
techniques we hope to identify genes that
the use of these two agents in combination
well as with Dr. Ethel Cesarman. The fre-
may play an essential role in the transition
will result in an additive or synergistic
quent interactions between these groups led
from normal to abnormal plasma cells and in
enhancement of the immune recognition of
to the decision to join forces in working
keeping malignant plasma cells in check
the myeloma clone. Similarly, if the main
towards our mutual goal: finding the cure
(such as MGUS and Stage I myeloma). In
effect of Thalidomide is mediated through
for myeloma. When the hospital leadership
collaboration with Dr. Shahin Rafii's lab at
antiangiogenic properties, its combination
extended an offer for me to join the
New York Hospital, we are exploring the
with ATO makes sense in view of the recent
Department of Medicine as Chief of
role of endothelial cells and fibroblasts in
findings reported by Drs. Roboz and Rafii of
Myeloma Service and Director of Research,
promoting the growth of myeloma cells in
the center, indicating that ATO is a potent
I accepted with enthusiasm.
vitro and in vivo.
antiangiogenic agent. Since the use of
Currently, Dr. Selina Vhen-Kiang
Drs. Leonard and Coleman have
Thalidomide is increasing rapidly, it is pru-
and her team are working on plasma cell
recently reported that a combination of low-
dent to understand its side effects. We were
proliferation and differentiation. Dr. Leif
dose Thalidomide, Dexamethasone and
one of the first groups to note the occurence
Bergsagel's lab is known for its contributions
Biaxin (BLTD) was effective in all 29
of thromboembolic phenomena such as deep
regarding the molecular pathogenesis of
patients studied ­ with many patients having
vein thrombosis, pulmonary embolism, and
myeloma, particularly the role of transloca-
significant responses despite being relatively
transient ischemic attack (TIA) in several of
tions involving the immunoglobulin heavy
resistant to Dexamethasone or Thalidomide
our patients. We will initiate a detailed
chain rearrangement region. My lab, under
when given alone. To prove this potentially
search for the underlying cause of
Dr. Andrew Bush, is focusing on the molec-
important finding, our study for newly diag-
Thalidomide-induced thrombogenesis, tak-
ular and biochemical events which are suffi-
nosed patients randomizes them to receive
ing advantage of the expertise that New
cient and/or necessary for myeloma cells'
BLTD versus high-dose Dexamethasone.
York Hospital provides regarding coagula-
commitment to cell death. Also, we are
Likewise, patients relapsing after first line
tion disorders and vascular biology.
exploring the role of C-MYC and P-27, as
chemotherapy are randomized to BLTD ver-
The IMF has done a terrific job in
well as the role of Fibroblast Growth Factor
sus one of two standard salvage therapies.
educating patients and focusing the public's
(FGF). We have recently found that a sub-
Those who relapse after Melphalan and
attention on this disease. The IMF also
stantial proportion of myeloma patients
Prednisone are randomized to BLTD versus
assures myeloma patients that they are not
have very high FGF levels. Dr. Roger
VAD, and those relapsing after a Decadron-
alone in their battle with this disease. This
Pearse, recipient of the IMF research grant
containing regimen are randomized to BLTD
sense of camaraderie, I believe, has an
in both 1999 and 2000, has now joined the
versus ABCM (Adriamycin, BCNU,
important impact on the patients' ability
lab. Dr. Pearse delineated the role of two
Cytoxan, and Melphalan). Patients in first
to cope with myeloma.
novel cytokines, TRANCE and OPG, in
5
remission will be offered high dose chemo-

---

IMF HONORS
IMFERS "FACE" CANCER DURING
CHUCK AND SHARON NEWMAN
ST. LOUIS PATIENT & FAMILY SEMINAR
At the St. Louis Patient & Family
by Stephanie Colman
Seminar, IMF president Susie Novis present-
ed longtime IMFers Chuck and Sharon
More than 150 IMFers turned out
Newman with the Francesca Thompson
for the 28th IMF Patient & Family Seminar,
Outstanding Service Award. Over the years,
held in St. Louis, MO on June 9th and 10th.
Chuck and Sharon have been wonderful
The St. Louis seminar offered a
supporters of the IMF, volunteering their
unique trial format of hosting "Myeloma
time at events and activities and successfully
101: Myeloma for Beginners" on Friday
raising nearly $60,000 through a letter writ-
morning. The Friday session, led by Dr.
ing campaign to support multiple myeloma
Brian Durie and Dr. Morie Gertz, was
research . They are always ready to lend a
designed to bring seminar first-timers up-to-
hand in support of the IMF and the entire
speed on myeloma basics, in preparation for
myeloma community. We are honored to
the in-depth Saturday session.
have the Newman Family on our team, and
On Saturday, Dr. Morie Gertz pre-
pleased to have had the opportunity to rec-
sented information on standard treatment
ognize their tireless efforts.
