OCTOBER 2000
VOLUME 4 N UMBER 1
A PUBLICATION OF THE INTERNATIONAL MYELOMA FOUNDATION
Highlights:
Myeloma Today Profile: Prof. Régis Bataille Page 1
Dear Reader,
Ask the Experts: Nonsecretory Myeloma Page 2
Renal Failure in Multiple Myeloma Page 3
On October 27, 2000 the IMF will
Could Lowering Your Cholesterol Have an Added Benefit?Page 4
hold a Gala benefit, "A Ribbon of Hope
Group Leaders Need Support, Too! Page 5
Making a World of Difference." For the past
Myeloma and Public Policy Page 6
decade, the IMF has reached out with a helping
hand to people all over the world. In turn, many
One Voice Against Cancer Page 8
of you have reached back with your own helping
A Patient's Experience: The Goldenberg Snarecoil Page 9
hand. This issue of Myeloma Today is dedicated
Myeloma Support North of the BorderPage 11
to all the volunteers who truly make a difference.
I salute all of you. There is not enough space in
this column to name each and every one of you,
Myeloma Today Profile:
so here is just a small sampling:
Aki Horinouchifounded IMF Japan,
P
and his members raised over $30,000 to support
ROF. RÉGIS BATAILLE
myeloma research. Aki translated the IMF
Patient Handbook into Japanese, helped hun-
Myeloma Today: Please tell us a little
working full-time on the molecular and
dreds of patients and organized the first ever
about yourself. Where did you go to med-
cellular biology of myeloma: M. Amiot
Patient & Family Seminar to be held in Japan.
ical school and how did you become
(CNRS1), S. Barille (INSERM2), S.
Valerie Small, age 13, decided she
interested in myeloma?
Minvielle (CNRS) C. Pellat Deceunynck
wanted to raise money to help her grandfather.
Prof. Bataille: I went to the Medical
(CNRS) and H. Avet-Loiseau (Univ.
She and her friend Stephanie Byrne wrote let-
School of Clermont-Ferrand in the center
Hospital). This research is performed in
ters asking for donations. To show their appreci-
ation, they delivered baskets of homemade choco-
of France. Then I moved to the Univer-
close collaboration with J.L. Harousseau
late chip cookies to each donor. They wrote 35
sity of Montpellier for my internship. I
and his colleagues in the Department of
letters, raised $1,000 and baked lots of cookies!
worked for 15 years as a medical doctor at
Clinical Hematology in Nantes. A lot of
Cathy & Andy Lebkuecherare a
the University Hospital
patients with myeloma
dynamic duo! Cathy started and leads the
in the Department of
are directly referred to
Atlanta Support Group. Both she and Andy are
Immunology and
this department. Prof.
frequent volunteers helping out at our seminars.
Rheumatology. In 1991,
Harousseau, myself and
They continually reach out to others in need.
I moved to the Univer-
our colleagues are very
Marilyn Alexander, leader of the
sity of Nantes as a
active in the work of
Philadelphia support group, organized one of the
Professor of Hematology,
the IFM3, our national
first fundraising events. Most recently, she coor-
Head of the central labo-
myeloma study group
dinated the production of IMF cookbook -
"Cooking For A Cure."
ratory of hematology at
and in the development
Foti Chronopoulos, MDand his
the University Hospital.
of its clinical trials.
family organized and hosted the Chicago
This is my current status.
The central laboratory
Millennium Gala Benefit on New Year's Eve.
I became inter-
of Nantes is the labora-
Gary Takata supported the IMF
ested in multiple myelo-
tory of reference for the
Virus Workshop at the VII International
ma at the beginning of
IFM and collects all
Myeloma Workshop in Stockholm, Sweden.
my internship in 1972.
myeloma samples for
Janet Johnson started and leads the
My M.D. and Ph.D.
FISH and molecular
LA Support Group and is the Chairwoman of
theses were devoted to
Régis Bataille, M.D., Ph.D.
studies.
the "Circle of Friends"fundraising committee.
Professor of Hematology
the clinical and biologi-
And last but not least, I want to thank
Head of the Central Laboratory of Hematology
cal features of multiple
University Hospital, Institut de Biologie, Nantes
MT: You've had a spe-
the Unknown Patient - for everything!
What makes all of you so special is that
myeloma respectively. My interest in mul-
cial interest in myeloma bone disease. Is
whether you raise ten dollars or a million, help
tiple myeloma was strengthened during
that still a major area of your research? If
one other person or a thousand, it's that your
my early stays in Tucson at the University
so, what is the most exciting research into
hearts are huge and your reach enormous.
of Arizona, when I worked with Sydney
the causes and treatment of bone disease?
E. Salmon and Brian G.M. Durie. My first
Prof. Bataille: Myeloma bone disease
Susie Novis, President
works were published with them.
remains a major area of our research. This
At the present time, besides the
topic is more particularly studied by one of
This issue of Myeloma Today
central laboratory of hematology, I coor-
our senior scientists, S. Barille (Inserm).
is dedicated in honor of
dinate a myeloma research group
With regard to the causes of myeloma
IMF Japan Founder
involved in basic research. Senior scien-
bone disease, our most interesting data
Aki Horinouchi
tists, experts of myeloma, are presently
Please see page 10
The IMF is dedicated to improving the
ASK THE EXPERTS:
quality of life of myeloma patients while
working toward prevention and a cure.
NONSECRETORY MYELOMA
IMF Headquarters:
The following is the first in a series of articles intended to provide readers with
12650 Riverside Drive, Suite 206
answers to general questions submitted to the IMF Hotline. In this issue,
North Hollywood, CA 91607-3421 USA
Dr. Robert A. Kyle, Chairman of the IMF Scientific Advisory Board and
Tel: (800) 452-2873 or (818) 487-7455
principal investigator of Mayo Clinic's myeloma program, defines nonsecretory myeloma.
Fax: (818) 487-7454
E-mail: TheIMF@myeloma.org
must be excluded before the diagnosis of
Website: www.myeloma.org
nonsecretory myeloma is proven.
Patients with nonsecretory myelo-
Susie Novis
ma are approximately ten years younger than
President
in typical myeloma. Anemia and elevation
E-mail: snovis@myeloma.org
of serum calcium occur less frequently in
Amy Nielsen Palumbo
nonsecretory myeloma. Kidney failure is
Vice President
much less common and is probably due to
E-mail: anpalumbo@myeloma.org
the absence of monoclonal light chains
(Bence Jones protein) in the urine. The
Suzanne Battaglia
tumor cell mass is usually less than that
Director of Media & Events E-mail:
found in multiple myeloma. Almost all
sbattaglia@myeloma.org
patients have lytic bone lesions. The IgG,
IgA and IgM values are usually reduced. The
Romi Brozeit
most common initial manifestation is bone
Director of Development
pain. X-rays of the bone reveal lytic lesions.
E-mail: rbrozeit@myeloma.org
The diagnosis depends upon the demonstra-
Stephanie Colman
tion of an excess of monoclonal (kappa or
Robert A. Kyle, M.D.
Director of Community Relations and
Professor of Medicine and Laboratory Medicine
lambda) plasma cells in the bone marrow.
Public Affairs
Mayo Clinic
Patients with nonsecretory myelo-
E-mail: scolman@myeloma.org
Rochester, Minnesota
ma are treated in the same fashion as multi-
by Robert A Kyle, M.D.
ple myeloma. Patients younger that 70 years
Marya Kazakova
should consider an autologous stem cell
Publications Editor
Nonsecretory multiple myeloma is
transplant. Patients older that 70 years
E-mail: mkazakova@myeloma.org
characterized by the absence of an M (mon-
should be treated with melphalan and pred-
oclonal) protein in both the serum and
nisone or a combination of alkylating agents.
