FALL 1999
VOLUME 3 N UMBER 6
A PUBLICATION OF THE INTERNATIONAL MYELOMA FOUNDATION
Highlights:
Myeloma Today Profile: J. Anthony Child, MD Page 1
Dear Reader,
Tour de France Victory Page 2
How does the IMF pursue its mission
Your Gifts at Work Page 3
of improving the quality of life of myeloma
Melphalan and Prednisone: Still the Right Therapy for Many Patients with Myeloma Page 4
patients while working toward prevention and
Anemia: What to Do If You're Tired of Being TiredPage 5
a cure? We do it by focusing on three main
IMF (UK) Update Page 6
areas: research, support and education. We've
Myeloma Patient Advocacy Page 7
talked a lot about research and support in past
Fundraiser Tops $150,000 to Support Myeloma Research Page 8
issues of Myeloma Today, but not enough about
Choosing Life: A Personal Struggle with Myeloma Page 11
education.
Education is very near and dear to me.
It was the lack of available information about
Myeloma Today Profile:
myeloma that led Brian Novis to found the IMF.
Yes, there is an urgent need for research, but
there is also an urgent need for solid up-to-date
J. Anthony Child, MD
information. That is why the IMF Hotline rings
Myeloma Today: What made you want to
caemia. In collaboration with Prof.
over 1,200 times each month. That is why we
Nordin in the Medical Research Council
send out approximately 1,500 informational
specialise in haematology and when did
packages monthly.
you develop an interest in myeloma?
(MRC) Mineral Metabolism Unit in
The IMF Patient & Family Seminars
Dr. Child: My interest in haematology
Leeds, we carried out studies of the blood
are packed with people hungry for and often in
was kindled as a medical student at Guy's
calcium lowering drug mithromycin (this
desperate need of information. These seminars
Hospital in London about 40 years ago. I
was before bisphosphonates became avail-
provide a wonderful educational forum and a
was particularly impressed by the close
able) and the effects of vigorous rehydra-
chance to meet others, share experiences, build
links between the labo-
tion schedules.
relationships. Here's what some had to say
ratory and clinical prac-
Another happy chance
about our most recent seminar in Los Angeles:
tice. In those days, stu-
was the fact that Teddy
·"It was truly one of the most informative and
dents did blood counts
Cooper was already
well organized events I have ever attended. You
and made slides to look
well established as
gave people the truth, you gave people hope and
Professor of Cancer
you gave people perspectives."
at blood under a micro-
·"The LA Seminar was great. You ladies just
scope and I remember
Research in the
keep getting better!"
confidently diagnosing
University of Leeds.
·"Wow! What an incredible event your myelo-
Addisonian pernicious
He had a research pro-
ma seminar was. We found the whole experience
anaemia (vitamin B12
gram on tumour mark-
to be first-rate. Saturday was superb. We met
deficiency) in one
ers and the biochemical
nice people, learned so much from every doctor.
patient and multiple
indicators of disease
We should give them a standing ovation."
myeloma in another!
activity. One potential
Education empowers you. It puts you
After being awarded
marker of interest to us
back in the driver's seat. It gives you control. It
the haematology prize
was beta 2 microglobu-
wil enable you to be around to take advantage of
and a travelling scholar-
lin (ß2m). This mole-
the new therapies and treatments that research
cule forms part of the
brings. It will help you be here for the cure.
ship to Hong Kong, my
People fund our research program and
career pathway in
J. Anthony Child, MD
HLA antigens. It is not
we appreciate it. But we also need funding for
haematology was determined. I main-
a specific marker for myeloma but we
education. What if there were no one on the
tained a strong interest in myeloma
found that serum ß2m was a stronger indi-
other end of the Hotline for a patient in need?
which was further stimulated by working
cator of prognosis in myeloma than any of
What if that package of information you so des-
with Prof. Jim Malpas at St.
the previously adopted criteria. Our ini-
perately await never arrives?
Bartholomew's Hospital and going down
tial studies in relatively small number of
So please help the IMF not only by
to the Royal Marsden Hospital outside
patients (mirrored by very similar investi-
supporting research, but also by supporting edu-
London to join Prof. Tim McElwain's
gations in France) required confirmation
cation. It's that important!
brain storming sessions on myeloma,
in larger numbers of patients, as could be
Susie Novis,
known to colleagues as a "circus" because
obtained by linkage to the national UK
President
of Tim's free flowing search for solutions
trials under the auspices of MRC Trials.
for a cure for myeloma. Just before I
The collaboration which stemmed from
This issue of Myeloma Today
moved to the General Infirmary at Leeds
this and which involved other myeloma
is sponsored by
in 1974, I had become interested in the
researchers, notably Ian MacLennan, con-
bone changes that occur in myeloma and
tinues up to the present time.
ORTHO BIOTECH INC.
in particular the problem of hypercal-
Please see page 10
The IMF
TOUR DE FRANCE VICTORY:
Founder
CAN IT BECOME A TOUR DE FORCE?
Brian D. Novis
by Brian G. M. Durie, MD
longer remissions and then into a cure?
President
What made the difference for testicular can-
Susie Novis
When Lance Armstrong crossed
cer was the persistence and dedication of Dr.
the finish line of the Tour de France wearing
Vice President
Einhorn, the upcoming president of ASCO.
the yellow jersey, it was not only a winning
Amy Nielsen Palumbo
Each new treatment must be carefully evalu-
moment for an amazing individual, but also
ated and considered as part of a cocktail
Board of Directors
the triumph of a cancer survivor. He illus-
with prior therapies to see if the addition of
Chairman Dr. Brian G.M. Durie
trated what can be accomplished when there
the new drug can make the crucial differ-
Dr. Kenneth Anderson
is an aggressive chemotherapy which works
Michael B. Bell
ence.
well and induces an excellent remission.