options for myeloma patients; Dr. Greg
Mundy discussed bone disease; Dr. David
IMFer Andy Lebkuecher takes a turn
Vesole presented information on high dose
in front of the camera with wife Cathy.
therapy; Maureen Carling, RN covered pain
management; and Dr. Brian Durie presented
Based on the success of the IMF's
an update on the use of thalidomide in treat-
first "Face-ing Cancer" campaign, there are
ing multiple myeloma.
plans to expand the program to include sup-
As a new component to the Patient
port groups, area schools and any other
& Family Seminar, the IMF launched the
groups or organizations that wish to partici-
"Face-ing Cancer" campaign. A joint pro-
pate. The IMF is working to create a strong
ject with the National Coalition for Cancer
showing of support for "Face-ing Cancer"
Research, "Face-ing Cancer" is an advocacy
throughout the nation. Regardless of where
program designed to link the individual faces
you live, the IMF encourages you to partici-
and experiences of people and families fac-
pate in this effort. It is important that we
ing cancer with the effort to increase federal
all work together as a unified voice for the
funding for cancer research, prevention and
multiple myeloma community. The "Face-
control. Much like a letter writing cam-
ing Cancer" campaign is one simple way to
Franchesca Thompson Outstanding Service Award recipients
paign, "Face-ing Cancer" uses pre-printed
do your part!
Chuck and Sharon Newman
postcards outlining desired funding increases
IMF'S AWARD WINNING EFFORTS
for the NCI, NIH and CDC. On the front
Editor's note: To implement a "Face-ing
of the card, participants attach a photo-
Cancer" postcard campaign in your home
The IMF has been honored with
graph. Cards are then sent to individual
town, please contact Stephanie Colman, IMF
awards for several of its projects by various
state senators, each card presenting the face
Director of Community Relations and Public
outside organizations:
of someone who has personally been
Affairs via e-mail at scolman@myeloma.org or
The IMF's public relations and
touched by cancer.
by calling (800) 452-CURE.
community affairs programs have been rec-
To kick-off the IMF's participation
ognized for their effectiveness by the Public
in "Face-ing Cancer," IMFers posed for pho-
Relations Society of America, International
tos during the Friday evening welcome din-
Association of Business Communicators,
ner (with the help of our on-the-spot pho-
Press Club of Los Angeles and the
tographer, Andy Lebkuecher!) and nearly
Healthcare Public Relations & Marketing
every one of the dinner guests took part.
Association. A special "thanks" to our
The film was sent out for 1-hour processing
members who have teamed-up with the IMF
(delivered by our fabulous volunteer, Andy!)
to share personal stories with the media.
and the photos were attached to postcards.
The IMF website www.myeloma.org
The names and addresses of individual state
has received a Key Resource Award by
senators were made available and with the
Links2Go.com, an online resource that pro-
help of our marvelous volunteer (thanks
vides online businesses and end-users with
again, Andy!), nearly all 90 photographs
search and directory services. Each quarter,
were addressed and ready for mailing during
Links2Go samples millions of pages to deter-
the seminar. In addition, IMFers responded
mine which pages are most frequently
in full force, taking extra postcards with
accessed. Out of 50 websites selected as Key
them to distribute to family and friends. By
Bob and Benetta Tindall with Prof. Brian G.M. Durie at
the St. Louis IMF Patient & Family Seminar
Resources for the Cancer Topic, the IMF
the end of the weekend, nearly 250 post-
weighed-in at an impressive 9th, thanks to
cards had been distributed!
Photos this page courtesy of Bob Tindall
6
dedicated IMF webmaster, Mike Katz!

---

IMF HOSTS THINK TANK 2000
IMF to Provide NCI with Recommendations on Most Promising Areas for Future Myeloma Research
On June 7, 2000, the IMF
DNA/RNA patterns. In addition to the IPI,
sample analysis and risk assessment, includ-
announced the preliminary results of its St.
the group has proposed the development of
ing studies of single nucleotide polymor-
John's Retreat ­ Think Tank 2000, a two-
new criteria for myeloma diagnosis and
phisms (SNPs). To better meet the needs of
day forum attended by many of the world's
response to treatment. The proposed new
the myeloma community, based on the rec-
leading researchers. The purpose of the
criteria will aim to eliminate the current
ommendations of the group, the IMF will
meeting was to assess the current state of
confusion between "early" vs. "smoldering/
work closely with the research team
myeloma research and reach a consensus as
indolent" myeloma. Since reported survival
throughout the coming months to assist in
to the most promising areas for future study.
is typically from the "slant of treatment,"
the development of an IPI and Collaborative
Recommendations will be presented to the
there is an added difficulty in interpreting
Tissue Bank. Working groups, comprised of
National Cancer Institute (NCI).
outcomes. The reliable assessment of mag-
researchers from Think Tank 2000 as well as
Attendees included: Joan Bladé,
nitude and length of response/remission is
other noted myeloma specialists not present
M.D. (Spain); Brian G.M. Durie, M.D.
also a major goal.
at the meeting, are being established to
(US); Howard Urnovitz, Ph.D. (US);
implement the recommendations.