Carole Menacker
Financial Associate
urine. It occurs in approximately 2% of all
Response to therapy and relapse of patients
E-mail: cmenacker@myeloma.org
patients with myelo-
with nonsecreto-
[Nonsecretory myeloma] patients
ma. The M-protein
ry myeloma can-
Renee Rape
is found in the cyto-
younger then 70 years should consider not be deter-
Director of Meeting Services
plasm of the plasma
an autologous stem cell transplant.
mined by changes
E-mail: rlrape@myeloma.org
cells in about 85% of
Patients older that 70 years should be
in the M-protein
patients. In the
levels. The
treated with melphalan and prednisone
IMF (Philadelphia)
remainder, no M-pro-
response to thera-
2124 Mt. Vernon Street
or a combination of alkylating agents.
tein can be found in
py is manifested
Philadelphia, PA 19130 USA
the cytoplasm and these patients have truly
by a reduction in bone pain, improvements
Tel: (215) 236-0400
nonsecretory myeloma. Electron microscopy
of the hemoglobin level, decrease in serum
Fax: (215) 236-1400
of the plasma cells shows the same features
calcium if initially abnormal, reduction of
IMF (UK)
as found in plasma cells of patients with an
extramedullary plasmacytomas if present, no
9 Gayfield Square
M-protein in serum or urine.
increase in lytic bone lesions and a reduction
Edinburgh EH1 3NT Scotland
The lack of an M-protein in the
in the bone marrow plasma cells.
Tel: (44) 0131-557-3332
serum and urine in nonsecretory myeloma
Survival of patients with nonsecre-
Fax: (44) 0131-556-9720
may be due to the inability of the plasma
tory myeloma is similar to that of patients
E-mail: myeloma@myeloma.org.uk
cells to excrete the M-protein, low synthetic
with multiple myeloma. One might antici-
Eric Low, IMF (UK) Executive Director
capacity of M-protein formation, degrada-
pate a longer survival in the nonsecretory
UK Staff: Christy Browne, Susan Hamilton
tion of the M-protein within the plasma cell
group because of the absence of renal insuffi-
or rapid degradation of M-protein after
ciency. However, the absence on an M-pro-
The information presented
secretion from the plasma cell. The diagnosis
tein in the serum or urine may delay diagno-
in Myeloma Today is not intended to
take the place of medical care or
of nonsecretory myeloma depends upon the
sis until later in the course of the disease
the advice of a physician. Your doctor
demonstration of an M-protein (kappa or
making survival shorter. Overall there is no
should always be consulted
lambda) in the cytoplasm of the plasma cells
difference in the survival of patients with
regarding diagnosis and treatment.
when using an immunohistochemical stain.
nonsecretory myeloma compared with
This is necessary because metastatic cancer
secretory myeloma.
2
RENAL FAILURE IN MULTIPLE MYELOMA
A Summary of the St. John Retreat Think Tank 2000 presentation by IMF Scientific Advisor Dr. Joan Bladé.
recovery were: serum creatinine <4mg/dL,
included and analyzed in the three following
serum calcium >11.5mg/dL, urine protein
groups:
excretion <1g/24 hours.
The median sur-
1. Patients with normal renal function at
vival of the 94 patients with renal failure
diagnosis and transplant (n=476),
was 9 months vs. 33 months for those with
2. Patients with abnormal renal function at
normal renal function. Of interest, patients
diagnosis, but normal at the time of
who recovered from renal failure had a sur-
transplant (n=73),
vival similar to that of those with normal
3. Patients with renal failure at the time of
renal function at diagnosis. Using multivari-
diagnosis and at the time of trans-
ate analysis, the factors significantly influ-
plantation (n=14).
encing survival were serum creatinine and
response to chemotherapy.
The transplant related mortality
(TRM) was significantly higher in the group
Long-term Dialysis in Multiple Myeloma
with renal failure at transplantation (29%
During a 12-year period, 30 patients
vs. 3.3% and 4.2%). However, in evaluable
with MM required hemodialysis (HD) at our
patients the response rate after transplant
Joan Bladé, M.D.
institution. The results observed in 20
was similar in the three groups (90% vs.
Consultant, Hematology Department
patients who survived more than 2 months
Hospital Clinic
91% vs. 92%). In addition, the 3-year sur-
Barcelona, Spain
on HD are summarized. 85% of the patients
vival from transplant was similar in the
were in stage III. Renal biopsy was consis-
three groups. Using multivariate analysis on
by Joan Bladé, M.D.
tent with myeloma kidney in all 10 patients
TRM, three variables showed independent
in whom a biopsy was carried out. The
influence: performance status 3 or 4, hema-
Renal failure is present in about
response rate to chemotherapy was 40%.
globin level <9g/dL and serum creatinine
20% of patients with multiple myeloma
HD was discontinued in only 2 patients (one
higher than 5mg/dL. According to these
(MM) at diagnosis. Renal function impair-
received a kidney graft and one had a late
results, patients with poor performance
ment is usually caused by the so-called
partial recovery). The median survival was
status and a serum creatinine higher than
"Myeloma Kidney" and is associated with
20 months and six patients survived for more
5mg/dL should be excluded from trans-
shortened survival. Renal failure is
than 3 years. There were a total of 42 hospi-
plant programs.
reversible in up to 50% of patients, particu-
tal admissions. The mean hospitalization
larly when its degree is moderate and related
was 19 days per year. However, the sub-
Treatment proposal for Patients with
to precipitation factors such as hypercal-
group of patients who survived less than 1
Severe Non-oliguric Renal Failure
cemia. However, in our experience, approx-
year spent 38 days in the hospital whereas
Considering the crucial importance
imately 10% of patients diagnosed with MM
the mean hospitalization days for those who
of the serum creatinine level in the
in a general hospital have renal failure
survived more than 1 year was only 9 days.
reversibility of renal failure, our proposal for
severe enough to require dialysis. Despite its
This was the same as for patients on HD pro-
patients with a serum creatinine higher than
frequency and poor prognostic significance,
gram because of diabetic nephropathy.
4mg/dL and still with no need for dialysis is
there are few reports dealing with MM and
chemotherapy with VAD or cyclophos-
renal failure. In this short report, the fol-
Role of Plasma Exchange
phamide/dexamethasone (in those with car-
lowing issues are summarized:
It has been suggested that a rapid
diac disorders) along with early plasma-
removal of light chains with chemotherapy
exchange with serial measurements of light
Results from a Single Institution Series
and plasma-exchange could prevent or
chains in serum and urine before and after
During a 25-year period, 94 of a
improve renal failure. However, at the
each plasma exchange in order to investi-
series of 423 (22%) patients with MM had
Mayo Clinic, a trial comparing forced diure-
gate the efficacy and optimal timing of this
serum creatinine level equal or higher than
sis and chemotherapy vs. forced diuresis,
procedure.
2mg/dL (44 patients had a serum creatinine
chemotherapy and plasma-exchange was
level from 2 to 3.9mg/dL while the remain-
carried out. There was a trend in favor of
1. Bladé, J, Fernandez-Llama P, Bosch F, et al.
ing 50 patients had a serum creatinine equal
plasma-exchange, but the difference was not
Renal failure in multiple myeloma. Presenting
or higher than 4mg/dL. The response to
statistically significant. In our experience,
features and predictors of outcome in 94 patients
chemotherapy was 39% (24% in patients
patients with renal failure severe enough to
from a single institution. Arch Intern Med 1998;
treated with a single alkylating agent and
158: 1889-1893
require dialysis are very unlikely to respond
prednisone vs. 50% in patients given combi-
2. Torra R, Bladé J, Cases A, et al. Patients with
to plasma exchange. In contrast, patients
nation chemotherapy; p=0.031). Complete
multiple myeloma requiring long-term dialysis:
with severe, non-oliguric, renal failure are
renal function recovery was achieved in 26%
presenting features, response to therapy, and out-
more likely to benefit from this procedure.
come in a series of 20 cases. Br J Haematol 1995;
of patients (48% of patients with serum crea-
91: 854-859.
tinine between 2 and 3.9mg/dL and 8% of
High-dose Therapy/Autotransplantation in
3. San Miguel JF, Lahuerta JJ, Garcia-Sanz R, et
patients with serum creatinine equal or
Patients with MM and Renal Failure
al. Are myeloma patients with renal failure can-
higher than 4mg/dL; p=0.001). Using logis-
The experience of the Spanish
didates for autologous stem cell transplantation?
tic regression analysis, the factors indepen-
Registry for Transplant in MM was analyzed.