Brian Burns
Myeloma patients, like most suffer-
His testicular cancer was most likely cured.
Mark DiCicilia
ing from cancer, are awaiting development
Richard Funess
How close are we to this type of
of the magic drug cocktail that cures the dis-
Michael S. Katz
cure for myeloma? How did tes-
ease. This pres-
Dr. Robert A. Kyle
ticular cancer incurable 25
How did testicular cancer
sures both
Douglas M. Mancino
years ago become a disease
incurable 25 years ago
patients and
Dr. Gregory R. Mundy
which now has treatment that
become a disease which now has physicians to try
John L. Salter
can be curative? How did treat- treatment that can be curative? potentially toxic
E. Michael D. Scott
ment make this leap forward?
treatments in the
R. Michael Shaw
The answers are in many ways hopeful for
hope of stumbling upon the magic bullet. Is
Irv Skolnick
all the patients looking to the development
Donald B. Springer
the cure around the next corner or the cor-
of better treatments for their disease.
William Varnell
ner after that? If you are feeling well, is it
I was in the audience at ASCO in
Donald R. Woodward
worth risking an experimental approach?
1976 when Dr. Larry Einhorn of Indiana
Does that approach compromise your
Scientific Advisory Board
University presented his initial findings
options for future treatments? There is con-
Chairman Robert A. Kyle, USA
using a combination of drugs incorporating
Raymond Alexanian, USA
siderable confusion in the medical and lay
one newer drug, a type of platinum. This
Kenneth Anderson, USA
communities as to what is best. Ironically,
new cocktail was producing dramatic shrink-
Giuseppe Avvisati, ITALY
one problem is the many new treatments
Bart Barlogie, USA
age of metastasis to lung and brain and other
currently available. Which one to try?
Regis Bataille, FRANCE
sites. Patients with advanced disease were
And, who can give the best advice?
Meral Beksac, TURKEY
suddenly going into remission. Dr. Einhorn
The prospect of toxic treatments
James Berenson, USA
showed slide after slide illustrating the dra-
can be frightening. But the fear of missing an
Daniel Bergsagel, CANADA
matic shrinkage in lung nodules. There was
opportunity for a cure can be devastating.
Joan Bladé, SPAIN
amazement in the packed room as the results
Although I do believe a cure for myeloma
Mario Boccadoro, ITALY
were presented.
and many other types of can-
Y.C. Chen, REPUBLIC OFCHINA
There was also
...it will take great courage on the cer is closer than ever before,
J. Anthony Child, ENGLAND
skepticism as to
part of both patients and physi-
Raymond Comenzo, USA
it will take great courage on
whether these
Meletios A. Dimopoulos, GREECE
cians to chart the best course...
the part of both patients and
results would
Brian G.M. Durie, USA
physicians to chart the best
Dorotea Fantl, ARGENTINA
hold up, if the disease would stay in remis-
course and achieve the best quality of life
Ian Franklin, SCOTLAND
sion and produce a lasting cure. As the
while waiting for a miracle.
Gösta Gahrton, SWEDEN
years passed, it became clear that this partic-
Will the new breakthrough for
Jean-Luc Harousseau, FRANCE
ular combination of drugs can produce dra-
myeloma come from some deep molecular
Vania Hungria, BRAZIL
matic benefit for testicular cancer. The ini-
understanding of the disease? Will it come
Douglas Joshua, AUSTRALIA
tial observation turned out to be a major
from luck or an inspired decision in bringing
Tadamitsu Kishimoto, JAPAN
breakthrough.
together some new combination? The histo-
Heinz Ludwig, AUSTRIA
A similar paradigm shift occurred
ry of medicine suggests that, although some
Ian MacLennan, ENGLAND
when it was realized that leukemia in chil-
James S. Malpas, ENGLAND
background knowledge is helpful, the
dren could not be cured until cells remain-
Hakan Mellstedt, SWEDEN
inspired guess is the likely scenario. The
ing in the nervous system were treated with
Angelina Rodriguez Morales, VENEZUELA
example of testicular cancer will undoubted-
Gregory R. Mundy, USA
radiation or chemotherapy, thereby elimi-
ly be followed by advances in other types of
Amara Nouel, VENEZUELA
nating these protected cells and producing a
cancer. As we move towards this Tour de
Martin Oken, USA
full cure. That conceptual change in proto-
Force for all cancers, I hope that myeloma
Linda Pilarski, CANADA
col at the St. Jude's Hospital in Memphis
patients will
Raymond Powles, ENGLAND
converted a treatable disease to a curable
be wearing
Sydney Salmon, USA
disease.
yellow jerseys
Jesus San Miguel, SPAIN
Is it possible that some drugs
Alan Solomon, USA
very soon. ß
already available can be added to our prior
Pieter Sonneveld, THE NETHERLANDS
cocktails to convert good remissions into
Benjamin Van Camp, BELGIUM
2
YOUR GIFTS AT WORK
1999 BRIAN D. NOVIS RESEARCH GRANT REPORT
Overview by Prof. Brian G. M. Durie
Why do myeloma patients develop severe bone damage and how can it be stopped or prevented? These are critical issues for many patients in
need of better treatment options. Even though bisphosphonates are very helpful, bone problems are still threatening for those with progressive and/or
chemotherapy-resistant disease. The research project by Dr. Oyajobi looks at novel ways to block the activation of the osteoclast, the cell responsible for
myeloma bone damage. Blocking a newly recognized substance called RANK ligand and the binding or adhesion between myeloma cells and osteoclasts
will be evaluated. If the blocking proves to be efficient and specific for myeloma induced bone disease without interfering with normal bone metabolism,
new treatments may emerge from these studies. We wish our grant recipient the best of success.