Douglas Joshua, M.D. (Australia); Robert
2. DEVELOPMENT OF A COOPERATIVE
The role of the IMF is not only to
A. Kyle, M.D. (US); Atul Mehta, M.D.
TISSUE BANK FOR MYELOMA RESEARCH
meet the educational and emotional needs
(England); Prof. Luc Montagnier (France);
Due to the proprietary nature of
of the patient population, but to serve as a
Gareth Morgan, M.D. (England); Gregory
individual research centers' tissue banks, it is
valuable resource for the medical community
R. Mundy, M.D. (US); William Murphy,
often difficult for researchers to gain access
as well. We are being proactive, capitalizing
Ph.D. (US);
The collective discussions, ranging from genetics to the bone
on our ability to organize this dynamic col-
Martin M.
marrow,
laboration of world experts to assess the cur-
and oncogenes to viruses and novel therapies, will
Oken, M.D.
blood and
rent state of myeloma research. Based on
allow the IMF to present solid recommendations
(US); Ray
biopsy sam-
the positive outcome of Think Tank 2000,
Powles, M.D.
regarding some of the most promising new areas ples necessary
we hope to see significant progress in myelo-
(England);
for future myeloma research.
for advancing
ma research in the near future.
Jesus San Miguel, M.D. (Spain); Pieter
research projects. The ability to access tis-
The full proceedings of the IMF's
Sonneveld, M.D. (Netherlands); and Brian
sue samples contributes to a greater under-
Think Tank 2000 will be made available in
Van Ness, Ph.D. (US).
standing of the genetic make-up and biology
the near future. Based on positive feedback
In April, multiple myeloma was
of the disease and will lead to the develop-
from attendees, the IMF plans to host the
added to the NCI's Progress Review Group
ment of new, targeted therapies. It was pro-
next Think Tanks retreat in June 2002.
(PRG) on leukemia and lymphoma. The
posed that a collaborative effort be imple-
For more information, please call
Think Tank 2000 convened to review the
mented to ensure reliable access to these
the IMF at (800) 452-CURE or visit our
progress of myeloma research and make rec-
critical tissue samples. The goal is to inter-
website at www.myeloma.org
ommendations to the NCI. The collective
face patient registry information with tissue
discussions of the participants, ranging from
genetics and oncogenes to viruses and novel
therapies, will allow the IMF to present solid
recommendations regarding some of the
most promising new areas for future myelo-
ma research.
The full recommendations will be
presented in the coming weeks, following a
period of follow-up and the submission of
summary papers from each participant. The
initial outcome includes the following
recommendations:
1. NEW CLASSIFICATION FOR MULTIPLE
MYELOMA PATIENTS
The development of a new
International Prognostic Index (IPI) for clas-
sifying multiple myeloma patients with
respect to patient outcome. The new system
will provide a solid basis for clinical correla-
tion with DNA and RNA expression pat-
terns and will lead to a better understanding
of the underlying biology of the basic dis-
ease. The goal is to identify specific groups
of patients who will be candidates for target-
(l-r) Drs. Mehta, Powles, Sonnenveld, Kyle, Van Ness, Morgan, Oken, Durie, Bladé, Urnovitz,
Montagnier, Murphy, Mundy, San Miguel, Joshua, and Segeren.
7
ed therapies that are directed to specific

---

Prof. Mellstedt - continued
MT: The progression from MGUS to active
from animal models, and the resources and
myeloma is different in Scandinavia than
the background are in our hands.
disease. In the 1980s, we acquired more
elsewhere. Can you explain this?
information on T cell function. Were there
Prof. Mellstedt: This has to do with the
MT: The IMF has been awarding research
specific T cells that could spontaneously rec-
health care community in Sweden. Patients
grants since 1994. This year, you were one
ognize the tumor clone in myeloma? There
tend to see their doctors more often and we
of the recipients of a Senior Grant. What
were several reports of this in animal
are more likely to detect MGUS early.
has this award enabled you to do?
(mouse) models. At that time I was the
Therefore, we have a broader knowledge of
Prof. Mellstedt: With the help of the IMF
only one who worked with T cells in myelo-
prevalence of MGUS in our society. It is
award, we have been able to develop a posi-
ma in humans. We demonstrated that there
more a reflection of the diligence of the
tion in the laboratory entirely devoted to
were specific T cells that could recognize the
Swedish health care system in general.