The Haematology Journal 2000; 1: 28-36
3
dently associated with renal function
A total of 566 evaluable patients were
The IMF
COULD LOWERING YOUR CHOLESTEROL HAVE AN ADDED BENEFIT?
Potential New Role for "Statins" in the Treatment of Myeloma Bone Disease.
statins. Another study in the Archives of
Founder
With the development of new bis-
Brian D. Novis
phosphonates such as zoledronate and iban-
Internal Medicine indicated that long term
President
dronate, the focus of bone research has been
statin use appears to be safe despite potential
Susie Novis
on the osteoclasts, the bone resorbing or
toxicities. The development of cancer, for
Vice President
destroying cells in myeloma. Block the
example, was less likely in statin users.
Amy Nielsen Palumbo
osteoclast more effectively and you can have
Would prior statin use result in
Board of Directors
fewer bone problems or skeletal related
fewer SREs at diagnosis? There were no data
Chairman Dr. Brian G.M. Durie
events (SREs). But a critical problem
on the use of statins in myeloma patients.
Dr. Kenneth C. Anderson
remains: bone healing. Osteoblasts must be
Prof. Mundy, along with Prof. Dr. Brian
Michael B. Bell
active to heal bones and, for some reason,
G.M. Durie and Dr. Steven R. Cummings
Charles L. Briscoe
decided to evaluate bone disease at diagnosis
Brian Burns
osteoblasts shut down in myeloma patients.
in myeloma patients who had been taking
Mark DiCicilia
How to get osteoblasts active again
Richard Funess
is an issue highlighted in a recent study by
statins to lower their cholesterol levels.
Michael S. Katz
IMF Board member and Scientific Advisor
Since only 6-7% of myeloma patients have
Dr. Robert A. Kyle
Prof. Gregory R. Mundy. In animal studies,
had high cholesterol sufficient to require
Douglas M. Mancino
Prof. Mundy showed that cholesterol lower-
statin therapy, it has taken time to gather
Dr. Gregory R. Mundy
ing statins (drugs such as Lipitor®, Zocor®,
information on statin use. Final results will
John L. Salter
Mevacor®) can stimulate osteoblasts and
be published and the statistics will be made
E. Michael D. Scott
bone healing. Might statins help bone heal-
available at the IMF website as well as in the
R. Michael Shaw
ing in myeloma patients? Two studies, pub-
next issue of Myeloma Today.
Irv Skolnick
lished in rapid succession in Lancet and
Donald B. Springer
JAMA
Editor's Note: To participate in the study, please
William Varnell
, indicated fewer bone problems (par-
fill out the survey at www.myeloma.org/Survey
Donald R. Woodward
ticularly reduction in the number of frac-
(S must be capitalized).
Scientific Advisory Board
tures) in post-menopausal women taking
Chairman Robert A. Kyle, USA
Raymond Alexanian, USA
IMF CALENDAR 2000-2001
Kenneth C. Anderson, USA
Giuseppe Avvisati, ITALY
October 27, 2000
New York City, NY
Bart Barlogie, USA
"Ribbon of Hope - Making A World of Difference"
Régis Bataille, FRANCE
Gala 10th Anniversary Benefit
Meral Beksac, TURKEY
In celebration of providing a decade of support, the IMF will host a gala benefit at the
James Berenson, USA
Waldorf Astoria Hotel honoring Charles Osgood, host of "CBS Sunday Morning."
Daniel Bergsagel, CANADA
Mark your calendars and join us for this very special celebration!
Joan Bladé, SPAIN
Mario Boccadoro, ITALY
November 18-19, 2000 Tokyo, Japan
Y.C. Chen, REPUBLIC OFCHINA
IMF Patient & Family Seminar
J. Anthony Child, ENGLAND
Held jointly with the "Japanese Myeloma Study Group," this two day seminar will feature
Raymond L. Comenzo, USA
myeloma experts from the U.S. and Japan.
Meletios A. Dimopoulos, GREECE
Brian G.M. Durie, USA
December 1-5, 2000
San Francisco, California
Dorotea Fantl, ARGENTINA
American Society of Hematology (ASH)
Ian Franklin, SCOTLAND
In a special presentation, the IMF will award the winners of the 2001 Brian D. Novis
Gösta Gahrton, SWEDEN
Research Grants at this 42nd annual meeting of hematologists. A meeting of IMF
Jean-Luc Harousseau, FRANCE
Scientfic Advisors will also take place.
Vania Hungria, BRAZIL
Douglas Joshua, AUSTRALIA
January, 2001
Atlanta, Georgia
Tadamitsu Kishimoto, JAPAN
IMF Community Workshop
Heinz Ludwig, AUSTRIA
This workshop will be held at the Emory Clinic. Details TBA.
Ian MacLennan, ENGLAND
James S. Malpas, ENGLAND
May 4-8, 2001
Banff, Alberta, Canada
Håkan Mellstedt, SWEDEN
VIIIth International Myeloma Workshop
Angelina Rodriguez Morales, VENEZUELA
This workshop for the medical professional will involve symposia and presentations
Gregory R. Mundy, USA
Amara Nouel, VENEZUELA
emphasizing all areas of myeloma. The scientific program will feature current
Martin M. Oken, USA
developments as well as free exchange of ideas and information.
Linda Pilarski, CANADA
May 12-14, 2001
San Francisco, California
Raymond Powles, ENGLAND
Jesus San Miguel, SPAIN
American Society of Clinical Oncology (ASCO)
Alan Solomon, USA
The IMF will host a booth representing the myeloma community.
Pieter Sonneveld, THE NETHERLANDS
Benjamin Van Camp, BELGIUM
May 17-20, 2001
San Diego, California
Brian Van Ness, USA
Oncology Nursing Society (ONS)
4
The IMF will host a booth representing the myeloma community.
GROUP LEADERS NEED SUPPORT, TOO!
both her
myeloma patient, has developed a personal
book and
mission about her mom's care to promote a
philosophy,
team approach to treatment and care. Deb
which is
shared how she has been able to fulfill her
that "life is
mission. Her idea of having a button that
hard".
you could wear to the doctor's office, with
Barbara
"Don't overwhelm me" on one side and
gladly
"Tell me all" on the other, was a huge hit.
accepted
Probably the most intense session
my offer to
was led by Greg Pacini, LPC, CGP, Vice
speak at the
President and Program Director at the St.
Retreat. I,
Louis Wellness Community. Greg led an
Support Group Leader Retreat participants with IMF staff.
on the
hour session on "How to Facilitate a Group,"
by Amy Nielsen Palumbo
other hand, did have a bit of hesitation...
including tips on being a better active listen-
"How were these upbeat Leaders going to
er and keeping the group focused. He also
One of the goals of the IMF over
react to Barbara's ideas?" The presentation
informed us on the three levels which sup-
the past year and a half has been to develop
was a success and all participants welcomed
port groups progress through:
ways in which we could better assist our
Barbara and her philosophy with open arms.
1. General chit chat, basics;
Support Groups, their members and leaders.
I think I am safe to say we all came away
2. Medical knowledge exchange, support;
Last December, Susie Novis and I were dis-
learning from Barbara that it's okay to feel
3. Emotional exchange.
cussing this point. The result of that brain-
bad at times and that you don't have to
Then Greg moved into the role of a
storming session was the First Annual IMF
always "put on a happy face".
facilitator and used the group to demon-
Support Group Leaders Retreat.