The Role of Cell-Cell Interactions in the Development of Osteolytic Bone Lesions in Myeloma
by Babatunde O. Oyajobi, MBBCh, PhD
myeloma cells stimulate Ocl formation in
More recent studies have suggested that
Univ. of Texas Health Science Center
vivo, it remains unclear whether the tumor
Receptor Activator of NF-KB (RANK), the
cells themselves produce factor(s) that can
receptor which activates NF-KB, is present
Myeloma is unique amongst the
directly stimulate Ocl formation since nei-
on osteoclast precursors. Furthermore,
hematologic malignancies in its propensity
ther human nor murine myeloma cells
RANK ligand (RANKL), a novel member of
to cause extensive bone destruction. This
which cause extensive bone resorption in
TNF ligand superfamily, has been shown to
progressive bone destruction manifests as
vivo, produce significant
be indispensi-
intractable bone pain, spontaneous fractures,
We anticipate that the proposed studies will
amounts of bone-resorb-
ble for Ocl
nerve compression syndromes, life-threaten-
ing activity in vitro.
indicate whether therapeutic agents designed
formation and
ing hypercalcemia and a markedly reduced
Thus, the nature of the
to disrupt VCAM-1/ 4ß1 binding or to block activation
quality of life. Although the bone destruc-
relationship between
RANK activation will provide effective thera- both in vitro
tion is due to increased osteoclast (Ocl)
myeloma cells and Ocl
and in vivo.
activity, the precise nature and source of the
py against bone destruction in myeloma.
remains unresolved.
Collectively,
bone-resorbing cytokines that are invovled
In the last year, there have been
the study strongly indicate that RANKL is
have not been identified. In most patients,
important observations that have clarified
unique as it may be the final common medi-
the myeloma cells exist as "nests" in close
the mechanisms by which osteoclasts are
ator for the osteoclastogenic effect of other
apposition to osteolytic lesions suggesting
formed and activated. The transcription fac-
cytokines and hormones such as tumor
that autocrine, paracrine and/or juxtacrine
tor, nuclear factor kappa B (NF-KB), has
necrosis factor ß (TNFß), TNF, interleukin
mechanisms are involved. There appears to
been observed by our group (Franzoso et al.,
(IL)-1, IL-6, leukemia inhibitory factor
be a complicated but unique relationship
1997) to be essential for Ocl formation.
between myeloma and Ocl. Although
Please see page 12
DONORS FROM JAPAN JOIN THE HONOR ROLL
IMF (Japan) started modestly. At its inception it numbered two members: Aki and Midori Horinouchi. Through their initiative, support
resources for myeloma patients and family members in Japan have grown to include a Japanese Website linked to the IMF and a Japanese translation
of the IMF Patient Handbook. In 1998, Mr. & Mrs. Horinouchi were honored with a Francesca Thompson Outstanding Service Award for their
continuing efforts. The Japan support group has grown in strength and numbers. It now has 200 members and recently held its first general meeting.
The IMF thanks our supporters and contributors from Japan for their participation and generosity.
Mr. Katsumi Abe
Mr. Tomoo Inose
Mrs. Uiko Kuroda
Mr. Hideo Ohnishi
Ms. Fusako Takahashi
Mrs. Keiko Akikusa
Mr. Hirotaka Inoue
Mr. Takeshi Kuwabara
Mr. Kazumi Ohno
Mrs. Hiromi Takeda
Mr. Eiji Ando
Ms. Remi Ishida
Mr. Kousaku Matsui
Mr. Masao Ohta
Mr. Masami Takeuchi
Mr. Shinnichi Araki
Mr. Takashi Ishikawa
Mrs. Fumie Midorikawa
Mrs. Satomi Ohtsuka
Mr. Yoshio Tamura
Mrs. Sumiko Araki
Mr. Chiaki Ito
Mrs. Yuko Mikai
Mrs. Ikumi Okubo
Miss Sanae Taniuchi
Mr. Yutaka Endo
Mrs. Kiyoko Iwamoto
Mr. Shigeru Miki
Mr. Ichiro Ono
Mr. Kaoru Tokuda
Mr. Kazuko Fujita
Mr. Masakazu Iwasaki
Mrs. Setuko Miyagawa
Ms. Okemi Oshima
Mrs. Etsuko Touno
Mr. Masakuni Fujiwara
Mr. Kouichi Iwase
Mr. Osamu Morofuji
Mr. Himoto Rumiko
Mr. Mitsuhiro Tsuchiya
Mr. Masakuni Fujiwara
Mrs. Atsuko Izawa
Mr. Kazuo Muto
Mr. Hiroshi Sakagami
Ms. Yoneko Tsukamoto
Mr. Buntaro Fukuda
Mr. Youichi Kamiyauch
Mr. Masayoshi Nagahama
Ms. Yuko Sakai
Mr. Yutaka Tsukamoto
Mrs. Hiromi Fukunishi
Mr. Takao Kanamori
Mrs. Mitsuko Nakai
Mrs. Kazuyo Seko
Mr. Susumu Ukita
Mrs. Yoshiko Hara
Mr. Keizo Kanehara
Ms. Junko Nakamura
Miss Rieko Shimizu
Mr. Shigeo Uno
Mrs. Atuko Hashimoto
Mr. Takehisa Kaneko
Mrs. Mihoko Nakamura
Dr. Akira Shirai
Mr. Hiromasa Yamamoto
Mrs. Takahashi Hatsui
Mr. Ysusi Kaneko
Mrs. Fusako Nakano
Mr. Akira Sugano
Mr. Takekazu Yamamoto
Mr. Teruo Hayashi
Ms. Hata Kazuko
Mr. Yoshihiro Nakano
Mr. Jun Sugimoto
Mrs. Chiharu
Mr. Yoshihide Hayashi
Mr. Masao Kinutani
Mrs. Masa Nishihara
Mr. Kazuki Sugino
Yamanouchi
Mrs. Kayoko Hirata
Mr. Kyoichi Kobayashi
Mr. Shinjiro Nomura
Mrs. Noriko Suzuki
Mrs. Kisae Yanagawa
Mr. Hitoshi Hisano
Mr. Sadao Kofuji
Mr. Takeo Ohki
Mr. Kaoru Taguchi
Mr. Masaomi Yanagisawa
Mrs. Tomoyo Horio
Mrs. Yumiko Kouzaki
Ms. Ikumi Ohkubo
Miss Yasuko Taguchi
Mr. Takeshi Yasui
3
Mr. Shouji Ideishi
Mr. Kazuhiro Kurihara
Mr. Kunihiko Ohkubo
Mr. Masayashi Takagi
The IMF is dedicated to improving the quality of
MELPHALAN AND PREDNISONE
life of myeloma patients while working toward
STILL THE RIGHT THERAPY FOR MANY PATIENTS WITH MYELOMA
prevention and a cure.