studying T cells. In studying myeloma, it is
tumor cells. An attractive hypothesis was
important to understand how T cells func-
that this might regulate growth, that the
MT: You recently hosted the VII
tion at the general level. We know that
human immune system could spontaneously
International Myeloma Workshop. You
cancer patients, including those with myelo-
recognize myeloma cells and a vaccination
were also an attendee at the first Workshop
ma, have various defects in T cell function
approach could be successful. We were the
held. How has this meeting changed over
and this is one of the reasons why vaccina-
first to recognize idiotype reactive T cells
the years? Do you feel that Tim McElwain's
tion strategy might fail. We are the first
but we didn't yet know in detail what these
original intent is still being carried out?
group ­ maybe the only group at the
cells did with regard to regulation of the
Prof. Mellstedt: At the first Workshop,
moment ­ trying to characterize in detail
tumor clone. Since then, we have devel-
there was a select group of approximately 40
and understand in general T cell immune
oped a lot of technologies for therapy but we
doctors with a very devoted interest in
dysfunction in myeloma. When we have a
have not been fully successful. At present,
myeloma research. Now we have 800 atten-
good overview of this, we might be able to
we might be able to cure some patients with
dees who are interested in learning about
enhance immunity by vaccination. There
myeloma but I'm not quite sure of this yet.
the disease but are not necessarily actively
are two options: we can select patients who
We can induce complete remission but the
involved in myeloma research. Mostly, they
are more likely to respond to treatment
disease comes back. And gene therapy
are hematologists and oncologists interested
because of their well-preserved T cell func-
treatment has no effect. We have to devel-
in acquiring knowledge. Clearly, the format
tion and, I believe, we will soon have drugs
op other treatment modalities.
has changed. At the first meeting, highly
which might reverse T cell dysfunction that
We are very interested in early
knowledgeable individuals gathered around
can be added to the vaccination protocol.
stage myeloma. Such patients will develop
a table to have very constructive open dis-
Then we will have the possibility of induc-
myeloma, even if it takes a long time, and
cussions about myeloma. This cannot be
ing more effective immunity. The IMF
that means you should not give them
done with 800 participants. Both meeting
grant has enabled me to enlarge my research
chemotherapy regimens, which are toxic. If
formats are very important but their goals
group with a highly competent person
we could find non-toxic regimens, then we
cannot be the same.
entirely devoted to this research.
could start treatment very early and prevent
progression. Here, vaccination might have a
MT: What are the goals of the myeloma
MT: What do you see as the major role of
role. Developing vaccination strategies in
group you have established at the Karolinska
the IMF in the myeloma community?
early disease is what we are aiming at. I
Institute?
Prof. Mellstedt: IMF has a definite role in
think that this approach is most favorable
Prof. Mellstedt: We have two myeloma
the myeloma community. Raising awareness
because during the early stage of the disease,
groups at the Karolinska Institute. We have
of the disease is a very important goal, not
the immune system is comparatively well
a Myeloma Group of Central Sweden ­ a
only among physicians and patients, but also
preserved. The immune system is compro-
large group of 9 to 10 hospitals in the
others. The IMF has done very well in this
mised by the progression of the disease and
Stockholm area collaborating on different
area. The IMF also raises funds to increase
by chemotherapy and transplantation. It
treatment protocols. Then there is my
the capacity of myeloma reseach ­ money
becomes extremely depressed.
research group, with 12 to 15 people dedi-
that only goes to study this disease.
Theoretically, it should be more likely to
cated to myeloma research. Our goal is to
study immune biology, especially with regard
Coming up in Myeloma Today:
have effective immunity induced early dur-
ing the disease.
to T cell function in myeloma, and to devel-
· Profile Interview: Prof. Regis Bataille
op a vaccination strategy for myeloma.
Institute of Biology
MT: You were one of the first to investigate
Nantes, France
the role of interferon. Is it still an important
MT: What do you see as the most hopeful
part of myeloma therapy?
area of research for patients coping with
· "Immunotherapy and MUC-1"
Prof. Mellstedt: Interferon has a statistically
myeloma today?
by Dr. Kenneth Anderson
Prof. Mellstedt: Currently, developing
Dana-Farber Cancer Institute
proven effect in myeloma but the gain in
immunotherapies is one of the important
Boston, Massachusetts
survival is maybe 4 to 6 months. I devel-
oped interferon therapy at the end of the
strategies. We know much more about
· "Bone Disease in Multiple Myeloma"
1970s and at that time there was no other
tumor immunology compared with 10 years
by Dr. Gregory R. Mundy
effective treatment. Since then, there has
ago. We have information from various
U. of TX Health Science Center
been great progress in developing different
other tumor systems about how a vaccina-
San Antonio, Texas
therapies and interferon has become less
tion strategy might be developed. In myelo-
· "Zolendronate Update"
important. In medicine, there is constant
ma patients, you have spontaneous T cell
by Dr. James R. Berenson
progress whereby old therapies are replaced
immunity and I think there is a good hope
Cedars Sinai Cancer Center
by new ones.