Saturday morning started bright
strate how it's really done. Words cannot
The Retreat provided the Support
and early with a packed agenda. Susie Novis
adequately describe the emotions that were
Group Leaders the opportunity to meet one
and I posed a few simple questions. "What
expressed during the next hour and a half
another, exchange ideas, participate in lead-
does a support group do? What could a sup-
when we learned how to cope with a loss in
ership and group dynamic training. In turn,
port group do? What words best describe a
a group. That experience is etched in our
the IMF learned how we can better support
support group?" Repeatedly, the responses
memories and our hearts.
them and their groups. We hoped for a
were: friendship, empowerment, confidence,
weekend filled with a lively exchange of
hope, and empathy. We then asked the par-
information and ideas.
ticipants to share their group's biggest suc-
On July 14th, support group leaders
cess or proudest moment. Everyone had a
and their guests, speakers and IMF staff
different story but the overall theme was one
arrived at the R. David Thomas Conference
of helping the myeloma community.
Center on Duke University's campus in
Next up was a presentation by
Durham, North Carolina to participate in
Cathy Lebkuecher from the Atlanta support
what turned out to be a most extraordinary
group entitled "Communicating with Group
weekend.
Members". Cathy offered some insights that
The weekend program began on
have proven successful with her own group.
Friday evening with guest speaker Barbara
Sherri and Bubs Tamlyn with Brenda Gregory and Minita Levinson.
She shared ideas on how to stay in contact
Held, Ph.D., Barry N. Wish Professor of
with group members, disseminate a newslet-
Stephanie Colman, Director of
Psychology, Bowdoin College, Brunswick,
ter, and the simple yet effective practice of
Community Relations and Public Affairs,
Maine. She spoke about her philosophy of
having nametags at meetings.
followed Greg's presentation with an inter-
life and her new book, Stop Smiling, Start
The next scheduled topic was the
active session on public relations and aware-
Kvetching... A 5-Step Guide to Creative
IMF Advocacy program. Bubs Tamlyn, a
ness. We learned how to get the important
Complaining. When I met Barbara on a
strong voice for the IMF in the advocacy
story about multiple myeloma into the press.
plane several months earlier, we discussed
arena, presented and moderated this session.
At the conclusion of Stephanie's presenta-
Bubs' snazzy PowerPoint presentation got
tion, we collectively summarized the day,
everyone excited and enthused. He stressed
identified action steps and developed a
that advocacy is everyone's responsibility
"working" mission statement to empower
if not us, who?
patients through education, reach out to
Marilyn Alexander from the
caregivers and give hope to families.
Philadelphia group and Howard Walter from
I have since received many com-
the LA group shared duties as presenters of
ments from the participants about the week-
the Fundraising portion of the agenda. Both
end, including the following from Sol
provided ideas and shared some basic
William Kushner, "This particular retreat
fundraising principles.
was the most enlightening and enthralling
After lunch, the group re-con-
that I ever attended." My thanks to Sol and
vened for Deb Exner's presentation entitled
all the other participants who made this
"Patient not Passive". Deb, the daughter of a
retreat so special.
5
Marion State, founder of the Toronto support group.
MYELOMA AND
research was closer to $3 million. However
one chooses to interpret these numbers for
the myeloma community, they are dismal
and unacceptable. And implicitly, the fig-
ures alone argue for more research just for
the sake of equity.
MT: Realistically, how much of an increase
in myeloma research activities could there
be in the coming year?
GB: According to estimates provided last
year to congressional leaders by Drs. Robert
Kyle and Brian Durie, myeloma research
activities in excess of $50 million could
begin within the year. That figure repre-
sents research that has been approved but
not funded by the NCI and other research
supported by the IMF and other non-govern-
mental sources. The PRG and the IMF
Scientific Advisors' white paper should pro-
vide additional research strategies and goals.
The myeloma community will have to edu-
"One Voice Against Cancer" advocates rally on the Capitol steps.
cate Congress about the need to fund those
The November 2000 elections mark
these and other activities, the myeloma
recommendations.
the second anniversary of the IMF's advocacy
community will have reputable road maps to
program. In the past two sessions of Congress,
measure and chart future activity and, hope-
MT: Can you give us some examples about
the House and Senate Appropriations
fully, set new standards and expectations.
how best to "educate" Congress?
Committees have included directives in the legis-
GB: For the sake of political argument, I
lation funding the National Cancer Institute
MT: What kind of standards and expecta-
believe the myeloma community must focus
(NCI) to strongly urge more funding for myelo-
tions?
on two numbers: 1% (the myeloma inci-
ma research (see box). This is unprecedented.
GB: From a practical point of view,
dence rate in the U.S.) and 2% (the myelo-
When Congress convenes for the
researchers must develop the knowledge to
ma mortality rate). Using those figures as a
107th session in January 2001, the myeloma
make myeloma a chronic, treatable illness
guide, next year's $3.8 billion funding level
community will have to work together to trans-
-- for today's patients. That must become
for the NCI should provide between $38-76
late those directives into substantive research
the minimum standard. Myeloma research
million targeted for myeloma research. In
activities. We asked IMF advocacy consultant,
advocates must demand the resources to
any event, it should be substantially higher
Greg Brozeit, to reflect on the past two years
realize that standard. After that, the expec-
than the current $15 million the NCI claims
and provide a picture of where we have been and
tation should be to find a cure. The PRG
it spends on myeloma research. And
where we need to go.
and the IMF white paper will only provide
remember, according to the IMF's interpre-
myeloma research advocates with more
tation of those figures, the real benefit to the
Myeloma Today: We discussed public policy
authoritative and legitimate arguments for
myeloma community of the $15 million is
two years ago in your initial interview with
greater funding. But first and foremost, NCI
nearer to $3-4 million.
Myeloma Today (Vol. 3, No. 3). How has
has to demonstrate that it has the will to
the landscape for myeloma research activi-
address myeloma research.
MT: What are the reasons for the lack of
ties changed?
investment by the NCI into myeloma
Greg Brozeit: Two years ago, we weren't
MT: Does the NCI have the means to
research?
sure how much money the NCI spent on
implement an aggressive research agenda?
GB: I think there are a variety of reasons for
myeloma research. Today, we not only have
GB: The short answer is yes. It is a matter
the current situation. It is important to
an official figure cited by the NCI, but also a
of setting priorities. When I conducted my
remember that substantial increases in feder-
reasonable understanding of how to interpret
first interview for Myeloma Today, the annu-
al funding for medical research have been
and measure them.
al budget for NCI was $2.9 billion. Based on
realized mostly within the last decade,
Two years ago, the NCI had no
what we know Congress is likely to pass later
thanks largely to congressional leadership
research plan to target and treat myeloma
this year, the fiscal year 2001 will be about
and NCI Director Dr. Richard Klausner.
patients. Today, as many of you know, the
$3.8 billion. However, according to NCI
Congress is in the third year of a five-year
NCI has convened a Progress Review Group
figures, during that same period myeloma
commitment to double the National
to develop a comprehensive research plan
research has increased by less than $4.5 mil-
Institutes of Health (NIH) budget and indi-
for myeloma. In addition, the IMF
lion -- from $10.7 million to $15.2 million.
cations are that support will grow as long as
Scientific Advisors are developing a myelo-
In testimony submitted to Congress in 1999
the science shows demonstrable benefits.
ma research "white paper" to provide a com-
(see Myeloma Today, Vol. 3, No. 6), the IMF
But as good as that news may be, it is
prehensive overview of the field. Because of
estimated that the real benefit to myeloma
not enough.
6
PUBLIC POLICY
From an objective point of
about cancer research issues within Congress
benefits sooner rather than later.
view, it is very understandable why, in the
and among the federal agencies.