by Morie A. Gertz, MD
comparison is fraught with difficulty and
IMF Headquarters:
and Angela Dispenzieri, MD
conclusions drawn from these types of stud-
2129 Stanley Hills Drive
ies are not as powerful as studies where treat-
Los Angeles, CA 90046, USA
Much progress has been made in
ment is determined by the "toss of a coin."
(800) 452-2873
the treatment of multiple myeloma over the
Stem cell transplantation usually
Fax: (323) 656-1182
past 30 years. Improved supportive care,
requires an initial phase where chemothera-
E-mail: TheIMF@myeloma.org
methods to reduce the impact of impaired
py is given through a catheter in order to
kidney function, modern antibiotics, and
IMF President:
prepare patients for an adequate stem cell
bisphosphonates for reduction of skeletal
Susie Novis
(seed) collection. At some centers, this type
events have all been important steps forward
of treatment requires four days in the hospi-
in enhancing the quality and quantity of life
IMF Vice President:
tal every month, and the presence of an
in patients with myeloma. Recently, the use
Amy Nielsen Palumbo
indwelling, intravenous catheter can result
of erythropoietin has been shown to be
in complications such as infection or clot-
US Staff:
effective in selected patients with multiple
ting. Also, since stem cell transplants are
Suzanne Battaglia (slbattaglia@myeloma.org)
myeloma in reducing their dependency on
generally not done at community hospitals,
Romi Pfister (ripfister@myeloma.org)
transfusion. These supportive regimens are
many patients need to travel to specialized
Renee Rape (rlrape@myeloma.org)
critical to ensuring the best possible quality
centers in order to receive this treatment
Ruth Lippmann
of life for patients with multiple myeloma.
from experienced teams.
Carole Menacker
It is important to recognize that no
Transplants also carry some risk.
two patients with myeloma are alike.
IMF (Philadelphia)
During a transplant, the patient's immune
Therefore, it would be
2124 Mt. Vernon Street
system is destroyed,
naive to think that
For patients who are older or are not
Philadelphia, PA 19130
albeit for a short peri-
there is only one
interested in a rigorous approach...
(215) 236-0400
od of time. During
treatment regimen
Fax: 215-236-1400
melphalan and prednisone remains
this time infections
E-mail: anpalumbo@myeloma.org
that is correct for all
a reasonable choice
commonly occur,
patients with multiple
though the majority are successfully treated
IMF (UK)
myeloma. The purpose of this article is to
with antibiotics. Occasionally, however,
9 Gayfield Square
assist the patient in making decisions about
overwhelming infection develops in the
Edinburgh EH1 3NT Scotland
appropriate treatment.
form of either blood poisoning or double
(44) 0131-557-3332
Over the past ten years, definite
Fax: (44) 0131-556-9720
pneumonia, and the patient succumbs as a
benefits have been demonstrated in the use
E-mail: myeloma@myeloma.org.uk
consequence of the transplant. In our expe-
of stem cell transplantation in the manage-
rience, the ability to procure adequate num-
ment of patients with myeloma. One study
IMF (UK) Executive Director:
bers of seed cells from older patients is a bit
in which patients had their treatment decid-
Eric Low
more difficult than in younger patients.
ed by the "toss of a coin", with one half hav-
Furthermore, the rehabilitation period fol-
IMF (UK) Staff:
ing a transplant and the other half having
lowing the transplant can often take as long
Christy Browne
traditional chemotherapy, demonstrated
as six months in older patients, and during
Susan Hamilton
some survival benefit for patients receiving a
this time these patients typically have signif-
transplant. This study, however, demon-
icant fatigue and loss of stamina which
Myeloma Today is published quarterly by
strated that transplant is not a cure for the
impacts on the quality of their lives.
the International Myeloma Foundation.
disease and that for some patients the sur-
It would be wrong to specify a spe-
vival prolongation is less than hoped.
Editor:
cific age cutoff for transplantation. We all
Moreover, this study excluded patients over
Marya Kazakova
know patients who are 50 years old and look
the age of 65 and patients with any degree of
The information presented in
like they are 75. Conversely, we all know
impaired kidney function. Finally, patients
Myeloma Today is not intended to
patients who are in their late 60's and look
had to be physically fit to participate in this
take the place of medical care or the advice of
like they are in their early 50's. It is this bio-
a physician. Your doctor should always be
study. Patients who were confined to bed or
logic age which we believe is far more
consulted regarding diagnosis
chair as a consequence of myeloma-related
important than chronologic age, and this
and treatment.
complications were not considered candi-
must be taken into account when counseling
dates for transplants because the risks to
the pros and cons of the various treatments
them were deemed excessive.
WE WELCOME YOUR INPUT
available for multiple myeloma.