of developing a clinically effective vaccina-
Los Angeles, California
8
tion strategy. We have excellent results

---

PATIENT EXPERIENCE: Percutaneous Vertebroplasty
by Joseph Lerner, PhD
had done about 30 patients. The procedure
would be destroyed by the procedure. The
could strengthen the compressed vertebrae,
risks are known to be low but such compli-
I had been having a considerable
stabilize the spinal column, promote healing
cations as infection, bleeding, nerve damage,
amount of mid- to lower back pain, the result
of the fractures and reduce pain. Also, a
worsening of pain, cement entering a blood
of myeloma and its consequent compression
biopsy could be taken to assess the amount
vessel causing blockage, have been reported.
fractures, of which I had two at my lumbar 1
of myeloma in the bone. When effective,
Prior to my vertebroplasty, I was
and 2 vertebrae. I had gotten some relief
the procedure enhances ambulation and a
given a sedative about 10:30 AM and, fol-
from radiation therapy to the affected verte-
return to regular activities, and allows for a
lowing the procedure, my recovery was com-
brae. My oncologist mentioned in passing
reduction in the amount of pain medication.
plete at about 10:40 PM, at which time I was
that our hospital was doing vertebroplasty for
The neuroradiologist explained
given a CT scan of the treated spine region
osteoporosis. I also had seen an article in
that the procedure would be performed using
to evaluate treatment. Next, I was trans-
Myeloma Today (Volume 3, Number 8) on
X-ray guidance under strict sterile condi-
ferred to a hospital room and spent the night
the technique for treat-
tions. General
in moderate discomfort. The triple-lumen
...I required less pain medication and
ment of myeloma pain.
anesthesia would be
port which was inserted into my neck for
My doctor decided that
had greater stability in my back...
administered at the
delivery of medications during the procedure
vertebroplasty, a technique for injecting plas-
time a needle would be inserted through the
was removed that evening. I was discharged
tic cement into the compressed vertebrae,
skin of the back, and the tip of the needle
the following morning, and spent several
might be of benefit to me, so I was referred to
would be positioned in the center of the
days at home recovering from the soreness in
a neuroradiologist for evaluation to see if I
compressed vertebral body. The cement
my back. I was restricted from lifting, bend-
might be a candidate for the procedure.
(polymethylmethacrylate which is better
ing, and twisting about the waist. During
The first step was to have MRI stud-
known as Lucite) would be gradually inject-
this time I did not develop any temperature,
ies of my lumbar and sacral vertebrae. Next,
ed into the bone and allowed to harden over
numbness or tingling, and no infection.
I had an appointment with the neuroradiolo-
a period of three hours during which time I
One week following the procedure,
gist to review my MRIs, to have a spinal fluo-
would be under general anesthesia. One
I noticed that I required less pain medica-
roscopy, and to discuss the procedure. While
hour to one-and-one half hours would be
tion and had greater stability in my back,
viewing the MRIs, the neuroradiologist
required for each injection. The cement
as noted by my ability to stand for periods
pointed out the compression fractures and
used for the procedure has been applied for
of time without stooping. The biopsy
the "salt and pepper" appearance of the
over 25 years for various orthopedic applica-
showed no residual myeloma in either
bones, indicative of myeloma infiltrates. He
tions, including marrow placement. Allergic
vertebra.
explained that vertebroplasty was used for
reactions are rare, as are complications due
Editor's note: For more information, contact
about ten years in Europe, five years in the
to the heat generated as the plastic hardens.
Dr. Lerner at (931) 372-6326 or e-mail him at
US, and one year at my hospital, where he
Moreover, any myeloma in the marrow
jlerner@tntech.edu
PATIENT EXPERIENCE: Lumbar Extension Treatment
by Roy F. Meyer
(VAD), and a wide range of other drugs
and medications.
Multiple myeloma hit me with a
3. My third goal was to regain mobility.
shriek in April of 1999 when three vertebrae
What I learned is that physical con-
collapsed and I tumbled to the floor. The
ditioning is an area that is often overlooked
pain was shattering. For several minutes I
by myeloma patients. Oh, sure, I had heard
was unable to move. My wife, Elaine, forced
about the importance of exercise but when
a strong dose of pain-killing medication into
the pain was the worst and the medication
me and got me to a doctor. For the next
made me the wooziest, exercise was the fur-
eight weeks of examinations, tests and treat-
thest thought from my mind.
ment, I was in constant pain and barely able
As I improved, it became increas-
to move, relying on a clumsy walker and a
ingly important to regaining my strength
shaky cane to go from home to clinic to hos-
and mobility. I started doing the physical
pital to home. My treatment, coupled with a
exercise prescribed: stretches and ultrasound
lack of activity, worsened my physical condi-
therapy. However, what I discovered early
Certified physical therapist John Schaefer monitors Roy Meyer's
tion. I suffered a blood clot in my left leg,
on was the potential value of an aggressive
progress on the computer display.