Recently we became members of
cancer research world, breast and prostate
This year, we joined One Voice
Cancer Leadership Council, a patient-advo-
cancer research receive the greatest amount
Against Cancer (formerly known as the can-
cacy coalition that takes a strong interest in
of attention and funding. They affect more
cer appropriations working group), a coali-
Medicare and other regulatory issues and
people. This research has led to significant
tion of more than 40 organizations focused
research funding issues. The head of the
declines in the mortality rates among a vari-
on lobbying for increases in funding for the
CLC, Ellen Stovall, organized The March:
ety of cancers. But not all cancers share in
NIH, NCI, and Centers for Disease Control
Coming Together to Cure Cancer. As the
the good news, and that will cause policy
and Prevention (CDC). This effort, led by
only myeloma representatives at The March,
makers to address these discrepancies in the
the American Cancer Society (ACS), sig-
I find it particularly appropriate that we are
future. That will take a much greater com-
nals a marked change in the tactics of can-
members of CLC.
mitment to medical research than the feder-
cer research advocacy. The new head of
MT: What can myeloma patients, family,
al government has been willing to take.
ACS government relations, Dan Smith, is a
friends, doctors, and researchers do to aid
For example, the entire NIH budget
former top level congressional staffer who
the advocacy efforts?
will be less than $19 billion next year.
brings a new perspective to our efforts. He
GB: I want to emphasize that Congress is
Defense funding will be more than $300 bil-
has done a remarkable job of bringing
where the action is on major cancer research
lion. A small shift in priorities would
together disparate voices under a common
funding. Members of Congress and their
encourage young scientists to seek opportu-
umbrella. Together, we are working to sig-
staff members must become more aware
nities in medical research rather than other
nificantly increase overall cancer research
about myeloma and the need for more
fields. Within the
funding. This will
...the myeloma community must focus
research so that they can support and advise
medical research
give congressional
on two numbers: 1% (the myeloma
the leadership of the committees with juris-
world, incentives
efforts to increase
incidence rate in the U.S.) and 2%
diction of funding affecting cancer research.
have to be created
myeloma research, as
That is why members of the myeloma com-
to encourage can-
(the myeloma mortality rate). Using well as all other types
munity must be vocal to their representa-
cer researchers to
those figures as a guide... the NCI
of cancer, a greater
tives. Without education about myeloma,
work in neglected
likelihood of being
should provide between $38-76 million
we can hardly expect them to act indepen-
fields like myeloma.
realized. (See page 8)
targeted for myeloma research.
dently on research funding or any other issue
I spoke to
The IMF has also
of importance to us. As I remind everyone
a prostate cancer researcher last year whose
joined Patients CURe, the Patients'
in the myeloma community all the time, did
real interest was in myeloma but "the fund-
Coalition for Urgent Research, a coalition of
you know about myeloma before the diagno-
ing opportunities just aren't there." The key
more than 120 voluntary health organiza-
sis of yourself, a loved one, or friend?
is to significantly increase the funding pie for
tions, universities, and religious representa-
cancer research without succumbing to
tives that supports implementation of NIH
MT: What are the other issues you see com-
"either-or" arguments within the cancer
guidelines for research on stem cells derived
ing up in the future?
advocacy community.
from human cells. Although there is no
GB: I think one of the major challenges in
We are more than members of the
research being undertaken specifically link-
the future will be to create programs for the
myeloma community; we are members of a
ing advances in this type of stem cell
smaller cancers (such as myeloma, lym-
larger cancer community. That became
research to myeloma research, the IMF
phoma, pancreatic and kidney cancers) at
apparent to us two years ago when we partic-
believes that increased activities will benefit
the CDC. Unlike NIH and NCI, where
ipated in The March: Coming Together to
the myeloma community. Therefore, by
Congress "encourages, urges, and recom-
Cure Cancer in Washington, DC with tens
speeding up and diversifying current
mends" research directions within the agen-
of thousands of cancer advocates from
research, the IMF believes that cancers
cies, CDC legislative directives are very spe-
throughout the nation. But to better serve
including myeloma will derive substantial
Please see page 8
the cancer community, we must educate
about the particular needs of the myeloma
"Multiple myeloma (MM) is an incurable cancer of the plasma cells of
community. By doing the latter, we add
the bone marrow. MM is the second fastest growing hematological
more value to the former. The goal is not
cancer in the U.S. The Committee is pleased that MM was included in
carve out a niche for myeloma at the
expense of other cancer research initiatives.
an NCI progress review group and looks forward to hearing about the
It is more a matter of setting big picture pri-
Institute's plans for the groups findings at the fiscal year 2002
orities to give the research agencies more
appropriations hearing. The Committee continues to urge NCI to
funds to research specific ideas.
support epidemiological and other data gathering activities relevant to
MM and to coordinate efforts with Centers for Disease Control and
MT: Please address the IMF's involvement
with the cancer advocacy community?
Prevention, the National Institute of Environmental Health Sciences,
GB: The IMF has joined in a number of
the Office of Rare Diseases, and the Office of Research on Minority
coalitions to work within the cancer com-
Health. The Committee encourages the Institute to disseminate and
munity. Last year we joined the National
educate the public and health professionals about the symptoms of and
Coalition for Cancer Research, a 28-member
treatment for MM." -- House Report 106-645
organization dedicated to raising awareness
7
Public Policy - continued
ONE VOICE AGAINST CANCER
cific. The agency will engage in no activity
without specific directives from Congress. It
by Brad High
is the applied side, so to speak, of the federal
medical research apparatus.
At the invitation of Greg Brozeit, I
At a recent briefing on CDC can-
boarded a southbound Amtrak train in
cer prevention, I asked a representative from
Philly on Monday morning and headed to
the agency what programs they had planned
Washington D.C. to join more than 250
for the smaller cancers. He responded,
cancer research advocates for the "One
"None." When we educate Congress about
Voice Against Cancer" lobby days. Greg
the need for myeloma research, we also need
had successfully persuaded a jaded and polit-
to consider how to apply the education to
ically disengaged "boomer" that the effort
the public. That will be the role of the
was important. Troops were needed on
CDC. The advocacy community must make
Capitol Hill to help ensure that Congress
this a reality.
would support higher funding for the NIH,
NCI and CDC. One Voice Against Cancer,
MT: Will political pressure speed up the
representing over 36 cancer organizations,
processes to find better treatments and a
united in an effort to achieve a 15% increase
cure for myeloma?
in the NIH budget, appropriate $4.1 billion
GB: We have made significant progress. We
to the NCI, and to boost cancer-related
should be more hopeful than we were two
funding at the CDC to $622 million. And
years ago. But we must see concrete deeds
guess what? They did!
that back up good intentions. The most dif-
After a well-organized afternoon of
ficult aspect of the advocacy program is the
training and workshops, participants attend-
frustration of balancing the realities of time
ed an evening reception in the Senate Hart
with the slow pace of the political process.
Office Building and then re-grouped the
Carolyn "Bo" Aldige, president of the National Coalition for
As pleased as I am with our progress over the
next morning for breakfast and a brief pep
Cancer Research, flanked by Rep. Deborah Pryce (R-OH),
addresses the media at the rally.
past two years, I am aware that myeloma
talk inside the U.S. Capitol. The organizers
out the nation have been closing due to
patients want answers and results now.
of this event did a terrific job explaining
inadequate funding. The Hanford Health
This reminds me of a passage in
what we could expect once we fanned out
Initiative -- a registry near the Hanford,
Alan Lightman's novel, Einstein's Dreams.
over the Hill in small groups to call upon
Washington nuclear facility in the Pacific
"For while the movements of people are
the offices of our respective members of
Northwest where I was born and raised --
unpredictable, the movement of time is pre-
Congress throughout the rest of the day.
had closed down only a few days earlier. I
dictable. While people can be doubted, time
"Stay on message," we were repeatedly
was pleased to observe that each staffer we
cannot be doubted. While people brood,
advised. "You will probably not meet your
met that day made a written note at the
time skips ahead without looking back."
congressperson face-to-face but are more
mention of the registries issue and was
Two years in political cycles is
likely to be speaking with a staffer," and this
thrilled to learn two weeks later that an
short; two years for a myeloma patient is,
was certainly true of our Pennsylvania dele-
additional $15 million has been added to the
well, presumptuous for a non-patient to try
gation's visits. The staffers were young,
appropriations bill for their funding.
to describe. In two years we have lost more
smart, and attentive as we spoke.