There have been studies looking at
Please send your comments and submissions
What is melphalan (alkeran) and
transplantation in patients over the age of
for future issues of Myeloma Today to:
prednisone? Melphalan is a class of drugs
65 and in those with impaired kidney func-
called alkylating agents. This medication
tion which have suggested benefit. These
Marya Kazakova
has the ability to poison the DNA (the
types of studies compare modern-day
The IMF
"blue-print") of cancer cells making it
patients with patients who were treated
2129 Stanley Hills Drive
impossible for them to divide and ultimately
years earlier, during a time when the bene-
Los Angeles, CA 90046
resulting in their death. Prednisone is a
fits of erythropoetin and new antibiotics
E-mail: mkazakova@myeloma.org
4
were not available. This type of "historical"
Please see page 14
ANEMIA: WHAT TO DO IF YOU'RE TIRED OF BEING TIRED
Between doctor visits, lab tests,
Hb count is between 14.0-18.0 for men, and
quick but temporary results, many physicians
treatments, and the time and mental energy
12.0-16.0 for women.
try to avoid them because of potential risks,
you exert learning
such as fever, allergic disorders, infections
Recognize the Effects
about your condi-
and suppression of the immune system in
of Anemia
tion, you have
about 20% of cases.
While the symp-
good reason to be
An alternative that is gaining in use
toms of cancer fatigue
tired! But it's
is a drug commonly called EPO or by the
are often reported as
important that you
brand name PROCRIT®. The medication is
feeling tired weak,
don't confuse a
a genetically engineered version of the
worn out, drained,
normal amount of
body's natural hormone, erythropoietin, that
"wiped out" there are
fatigue resulting
stimulates the bone marrow to produce red
other important ones to
from what you're
blood cells. Given by injection, the medica-
identify as well, includ-
going through with
tion may reduce the need for transfusion,
ing shortness of breath
a more serious
and may improve a person's ability to engage
after light activity, diffi-
fatigue that can be
in everyday activities and cope with their
culty climbing stairs or
brought on by ane-
disease.
walking short distances
mia associated with
Other tips for coping with fatigue:
and difficulty perform-
myeloma and its
· Plan your day so you have time to rest;
ing ordinary tasks, such
treatment.
· Take short naps and breaks;
as cooking, cleaning, taking a shower or mak-
Cancer fatigue is often described as
· Eat nutritious foods;
ing the bed.
a total lack of energy or debilitating exhaus-
· Drink plenty of fluids;
Cancer fatigue can also have mental
tion that can last days, weeks or months. It
· Take short walks or do light exercise
and emotional effects: difficulty concentrat-
is the most common side effect of cancer and
when possible;
ing, trouble thinking clearly and making
its treatment, affecting more than three-
· Keep a diary of how you feel each day to
decisions. The condition may also underlie
quarters of people undergoing therapy. Even
help you plan your daily activities;
feelings of low self-esteem and frustration,
though it is so prevalent, cancer fatigue is
· Save your energy for the activities that
often resulting in feelings of helplessness or
often still overlooked, under-recognized and
are most important to you;
despair. Changes in sleep, daily activity or
undertreated.
· Ask for help if you need it;
eating patterns can cause fatigue, as can anxi-
· Join a support group;
Cause and Effect
ety, depression or stress.
· Talk to your nurse or doctor about treat-
As discussed in the last issue of
Furthermore, cancer-related fatigue
ment for fatigue.
Myeloma Today, the causes and effects of
may make it increasingly difficult for individ-
Resources are also available to help
fatigue are complex, and there is no estab-
uals to cope with cancer and can sometimes
you. For example, you can visit the
lished method to assess it. Individuals with
prevent them from reaping the full benefits of
Oncology Nursing Society's new Web site:
myeloma and other cancers may not report it
available treatments. Because the condition
www.cancerfatigue.org. This interactive site
and clinicians may be focused on other indi-
can significantly interfere with a person's
provides information about fatigue in
cators.
sense of well-being, it may limit the number
English and
However, one of the most common
of chemotherapy cycles
Spanish, and
causes of cancer-related fatigue is anemia.
that could be administered,
allows you
Anemia is a condition in which decreased
which may hinder the
and your care-
numbers of red blood cells prevent sufficient
effectiveness of treatment
givers to ask
oxygen from reaching body tissues. Anemia
altogether.
an oncology
is a common complication of cancer and
There is Help
nurse confi-
treatments, such as chemotherapy and radia-
The good news is
dential ques-
tion therapy, which can interfere with the
that the known causes of
tions about
supply of red blood cells by inhibiting the
cancer-related fatigue can
cancer-related
production in the bone marrow. Anemia can
be treated and possibly
fatigue and
also result from blood loss during surgery.
relieved, at least to some
receive quick
Two lab tests reflect the level of
degree. Proper nutrition,
answers.
anemia. The first is "hematocrit" or "HCT",
vitamin and mineral sup-
As you
which is the volume of red blood cells in the
plements, anti-depressant
search for
blood, usually expressed as a percentage of
and anti-anxiety medica-
information
total blood. The second is "hemoglobin",
tions, lifestyle modifica-
and help,
often abbreviated as "Hb", which is the iron-
tions and even psychological counseling can
remember you aren't alone. Talk with your
containing protein present in red blood cells
help to alleviate the problem.
doctor or nurse, who may be able to provide
that transports oxygen and carbon dioxide to
To treat the anemia that contributes
treatment and help you to return to the
nourish a person's body tissues.
to fatigue, oncologists have traditionally
active lifestyle you remember. Learning
The ranges of HCT and Hb vary,
relied on blood transfusions to raise red blood
more about cancer anemia and fatigue is the
depending on your age and whether you're a
cell levels and help restore energy, if only
first step to overcoming it. ß
man or a woman. For example, the normal
5
temporarily. Although transfusions can bring
IMF (UK) UPDATE
News & Notes
First Annual National Myeloma Awareness Day Report
New Amyloid Information
by Susan Hamilton
time when things were not so good. After
IMF (UK) has produced two new
Shirley's stem cell transplant, she could only
June 21, 1999 saw the first annual
information booklets about AL Amyloidosis,
manage a few steps at a time with the sup-
IMF (UK) National Myeloma Awareness
a bone marrow disorder related to myeloma.
port of her husband. A year on Shirley's five
Day. Planned to coincide with the
About 10-15% of myeloma patients have co-
mile walk raised £1,600. Her husband raised
existing AL Amyloidosis. "AL Amyloidosis:
"European Week Against Leukaemia,
an additional £200 at his work, for a grand
an Introduction" and "AL Amyloidosis: the
Lymphoma and Myeloma", this event was
total of £1,800.