the one that had served as my underpinning
approach to physical conditioning. Upon
Since last fall, the MedX/Exer-Med
while spending endless hours lying on my
the recommendation of Elaine's brother, a
program has become the key third element
left side in hopes of reducing the pain the
noted orthopedic researcher and surgeon, I
of my therapy. After two dozen twice-a-
medication didn't eliminate.
began training on a computer-based, space-
week sessions, the MedX program has
I realized that to cope with myelo-
age lumbar extension machine. The unit
enabled me to reduce my pain and regain
ma, I needed to focus on three specific goals:
and program are called MedX and have been
considerable mobility. In combination with
1. I had to find a way to manage the pain.
used in the rehabilitation community for
once-a-month Aredia treatments, the exer-
2. I was determined to utilize the treatments
more than 10 years. Designed by Arthur
cise program has helped to strengthen and
my doctors recommended to help control
Jones, the fitness guru who invented
straighten my spine. The results have been
the disease. This included blood transfu-
Nautilus equipment, the MedX program is
9
sions, hydration, radiation, chemotherapy
available at about 1,000 locations in the US.
Please see next page

---

MedX - continued
MYELOMA SUPPORT DOWNUNDER
very positive. Even more encouraging, some
by Laurie Howell
more than forty documents dealing with a
medical studies suggest the MedX regimen
wide spectrum of interests, from disease
will actually help restore and re-grow bone.
The 1997 IMF Patient & Family
explanation, through treatment, and to the
One research study conducted at the
Seminar in Sydney gave a face to myeloma
emotional and physical issues that concern
University of Florida using heart transplant
downunder, that is, in Australia and New
most cancer patients. These documents
patients suffering from osteoporosis, revealed
Zealand. The seminar enabled many bonds
comprise MA's Patient Information Pack
that the MedX program restored bone min-
to be formed and experiences shared and
which is available free of charge.
eral density and prevented trabecular bone
patients realised that they were not alone in
Myeloma Australasia is not a sup-
loss. Other long-term trials are underway to
fighting this rare cancer. The publicity sur-
port group in the conventional sense.
determine the effectiveness of isolated lum-
rounding the seminar also assisted in raising
Rather, it is a network organisation which
bar extension testing not only for rehabilita-
public awareness of the disease and its treat-
assists and supports those seeking to estab-
tion but as a method for preventing chronic
ment. A further spin-off was an increasing
lish and/or run myeloma support groups.
lower back pain. At the rehabilitation cen-
number of multiple myeloma support groups.
This assistance can take the form of direct
ter where I go, more than 1,000 patients
Among the first of these new sup-
help in establishing a group, providing
with back injuries and chronic back pain
port groups were the Canberra-region
resources or responding to specific enquiries.
have been helped over the past six years.
Multiple Myeloma Support Group and
Since the 1997 IMF seminar, the
The protocol has demonstrated results.
Myeloma-Victoria. The listing of the
establishment of MA and the additional
The MedX weight-resistant
Canberra group on the IMF web site led to
1999 IMF Patient & Family Seminar in
machine works by stabilizing the pelvis and
so many enquiries, that in January 1999 it
Sydney, the number of myeloma support
isolating the spine so that the body's small,
was decided to establish a new organisation,
groups has grown to four, along with
weak lumbar muscles are not allowed to
Myeloma Australasia (MA), an Australasian
Myeloma Victoria. These groups and their
work. By having the muscles in the legs and
network of support and information for mul-
respective contact person are listed below:
buttocks take on the load, the lumbar mus-
tiple myeloma patients and carers.
· Sydney (Myeloma Australasia):
cles eventually become stronger. During
The principal function of MA is to
Monica Callachor, 02-9515-6577
treatment, a person is strapped into an
educate and inform patients, their families,
· Canberra-region:
upright position with several pads and belts
doctors, nurses, and the wider community,
Laurie Howell, 02-6251-5364
exerting pressure on the thighs and hips to
about myeloma and its treatment. To do
· Tasmania:
prevent them from moving. It is a dynamic
this, MA works through a network of myelo-
Sue Donohue, 03-6334-8544
exercise that uses a pre-set range of motion,
ma and cancer support organisations while
· South Australia:
linked to weight resistance, time, load and
at the same time creating its own infra-struc-
Pam Judge, 08-8152-0301
endurance. I began with a limited range of
ture of local coordinators who provide sup-
· Victoria:
motion of just 36 degrees, 30 pounds of
port or links to MA's Canberra base.
Bob Moran, 03-9817-4331]
weight, a dozen repetitions and limited
Coordinators are now in place in most major
endurance. It was not easy. Over time,
Australian cities and several key regional
Myeloma Australasia would like to
weight and range of motion were steadily
centres, such as Cairns in far north
acknowledge the support of Novartis
increased and endurance levels were adjust-
Queensland. Coordinators are also to be
Pharmaceutical Australia in enabling the
ed. The goal was to strengthen my lower
found in each of New Zealand's major cities.
back muscles without further damaging the
support groups to operate.