I learned that one voice can make
than 23,000 myeloma patients in the U.S.
I shared a particular interest with
an impact. Combining with One Voice
and added more than 31,000 to our roster.
One Voice Against Cancer in calling for the
Against Cancer, I found that many individ-
We are making progress, but now that
allocation of more funds in the CDC's bud-
ual voices can make even more of a differ-
progress must increase at a geometric rate.
get for cancer registries. Registries through-
ence. But mostly I learned that policy mak-
I am wildly optimistic about the
ers can't be expected to make decisions
future for myeloma research at the political
about people like me if they don't know
level. At the same time, as I used to remind
about me. I learned that we all have to tell
my former students, the American federal
our stories to make a difference.
system is designed to be intentionally ineffi-
cient. But when you are diagnosed with a
Editor's Note: IMFer Brad High of the
disease like myeloma, results become more
Philadelphia Multiple Myeloma Networking
important than process. In order to contin-
Group joined IMF advocacy consultant
ue the momentum forward, we have to work
Greg Brozeit to represent the IMF at the
together to make this wonderful, inefficient
"One Voice Against Cancer" lobby days
political system respond more effectively by
in Washington, DC on June 19-20, 2000.
providing the unique knowledge we have
Another lobby day will be held on
about myeloma to policy makers. It is the
September 20, 2000 combining the
only way to make our work benefit as many
resources of the National Coalition for
of today's myeloma patients as possible.
Cancer Research and One Voice Against
Cancer. Please contact Greg Brozeit if
Editor's Note: Greg Brozeit can be reached at
you are interested in participating.
(818) 728-4291, by fax at (818) 783-6985, or
Senator Richard Durbin (D-IL) shares a lighthearted moment
8
via e-mail at greg.brozeit@worldnet.att.net
with rally participants.
A PATIENT'S EXPERIENCE : The Goldenberg Snarecoil
by Raymond J. McRory
October, 1999 for
Editor's Note: The Goldenberg Snarecoil
the transplant.
was developed by Dr. Alec S. Goldenberg,
After reading Stephen Walker's
Since the
a practicing hematologist in New York
article "A Patient's Experience: Never Give
Thalidomide is still
City who holds the position of Clinical
Up!" (Myeloma Today Vol. 3, No. 9) as
working, and
Associate Professor of Medicine at NYU
well as previous similar experiences shared
Barbara is getting
Medical School and is the Director of the
by other patients and caretakers we hope
stronger (we recent-
Hematology Clinic at Bellevue Hospital.
to share something with you.
ly went on a two-
While working on his M.D.
My wife Barbara was diagnosed
week vacation to
degree at Johns Hopkins Medical School,
with advanced stage multiple myeloma
Italy), the consen-
Dr. Goldenberg developed an interest in
(more than 90% cancer cells) in November,
sus is to hold off on
biomedical engineering. A number of
1997. She underwent aggressive chemother-
the transplant for
observations suggested that the standard
apy for about 13 months until December,
the time being.
bone marrow biopsy needle and procedure
1998 with the goal of reducing the tumor
From the statistics
might be improved. The needle designed
cells to a low enough level so that her cells
I've been reading
by Dr. Goldenberg features a patented
could be collected for an autologous blood
about the
internal snarecoil capturing device that
stem cell transplant. She spent 164 days in
Thalidomide tests,
reliably delivers clean, intact biopsy cores
the hospital during this initial 13-month
it seems that
without redirecting or manipulating the
period, not only for the regular chemo ses-
Barbara is in that
needle after it has been inserted.
sions, but also was admitted on a number of
fortunate top 10% in results Thank God!
When a lever located in the han-
occasions on an emergency basis for infec-
This leads me to something else we
dle is rotated, the snarecoil at the needle
tions, high fever, etc.
want to share with you. Barbara has been
tip winds around and captures long, non-
After undergoing the above, we
undergoing a bone marrow biopsy every 2-3
fragmented specimens. Longer specimens
were devastated to learn in December, 1998
months to keep tabs on her progress. I'm
provide more material for accurate patho-
that her condition was refractory and the
sure you can all identify with the unpleas-
logic evaluation. The coil grabs the speci-
chemo was not really working anymore.
antness of this procedure, especially in cases,
men and retains it safely within the needle
The cancer cells remained at too high a
such as Barbara's, where she has suffered
as it is withdrawn. This new technology
level (about 60%) to collect the stem cells,
substantial vertebral compressions, fractures,
allows deeper penetration for better sam-
and she was in a too weakened condition to
etc. Lying face down on the table is painful
pling while it reduces the trauma of bone
undergo the transplant in any event.
enough, never mind the procedure itself
marrow biopsies and simplifies the proce-
It was at this time that her oncolo-
notwithstanding the painkillers. We are
dure. "There is no need to twist the needle
gist, Dr. Alec Goldenberg, recommended
pleased to report that this "problem" has
to sever the sample, and because the
Thalidomide. Barbara was started on an ini-
been substantially alleviated. In fact,
unique snare design reliably captures the
tial dosage of 200mg per day, eventually ris-
Barbara commented after her most recent
specimen, there is a substantialy reduced
ing to 600mg per day the level she contin-
bone marrow biopsy that it was not only the
risk that additional passes will be required.
ues to take to date. Miraculously through
fastest, but also the least painful bone mar-
This means fewer inadequate procedures
the efforts of Dr. Goldenberg and our ever-
row biopsy. The recent bone marrow biopsy
and less pain," states Dr. Goldenberg.
increasing reliance upon Our Lord and His
procedures have been progressively less
Dr. Goldenberg has completed
Blessed Mother, our archangels and other
uncomfortable.
over 100 bone marrow biopsy procedures
saints the cancer cells have been almost
The reason for this? What we have
with the snarecoil needles. The average
entirely eliminated (to about 5-10%) and
fondly come to call "the Goldenberg
length of specimens recovered was 2.1cm
Barbara's stem cells were collected this past
Needle". Dr. Goldenberg has developed a
providing substantial tissue for pathologic
new needle for bone marrow biopsies, which
diagnosis. Pathologis evaluation of the
Barbara has found to be tremendous. It is
specimens demonstrated minimal to no
called the Goldenberg snarecoil bone mar-
artifacts and substantial subcortical bone
row biopsy needle, and it seems to work as
marrow. According to Dr. Goldenberg, the
follows:
majority of the patients who have had the
The needle is inserted into the
procedure with both the traditional needle
bone as it is done with other biopsy needles.
and the new snarecoil have found the pro-
Once the needle is in the bone far enough,
cedure more tolerable with the new device.
the doctor rotates a lever in the handle
Pre-clinical data were presented in an arti-
which grabs the specimen. The needle is
cle published in Biomedical Instrumentation
then simply withdrawn without having to
and Technology in 1999. The first clinical
move it around in the patient as is necessary
results (which include myeloma patients)
with the typical needle, eliminating the pain
have been submitted to ASH for the 2000
associated with this step.
annual meeting in December.
Neither Barbara nor I have any
The Goldenberg Snarecoil is FDA
financial interest in this development. We
approved. For additional information, con-
merely want to share this "good news" with
tact Ranfac Corp. at www.ranfac.com
our fellow patients and caretakers.
Barbara and Raymond McRory
or by calling (800) 272-6322.