Basics" are available free of charge. Please
designed to improve awareness of myeloma
The Myeloma Golf Classic, orga-
call 0800 980 3332 if you would like a copy
in the UK and raise vital research funds.
nized by Kevin Gleeson, a dynamic young
of these booklets.
The event was a huge success: total funds
patient, raised £2000 with the help of Aer
raised to date amount to over £25,000 with
Dublin Seminar Postponed
Lingus. This event is to become a yearly fix-
donations still coming.
The IMF (UK) Patient & Family
ture on the IMF (UK) fundraising calendar.
Prior to the event, IMF (UK) dis-
Seminar planned for Dublin must be post-
Jan Cuff sponsored a "stay awake". Jean
tributed over 200 Awareness Day Action
poned. We are trying to secure alternative
Surplice sponsored aerobics. Musical events,
Packs, from Aberdeen to Cornwall, encour-
funding sources and are confident the semi-
raffles, coffee mornings, evenings out and a
aging IMFers to display posters, contact
nar will take place before the end of the
golf tournament were also held.
year. IMF (UK) would like to apologize for
local press and organize fund-raising events.
Proving that the pen is indeed
any inconvenience and hopes it will be visit-
As June 21st is the longest day of the year,
mightier than the sword, many IMFers,
ing the Republic of Ireland very soon.
more sunlit hours meant more fund-raising
including Eddie Cooper of the Finchley
hours, and our members put the extra day-
Area Support Group in London, began
UK Myeloma Today
light to good use!
After much discussion with readers,
donation chain letters or wrote to large com-
Josie Dobrin organized an evening
patients, doctors, and the IMF Boards, it has
panies asking for their support. A new
of laughter at The Comedy Store in
been decided that a UK supplement will be
donation has arrived at the IMF (UK) office
London. Josie and her team once again
enclosed with each issue of Myeloma Today.
nearly every day as a result of this simple
achieved a momentous fund-raising feat and
The IMF (UK) felt that a supplement dedi-
fund-raising method.
proved that laughter really is the best medi-
cated to UK news and updates would be use-
Splashes of the maroon IMF (UK)
cine. Some of Britain's top television per-
ful. It will include profiles of patients and
Awareness Day poster have appeared on the
healthcare professionals, local fundraising
sonalities and acts kept the 400-strong audi-
walls of Doctors surgeries, community cen-
news, readers' letters, NHS news, practical
ence enthralled. A grand total of £15,000
tres, and supermarkets. Local newspapers
help and details of upcoming events. The
was raised.
carried articles on fundraising events and
IMF (UK) hopes to have its first supplement
Shirley Burchell of Maple Cross in
editorial reports on personal battles with
ready for the winter issue. If you have any
Hertfordshire and her husband took on the
interesting news or stories which could be
myeloma of Tony Hampson and Bertram
challenge of a sponsored walk. Their inspi-
included in one of the editions, please con-
ration for the walk came from thoughts of a
Please see page 15
tact Christy Browne, 0800 980 3332.
Manchester Seminar and Clinical Conference
The IMF (UK) held their first
Prof. Brian G.M. Durie from the US played a
Clinical Conference on June 25, 1999, as
pivotal role, discussing current approaches in
the "European Week Against Leukaemia,
treatment and bisphosphonates. Transplan-
Lymphoma and Myeloma" came to a close.
tation and the UK Myeloma Forum were
The Christie Hospital in Manchester joined
covered by Dr. Steve Schey from Guy's
forces with IMF (UK) to welcome experts
Hospital, London. Dr. Raymond Comenzo
from the US, Europe and Britain. Doctors,
from the US discussed Amyloidosis. Nurse
nurses and healthcare professionals from
Tracy King from Hammersmith Hospital,
around the UK were invited to attend this
London covered the subject of patient
one day clinical symposium focusing on the
empowerment. Dr. Joan Blade from
disease biology, accomplishments of recent
Barcelona, Spain presented an informative
years and global trends to combat myeloma.
talk on common complications and renal
Eric Low accepting Website sponsorship from Andrew Waiton.
This meeting was made possible by sponsor-
disease.
IMF (UK) Website Sponsorship
ship from 11 pharmaceutical companies and
After each talk, attendees posed
For the second year, the IMF (UK)
the receipt of an educational grant from the
questions pertaining to their individual
received sponsorship for their Website.
British Society of Haematology.
treatments and quality of life issues. Doctors
Andrew Waiton of Boehringer Ingleheim
Manchester was also the site of
and patients alike gained from the opportu-
presented a cheque for £7,000 to Executive
another IMF (UK) Patient & Family
nity to share their experiences.
Director Eric Low at the recent Manchester
Seminar of 1999. More than 200 attendees
The IMF (UK) would like to thank
Clinical Conference. The Website, which
had the opportunity to learn from experts
Novartis Pharmaceuticals for the unrestrict-
has become a vital form of communication,
from around the globe about myeloma, treat-
ed educational grant which funded this
receives an average of 54 visits a day. An
ment strategies and research developments.
meeting. The foundation would also like to
increasing amount of new members are
The meeting began with an introduction
thank all those who attended and made this
reaching the IMF and gaining access to vital
from Eric Low of the IMF (UK) and Prof.
a successful meeting. ß
6
information through this medium. ß
Howie Scarffe of The Christie Hospital.