The MA brochure has been distrib-
spine. That's what the MedX machine
uted to all Australian and New Zealand hos-
Editor's note: Membership of MA is free and
seems to do and that's how it differs from
pitals treating myeloma patients, as has the
those in Australia and New Zealand should
other exercise programs. My condition has
MA newsletter, Myeloma News. These two
write to Laurie Howell, 35 Barada Crescent,
improved dramatically ­ I now train using
publications provide information and educa-
Aranda ACT 2614 or e-mail him at:
125 pound resistance.
tion. Among this information is a listing of
lauhow@pcug.org.au
The MedX program, coupled with
stretching and cardiovascular exercises, has
clearly helped strengthen my badly weak-
ened back. My orthopedist agrees that my
physical exercise and continuing Aredia
treatments have led to "significant improve-
ment" in my spinal condition. I am a very
different person now than I was the day I
started the MedX program. I slouched heav-
ily, used a walker and could barely sit upright
in a chair. After four months of MedX ther-
apy, I am on the right track of physical con-
ditioning and pain control. In combination
with my medical treatment, I hope to con-
tinue coping with my myeloma in my fight
for survival.
Editor's note: For more information, call Roy
Meyer at (703) 938-5574, e-mail him at
To take this Porsche for a drive, see the insert!
10
sailor1st@aol.com or go to www.medxonline.com

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News & Notes
Clinical Trial Resource on the Web
EMORY JOINS THE FIGHT AGAINST MYELOMA
CenterWatch maintains extensive
information on clinical trials on their site,
currently tracking over 41,000 government
and industry clinical trials, including 227
that pertain to multiple myeloma. To
retrieve those listings, go to www.center-
watch.com, click on listing of clinical trials,
then click on oncology, then select multiple
myeloma from the list. The trials are listed
by state, with links to more detailed infor-
mation on each trial. You can also subscribe
to an e-mail patient notification service to
be apprised of future trials.
Patient Advocacy Resource
The Patient Advocate Foundation
is a nationwide organization whose mission
is to help patients facing a health crisis.
The group helps patients deal with such
(l-r) Dr. Kenneth Smith, Dr. Jonathan Simons, Dr. Bob Rich, Charles and Jan Briscoe, Dr. Tom Heffner,
issues as denial of coverage by insurance
Dr. Michael M.E. Johns, and Dr Tom Lawley, gather for the formation of the Emory Multiple Myeloma Research Fund.
companies and debt problems. Patients can
contact PAF via www.patientadvocate.org or
IMF Board of Directors member
Working in partnership with
by calling (800) 532-5274.
Charles L. Briscoe is turning his business
Emory, the IMF, and a comittee made up of
acumen and energy toward solving the mys-
other myeloma patients, Briscoe has formed
the Emory Multiple Myeloma Research
Medicare Coverage of Transplants Info
tery of multiple myeloma with yet another
approach. Through a gift to Emory School
Fund. The mission of the Fund is to acceler-
Information regarding Medicare
of Medicine, Charles and his wife Jan have
ate financial contributions to support world
coverage of autologous stem cell transplants
initiated the formation of the Emory
class research toward finding a cure for
for multiple myeloma can be found at
Multiple Myeloma Research Fund at the
myeloma at Emory Unversity's Winship
www.hcfa.gov/quality/8b3-c.htm and informa-
Winship Cancer Institute. The Fund will
Cancer Institute. "We are committed to
tion regarding Medicare coverage of trans-
work to expand and raise the level of
working toward seeing that the local myelo-
plants for amyloidosis can be found at
research concerning the treatment, causes
ma patient has access to the most current
www.hcfa.gov/quality/8b3-c.htm.
and cure of myeloma.
cutting-edge treatment care available. Also,
"Through new research initiatives
that we have the most promising research
Newsblaster.com Joins IMF Family
into the biology and treatment of multiple
trials available right here in Atlanta," added
myeloma, we hope to make a major medical
Briscoe.
The IMF would like to thank the
impact in the ultimate cure of this disease,"
An active member of the Atlanta
team at Newsblaster.com, our Online News
said Dr. Tom Heffner, Associate Professor of
Area Multiple Myeloma Support Group,
Distribution Partner, for generously waiving
Hematology-Oncology of the Emory
Charles Briscoe is making it a personal chal-
the quarterly registration fee for its Internet-
Winship Cancer Institute, who will serve as
lenge to raise awareness of myeloma. He
based news distribution. Newsblaster is a
initial administrator of the Fund. "We
looks at it from a pragmatic businessman's
revolutionary online media distribution sys-
anticipate that this funding will keep Emory
perspective: "It's up to the myeloma com-
tem with a current reach of more than
on the road to becoming a world leader in
munity and us patients to work toward find-
30,000 media contacts. Now, the IMF will
myeloma research and treatment that will be
ing a common ground/level playing field
be able to more effectively distribute myelo-
a resource for the Southeast regional myelo-
with other cancer research and treatments.
ma news and information to the media, as
ma patient community."