9
quality of participating centers and the com-
early steps of myeloma oncogenesis and to
Prof. Bataille - continued
petence of its myeloma experts (M. Attal, T.
early diagnosis of myeloma. International
show the potential involvement of an imbal-
Facon, H. Avet- Loiseau, B. Grosbois, J.J.
collaboration could be helpful in different
ance between OPG ligand (a potent osteo-
Sotto, J.L. Harousseau, and myself). Finally,
domains sharing adequate biological tools,
clast differentiation factor) and OPG (its
IFM can count on some research labs work-
sharing rare events in a single center (such
natural inhibitor in the occurrence of bone
ing on myeloma, such as those in Nantes.
as transition from MGUS to myeloma),
disease). Myeloma cells induce this imbal-
Thus, IFM is now supported by the French
sharing knowledge about clinical trials in
ance through their
Ministry of
the works to avoid redundancy and save
interactions with
The discovery of new genes involved in the Health. Many
money, etc.
bone cells. These
biology of myeloma, including tumor anti- new studies are in
data could have
gens, could allow definition of new targets the works about
MT: For patients coping with myeloma,
some interest to
for chemotherapy and immunotherapy.
tandem trans-
what treatments or new therapies do you see
develop new ther-
plants, bisphosphonates, thalidomide, mini-
as offering the most hope?
apeutic strategies. OPG could be used to
allo transplants, and anti-IL-6 strategies.
Prof. Bataille: As detailed previously, there
inhibit OPG-L. Disruption of myeloma-
are now several new therapies to be evaluat-
bone cell interactions with specific antibod-
MT: What areas of research do you see as
ed. To help save time and money and, more
ies could also be planned. Bisphosphonates,
the most important with the advent of
importantly, to be efficient and effective in
especially new bisphosphonates, are also of
sophisticated molecular technology? Do you
attaining our goals, the efforts of myeloma
major interest for us. We are more particu-
foresee new molecular treatment strategies
experts, NCI, national governments, and
larly interested in the potential anti-myelo-
for myeloma emerging soon?
myeloma foundations should be coordinat-
ma effects of some of them.
Prof. Bataille: I think that the use of DNA
ed. Myeloma foundations could support spe-
chips and the definition of myeloma chips
cific roundtables and workshops to acceler-
MT: IL-6 has also been of interest for you.
are very promising. The discovery of new
ate the process.
Can you update us on this area of research
genes involved in the biology of myeloma,
and why you feel it's important?
including tumor antigens could allow defini-
MT: This is the 10th Anniversary for the
Prof. Bataille: We continue to work a lot on
tion of new targets for chemotherapy and
IMF. You've been a part of thefoundation
the role of IL-6 and its soluble receptor in
immunotherapy. In our
for many years. What
the pathogenesis of myeloma. As it is con-
...the biology and management
group, three senior scien-
accomplishments of the
firmed in mice, in humans the IL-6/SIL-6R
tists (H. Avet-Loiseau, S.
of MGUS and smoldering
IMF are you most proud
complex play a major role in the occurrence,
Minvielle and C. Pellat-
myeloma have to represent a
of? Do you see the IMF
survival and expansion of malignant plasma
Deceunynck) are work-
major area of research.
taking a more active role
cells through transcription factors like stat-3
ing on that. More
in France? The IMF plus
and anti-apoptotic molecules like BCL-2,
recently, our lab has been selected to coordi-
the IFM could be a very formidable coalition
BCL-XL, MCL-1... In our group, this topic
nate a national project on this topic.
- do you agree?
is more particularly studied by M. Amiot
Prof. Bataille: I think that the best accom-
(CNRS). We believe that targeting these
MT: As you know, the National Cancer
plishments of the IMF were its fast organiza-
factors and molecules represent interesting
Institute will be conducting a Progress
tion to collect money, help patients and
therapeutical strategies. In a Phase II study,
Review Group for myeloma. If you were to
researchers, especially in the USA. I think
we have shown that anti-IL-6 treatment sig-
make recommendations for new areas of
that everybody would be pleased if IMF was
nificantly improved the efficiency of steroids
research, what would they be? Are there
more active in France to support IFM clini-
and high dose melphalan. We have recently
any areas that you feel are no longer rele-
cal trials and/or basic research. Recently, I
carried out a randomized study within the
vant? Do you see international collabora-
discussed with IMF the idea of supporting
IFM to confirm these data. Furthermore, we
tion as helpful in making progress?
"myeloma centers" for 3 or 4 years rather
plan to investigate anti-IL-6 receptor and
Prof. Bataille: Obviously, I will recommend
than single projects. I think that this could
BCL-2 antisense.
all the previous emphasized topics, each of
be an interesting point.
them being promising. However, there are
MT: IFM is often in the news and referred
some other very inter-
MT: Any final comments of thoughts you
to at major research
I have been working on myeloma esting topics like myelo- would like to share with our readers?
conferences. What it
for more than 25 years.
ma induced angiogene-
Prof. Bataille: I have been working on
so unique? What are
I have managed many patients.
sis and the develop-
myeloma for more than 25 years. I have
the major initiatives
ment of new anti-
managed many patients. Today, for the first
that have earned IFM
Today, for the first time,
angiogenic drugs. In the
time, I am optimistic for the future.
recognition and what
I am optimistic for the future.
same way, all the new
new studies are in the works?
1
approaches in immunotherapy are very
CNRS (Centre National de la Recherche
Prof. Bataille: It is clear that IFM is now a
exciting. It is always difficult to say that
Scientifique) manages the overall scientific
major myeloma study group. Please note that
some areas of research are not relevant any-
research, including Life Sciences;
IFM is not simply a French group any more,
2
more. I can only say that some areas of
INSERM (Institut National de la Santé et
since teams from Belgium and Switzerland
research have been disappointing until now
de la Recherche Médicale) is the French
joined us. I think that the strength of IFM is
(e.g. MDR, interferon) but this could
equivalent of the NIH;
its capacity to quickly recruit many new
3
change. I think that for the future, the biol-
IFM (Intergroupe Francophone du
myeloma patients. (In France, there are
ogy and management of MGUS and smol-
Myélome) is a Myeloma Study Group that
about 2,000 patients diagnosed with myelo-
dering myeloma have to represent a major
include more than 100 medical centers
ma every year.) IFM can also count on the
area of research. MGUS allows access to the
from France, Belgium and Switzerland.
10
News & Notes
Medicare Will Cover Autologous Stem
"Cooking For A Cure"
Cell Transplants for Multiple Myeloma
Coming Soon in
Effective October 1, 2000
It's time to place your orders for
copies of Cooking For A Cure, the new IMF
Cookbook. IMFer Marilyn Alexander took
Myeloma Today...
Medicare patients with multiple
myeloma will no longer have to come up
the initiative to lead this exciting and fla-
with private funding to pay for an autologous
vorful fundraising project, collecting favorite
· "Role of Statins in the Treatment of
stem cell transplant. Medicare will begin
recipes from IMF members around the
Myeloma Bone Disease"
paying for autologous stem cell transplants
world. Now the first volume is on its way to
by Prof. Brian G.M. Durie
for patients with multiple myeloma effective
kitchens worldwide. The proceeds from the
Cedars-Sinai Comprehensive
October 1, 2000, provided they meet specific
sale of the cookbook will benefit the IMF.
Cancer Center
criteria. The new guidelines will allow
Cooking For A Cure is available for $12 per
patients under age 78 who have Durie-
book plus $2 shipping. To order, call the
· "Immunotherapy and MUC-1"
Salmon stage II or stage III multiple myelo-
IMF at (800) 452-CURE, then get your
by Dr. Kenneth Anderson
ma to undergo an autologous stem cell trans-
apron on and get cooking!