MYELOMA PATIENT ADVOCACY
The Search for a Cure
June Brazil Joins CAPCAM
Prof. Durie Joins Review
President's Note:
Board for NCI Initiative
The way to finding a cure is through
The Director of the National
research, and the most prolific cancer research entity
Cancer Institute (NCI) has challenged the
in the world is the National Cancer Institute (NCI).
scientific community to harness the power of
The IMF has engaged in a public advocacy program
comprehensive molecular analysis technolo-
in support of funding for multiple myeloma (MM)
research at the NCI and the National Institutes of
gies to make the classification of tumors
Health (NIH). Together with IMFers throughout
more informative. This challenge is intend-
the nation, the IMF has increased awareness about
ed to lay the groundwork for changing the
MM at the NCI and in Congress. Most of the effort
basis of tumor classification from morpholog-
of the advocacy program has focused on educating
ical to molecular characteristics. The NCI
members of Congress about the need to provide leg-
Director has invited investigators to form
islative authority for NCI to fund MM research.
June Brazil
multi-disciplinary research groups and to
This is done through what is called "report language"
The National Institutes of Health
submit applications proposing the exploita-
jargon for directives that express the wishes of
(NIH) has chartered a federal Cancer
tion of one or a related set of comprehensive
Congress as money is appropriated to particular agen-
cies. Directive report language to the NCI and other
Advisory Panel on Complementary and
molecular analysis technologies for the
medical research conducted at the NIH differs from
Alternative Medicine (CAPCAM). The
analysis of tumor specimens.
other types of legislation (i.e. highway projects). No
panel will serve in an advisory capacity to
Applicants may propose to develop
funds are directly earmarked for research programs.
the Director of the National Center for
comprehensive molecular profiles using
Instead, when Congress provides funding to an
Complementary and Alternative Medicine
DNA, RNA or protein-based technologies.
agency engaging in medical research, it gives it in
(NCCAM) in the assessment of present and
A further goal of this initiative is the devel-
lump sums and through directing language that
future CAM clinical trials and medical inter-
opment and implementation of a plan for
"urges", "encourages", or "recommends" research
ventions, determine potential research
timely release of the extensive data sets
agencies to address particular issues. That language
opportunities, and develop a mechanism for
expected to result from these projects.
gives Congress a yardstick by which to measure the
performance of the agency prior to the next year's
communicating research results from these
Access to these information rich data sets
appropriations cycle. In order to explain the issues
studies to key constituencies. CAPCAM is a
will benefit the entire cancer research com-
facing MM patients, the IMF submitted testimony to
joint initiative of NCCAM and the
munity and facilitate rapid progress toward
Congress on April 22, 1999. The following is an
National Cancer Institute (NCI) and is gov-
achieving the goals of the NCI. Prof. Brian
excerpted transcript.
erned by the provisions of the Federal
G.M. Durie, IMF Scientific Advisor and
Advisory Committee Act.
Chairman of the Board of Directors, is par-
Multiple Myeloma: An Incurable Cancer
"The formulation of this panel of
ticipating in this NCI initiative as a member
MM is an incurable cancer of the
plasma cells of the bone marrow affecting
experts represents a vital step towards rigor-
approximately 50,000 Americans. Research
ously evaluating the efficacy and safety of
has found that MM is more prevalent in
various complementary and alternative can-
Michael Katz Appointment
Western industrialized countries. Higher
cer therapies that demonstrate the potential
rates of occurrence have been observed in
for helping to reduce the burden of this dis-
IMF Board of Directors member
coastal, industrial zones, agricultural belts,
ease," said NCAAM Acting Director Dr.
Michael Katz has been appointed to the
and in areas with high concentrations of
William Harlan.
Adisory Committee to the Director (ACD)
population. In other words, as the world
Dr. Earnest L. Wynder, Chairman
of the National Cancer Institute (NCI).
becomes more industrialized, it is not illogi-
of CAPCAM, is President and Medical
The ACD is responsible for coordinating
cal to assume that rates of MM incidence
Director of the American Health
NCI planning and advisory activities and is
will rise accordingly.
Foundation and Clinical Professor of
chaired by NCI Director Dr. Richard
Community and Preventive Medicine at
Klausner and includes the chairs and select-
The NCI and Myeloma Research
New York Medical College. An additional
ed members of the NCI Board of Scientific
By its own admission, NCI con-
14 members represent a broad range of
Counselors, the National Cancer Advisory
ducts a "modest program of research related
expertise in the fields of complementary and
Board, Board of Scientific Advisors, and the
to MM." Using a conservative approach,
alternative or conventional medicine, clini-
Director's Consumer Liaison Group, as well
NCI estimated that it awarded $11.7 million
cal trials, biostatistics, oncology, pathology,
toward MM research in FY 1999. That fig-
as key NCI staff. ß
radiology, and bioethics, and who share a
ure included $5.4 million for 22 new and
common interest in advancing research in
non-competing grants with at least 25% of
Steve LeBlanc Appointment
this field. IMFer June Brazil, a Clinical
the research effort directed toward MM. In
Professional Associate of Acupuncture and
IMFer Steve LeBlanc has been
addition, NCI stated only 8 of 24 approved,
Oriental Medicine at Mercy College in New
appointed as a patient representative to the
competing grants with at least 25% of the
York, has joined this advisory panel.
Eastern Cooperative Oncology Group
effort directed toward MM were funded.