We must meet this challenge head on, work-
well as track which editors and reporters
Charles Briscoe was diagnosed with
ing together for all our futures. The disease
are reading the materials.
myeloma in 1997 and travelled the country
is far greater than one person's challenge.
seeking the best treatment available. "I
My vision is for Emory to become a regional
Early Bird Gets the Room
found only a few multiple myeloma physi-
Myeloma Center of Excellence. It's up to
cian experts and myeloma treatment centers,
the multiple myeloma patient community to
If you are planning to attend the
none located in the Southeast. I realized
make this happen."
IMF's 10th Anniversary Gala, please secure
that our region did not provide the expert
The IMF is excited to collaborate
your hotel reservations early, as October is a
level of care so desperately needed by multi-
with the Emory School of Medicine. We
busy time of year in New York City. We
ple myeloma patients so I've set out to
commend Charles and Jan Briscoe for their
look forward to seeing you there!
change that," says Briscoe.
11
initiative.

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FATHER'S DAY WALK-A-THON
ORDER FORM
quantity:
IMF Logo T-Shirt
$12.00 £10.00
________
IMF Baseball Cap
$15.00
________
Going for the Cure
by Dr. Francesca M. Thompson
$11.50 £ 7.00
________
Coping with Myeloma
Kevin Quinn with his 2-year-old son Will.
Poetry by Muriel Kulwin
$15.00
________
FSALE:
On Father's Day, the Aliso Viejo
Audio Tapes 1997 Los Angeles Patient Seminar $10.00*while supplies last ________
community of California raised over $14,000
to support myeloma research by walking in
Audio Tapes 1997 Rye Patient Seminar
$10.00*while supplies last ________
honor of Kevin Quinn. Over 85 friends and
Audio Tapes 1998 Toronto Patient Seminar
$35.00
________
colleagues turned out to participate in the
Audio Tapes 1998 Miami Patient Seminar
$35.00
________
Walk-a-Thon, organized by Kevin's wife,
Audio Tapes 1998 Cleveland Patient Seminar
$35.00
________
Dawn. A number of passers by who stopped
Audio Tapes 1999 Atlanta Patient Seminar
$35.00
________
to inquire about multiple myeloma and the
Audio Tapes 1999 Los Angeles Patient Seminar $35.00
________
purpose of the Walk-A-Thon, joined the
Audio Tapes 2000 Tysons Corner Patient Seminar $35.00
________
event and gave donations. The show of sup-
One Year Subscription to Myeloma Today (US) $25.00
________
port was overwhelming. Our thanks to all
One Year Subscription to Myeloma Today (Int'l) $35.00 £20.00
________
the participants for supporting the Quinn
Back Issues of Myeloma Today (each)
$ 6.50 £ 5.50
________
family and myeloma research.
Myeloma Today Anthology I:
GOLFING FOR MYELOMA
Transplantation for Multiple Myeloma
$ 10.00
________
Myeloma Today Anthology II:
Articles of Continuing Interest
$ 10.00
________
Donation to the IMF
$_____ £_____
________
Total: ________
For international orders, please add US$3.85 or UK£2.50 shipping and handling.
The IMF accepts checks, money orders, and VISA/MasterCard.
(top row) Dave Gaetz, Jami Bestgen, Bob Zins
Please make checks payable to IMF or IMF (UK).
(bottom row) Michele Buttweiler, Rick Gaetz
The First Annual JC Golf
VISA/MasterCard: _______________________________________
Invitational was held at the Wapicada Golf
Expiration Date: ________________
Course in Minnesota in memory of Janet
"JC" Johnson. JC's husband David, along
Name as it appears on card: _________________________________
with the event's organizing committee, gath-
Telephone: ____________________
ered the support of 75 golfers and raised
$8,000 for myeloma research. Committee
member Shelley Zins was delighted. "I was
surprised that people didn't turn us down.
Forward completed order form to:
Everyone was so helpful." After the tourna-
ment, committee member Curt Kittelson
and son Adam turned from golfers to chefs
US Office
UK Office
cooking up a delicious meal for the golfers
International Myeloma Foundation
International Myeloma Foundation
while "Canoise," a local band donating their
12650 Riverside Drive, Suite 206
9 Gayfield Square
time to the cause, entertained.
North Hollywood, CA 91607-3421 USA
Edinburgh EH1 3NT Scotland
The event was profiled in a local
Tel: (800) 452-CURE · (818) 487-7455
Tel: (44) 0131-557-3332
paper, which led to an unexpected develop-
Fax: (818) 487-7454
Fax: (44) 0131-556-9720
e-mail: The IMF@myeloma.org
e-mail: The IMF@myeloma.org.uk
ment. A myeloma patient read the article
and is now helping organize the 2001 tour-
nament! Our congratulations to JC's
family and friends on their success.

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