Dana-Farber Cancer Institute
plant, provided they are newly diagnosed or
have responded to prior therapy, and have
IMF 10 th Anniversary Gala Celebration
· "Bone Disease in Multiple Myeloma"
adequate cardiac, renal, pulmonary and
To help us celebrate the IMF's 10th
by Prof. Gregory R. Mundy
hepatic function. The new guidelines will
anniversary, please make your reservations
U. of TX Health Science Center
not affect multiple myeloma patients who
to join us at New York's Waldorf=Astoria
sought coverage of an autologous stem cell
on Friday, October 27th! You can also par-
· "Zolendronate Update"
transplant before October 1, 2000. If you
ticipate in the online IMF Gala Auction at
by Dr. James R. Berenson
wish to view the full text of this decision,
www.myeloma.org/auction. For more infor-
Cedars-Sinai Comprehensive
please access the Medicare website at
mation, contact Suzanne Battaglia at
Cancer Center
www.hcfa.gov/quality/8b3-c.htm
sbattaglia@myeloma.org or (800) 452-CURE.
MYELOMA SUPPORT NORTH OF THE BORDER
by Dave Dent
answers questions from the group.
pamphlets on multiple myeloma and treat-
Toronto has a rich base of medical
ment options are available at each meeting
The Toronto and District Multiple
research and the group has benefited
for newcomers, and that people are aware of
Myeloma Support Group was formed in
tremendously from experts giving of their
the International Myeloma Foundation
August of 1997. Marion and Emile State
time. Past topics have included pain man-
(IMF), its website, and its Internet list-serv-
organized a first meeting of about 20 MM'ers
agement, nutrition, and depression. Dr.
er for myeloma patients.
and caregivers. Under their leadership, the
Stewart briefs the group about once a year
One of the highlights for the group
group has grown over the past three years to
on new developments and treatment options
was the March 1998 IMF Patient & Family
160 members, with about 40 to 60 attending
for myeloma and fields questions from
Seminar in Toronto. Members were uni-
each meeting. The membership covers the
the group. Once or twice a year a panel of
formly thrilled to have the access to so many
Greater Toronto Area, with members from
patients replaces the guest speaker. The pan-
experts in myeloma and the time and
close by communities such as Hamilton and
elists describe their treatment strategies and
patience of those experts in answering
Oshawa.
experiences, from side effects to coping
their questions.
The mission of the group is to pro-
strategies for long waits in doctor's offices
The Toronto and District Multiple
vide a forum for multiple myeloma patients,
and hospitals.
Myeloma Support Group meets every second
caregivers, families and other interested par-
The second part of the meeting is a
month from 2:00pm-4:30pm at Bathurst-
ties to provide each other mutual support, to
brief break with refreshments and informal
Clark Library, 900 Clark Avenue West,
share experiences and to provide education
networking. In the third part of the meeting,
Thornhill, Ontario, Canada. The remaining
and information on treatment options, new
breakout groups are formed for people to be
meetings for 2000 will be held on October
developments, local and international con-
able to discuss their issues in different areas.
14 and December 9. Meetings scheduled for
tacts, and related support.
At present, four breakout groups are used: a
2001 will take place on February 10, April
Dr. Keith Stewart of Princess
transplant group (patients planning or who
21, June 23 and August 25. For further
Margaret Hospital acts as advisor to the
have had transplants), a non-transplant
information, please contact Marion or Emile
group and the McCarty Cancer Foundation
group (patients using a non-transplant strat-
State at (905) 669-565 or estate@netcom.ca,
provides financial support for its meeting
egy), a thalidomide group (patients using
Betty Parish at (416) 516-1716, or Mike
room and mailings.
thalidomide), and a caregivers group.
Kacsor at (416) 461-9747.
The format of the meetings is a
A newsletter is prepared after each
three-part affair. After new members
meeting so all members have the benefit
Dave Dent is a caregiver and long time
introduce themselves, a guest speaker
of key points and new items that come up at
member of the Toronto and District
addresses different aspects of treatment, then
each meeting. Marion State ensures that
Multiple Myeloma Support Group.
11
RIBBON OF HOPE
ORDER FORM
The IMF is
pleased to introduce the
quantity:
2nd Edition of the Ribbon
of Hope to the multiple
myeloma community.
IMF Logo T-Shirt
$12.00 £10.00
________
The myeloma ribbon was
IMF Baseball Cap
$15.00
________
created to help raise
Going for the Cure
awareness of the disease
by Dr. Francesca M. Thompson
$11.50 £ 7.00
________
and as a means to show
Coping with Myeloma
support for patients and
Poetry by Muriel Kulwin
$15.00
________
family members coping
FSALE:
with myeloma.
Audio Tapes 1997 Los Angeles Patient Seminar $10.00*while supplies last ________
The Ribbon of Hope made its debut
Audio Tapes 1997 Rye Patient Seminar
$10.00*while supplies last ________
a year ago at the VIIth International
Myeloma Workshop in Stokholm, Sweden.
Audio Tapes 1998 Toronto Patient Seminar
$35.00
________
Since then, the Ribbon of Hope campaign
Audio Tapes 1998 Miami Patient Seminar
$35.00
________
has raised over $20,000 to support research
Audio Tapes 1998 Cleveland Patient Seminar
$35.00
________
and education for myeloma patients.
Audio Tapes 1999 Atlanta Patient Seminar
$35.00
________
The Ribbon of Hope's popularity is
Audio Tapes 1999 Los Angeles Patient Seminar $35.00
________
steadily growing. Members have found their
Audio Tapes 2000 Tysons Corner Patient Seminar $35.00
________
own creative ways to help promote the cam-
One Year Subscription to Myeloma Today (US)
$25.00
________
paign in support of the IMF. For example,
One Year Subscription to Myeloma Today (Int'l) $35.00 £20.00
________
IMFer Perry Stancato Sr. displays informa-
Back Issues of Myeloma Today (each)
$ 6.50 £ 5.50
________
tion about the campaign in his restaurant.
Myeloma Today Anthology I:
In addition, his entire staff wears ribbons
Transplantation for Multiple Myeloma
$ 10.00
________
and informs inquiring customers about
Myeloma Today Anthology II:
myeloma. In turn, some of the customers
have become supporters of the IMF. Other
Articles of Continuing Interest
$ 10.00
________
IMFers are incorporating the ribbons in their
Donation to the IMF
$_____ £_____
________
fundraising efforts.
The Ribbon of Hope lets people
Total: ________
know you care and calls attention to the
need for action to find a cure. To obtain
your Ribbon of Hope, simply provide a tax-
For international orders, please add US$3.85 or UK£2.50 shipping and handling.
deductible donation to the IMF in support of
the Ribbon of Hope campaign or contact
Romi Brozeit at the IMF at (800) 452-2873
The IMF accepts checks, money orders, and VISA/MasterCard.
or rbrozeit@myeloma.org for further informa-
tion or assistance.
Please make checks payable to IMF or IMF (UK).
VISA/MasterCard: _______________________________________
IMF ER SHARES HIS TALENTS
Expiration Date: ________________
Musician André
Name as it appears on card: _________________________________
Boyce has estab-
lished the 2B4
Telephone: ____________________
Kids Foundation
to promote the
sale of his CD's
Forward completed order form to:
and collages. Part
of the proceeds
will go to support
pediatric cancer causes. André, who was
US Office
UK Office
diagnosed with myeloma nine years ago, has
International Myeloma Foundation
International Myeloma Foundation
also designated the IMF as a beneficiary to
12650 Riverside Drive, Suite 206
9 Gayfield Square
North Hollywood, CA 91607-3421 USA
Edinburgh EH1 3NT Scotland
support myeloma research. His contemporary
Tel: (800) 452-CURE · (818) 487-7455
Tel: (44) 0131-557-3332
jazz CD The Climb and his solo piano CD
Fax: (818) 487-7454
Fax: (44) 0131-556-9720
Morning Glow will be released in November
e-mail: The IMF@myeloma.org
e-mail: The IMF@myeloma.org.uk
via www.2B4Kids.org. We wish to thank
André for helping to support myeloma
research through his creative talents.