To obtain an agenda for CAPCAM
(ECOG) Data Monitoring Committee
These figures need to be put into perspec-
meetings, please call (301) 594-2013 or
(DMC). The DMC oversees the clinical
tive. MM diagnoses represent 1% of the
access this information from NCCAM's
trials conducted by ECOG. ß
7
Please see page 12
FUNDRAISER TOPS $150,000 TO SUPPO
The IMF and CBS "Family" Work Together to Fund Brian
medical family, my
"People should begin to recognize that
For a
Stamford, CT family,
their fellow citizens are suffering from
long time, I
my Greenwich family,
couldn't deal
this. Events like this get people's con-
my Brooklyn and NYC
with the success
sciousness raised. I will never read an
family. There's the new
of this event. I
and essential family;
article about myeloma without remem-
found it terribly
the IMF, who speak the
bering this evening." - Rita Braver
embarassing.
language and walk the walk that only some-
But this is not about me. I am not in this
one with myeloma can understand. And last
alone. There's not a person who hasn't felt
but not least, there's just plain family;
the burden of cancer. We either have it, or
Marcy, my wife and best friend; and my kids,
had it, or our parents have it or had it. It
Lisa and Julie, Joan and Dan.
attacks our children. It has poisoned our
Lisa, Dan, Julie, Marcy, Elliot, and Joan Bernstein
It's been a year since I learned that
friends, our colleagues, our loved ones.
by Elliot Bernstein
I had myeloma.
This is about coming together to
"It's such a good feeling to see all these
I had never
fight back. Refusing to give in. And, yes, it's
I have a
people here for our dad." - Lisa
heard of it. I
about raising money for research. But it's
dream. In my dream, I
"We can't do a lot of the things together had known
get a phone call. A
that we used to, so I learned to love and something was
voice exclaims, "Have
appreciate him in different ways." - Dan seriously wrong
you heard! They found
with me...
"The outpouring of support for our
the cure for cancer!"
Something was
"Which cancer?", I
father gives us hope." - Julie
knocking me
reply. "All cancer,"
"Many people extended themselves to us out, slowing
says the caller. "What
and we wanted to give back." - Marcy
me down, hurt-
about myeloma?", I
"It's very special that my dad's wife and
ing me, turning
ask. The caller
what had
friends got this to happen." - Joan
WCBS sports commentator Warner Wolf keeps the bidding going.
answers, "What's
always been
also about raising awarenes. The victims of
that?" And after I explain, the voice says,
exciting adventures as a Sunday Morning
myeloma are on the rise. Yet no one knows
matter of factly, "The cure is universal!"
field producer, into exhausting and painful
about this killer unless it strikes home.
This dream will come true. It sure-
ordeals. Then, after at least two years of
There's got to be a screening process for
ly will happen. Being part of what culminat-
complaining and a lot of
early detection.
ed at the Greenwich, CT home of my dear
doctor's visits, a CT scan
"My father died in 1957. He
We are not cow-
friends Mort and Sara Richter has convinced
found the cancer. And
ering from this disease.
was one isolated man who
me. It's the same process that will free us of
everything changed.
Doctors are saving
this plague... a coming together of energy, of
suffered and died from myeloma,
I plunged into
lives every day.
creativity, of intelligence, of long, long
a disease nobody knew about.
that world of chemothera-
Medical reasearchers
hours of hard work and planning; a singulari-
py and steroids, of stem
It's essential that there is an
are attacking cancer
ty of purpose to find the means to find the
cell transplants and blood
organization such as the IMF
cells on a variety of
cure; to find a way to learn about and talk
cell counts; of catheters
fronts. Together, we
because it means there's a pool-
about and speak out about multiple myelo-
and IVs, and self-injec-
will find the cure!
ma, one more insidious version of this dis-
ing of resources, information,
tions; of radiation, of
Together we are
ease, this killer, called cancer.
help and support available to
interferon, and more
giving the dream its
And what a coming together it has
steroids; a world where
patients." - Martha Teichner
been. My CBS Sunday Morning family, my
you learn once and for all how to spell nau-
Greenwich Reform Synagogue family, my
sea and diarrhea; where you can dial the
numbers for Blue Cross/Blue Shield in total
darkness, a world of endless fatigue and
sleepless nights, of hair loss and weight loss.
And as I slipped deeper and deeper
into a new and difficult place, I worried
whether anyone back in the world I had all
but left behind the world I loved so much
would remember me. Will they let me
back in? Or had I slipped away forever, lost
my citizenship. Back there, was I becoming
"Whatever happened to what's his name?"
Inside the silent auction tent.
Elliot Bernstein, Susie Novis, Marcy Bernstein, Prof. Brian Durie
PPORT MULTIPLE MYELOMA RESEARCH
an D. Novis Reasearch Grants in Honor of Elliot Bernstein
"I am truly touched by the outpour-
just goes to show what people can accom-
ing of help and support we have received in
plish when they work together," said Susie
planning this event," said Elliot Bernstein.
Novis, president of the IMF. "The IMF has
"It is so overwhelmingly gratifying to see so
a long history of supporting multiple myelo-
many people come together, all united by
ma research and we are honored by the abil-
the common goal of one day eradicating this
ity to now fund not one, but three additional
devastating cancer."
research grants this year in the name of
The festivities began with a cock-
Elliot Bernstein."
tail reception and silent auction of items
The proceeds of the fundraiser will
including a three-day Greenbriar Golf
be used to fund $40,000 research grants as
Getaway donated by the Greenbriar Resort
part of the Brian D. Novis Research Grant
in North Carolina, a one-week stay at a
Program. Created in memory of IMF
Shelter Island beachfront cottage, courtesy
founder Brian D. Novis, the grants promote
Congressman Christopher Shays and Elliot Bernstein
In an
of a CBS produc-
"We have made some real strides in
inspiring display of
er, and a dinner
support and dedi-
research in a number of diseases. And
party with Billy
cation, Sunday
there's so much we can do. We just need Taylor. WCBS
Night with Sunday
sports commenta-
to make sure we have funding on the
Morning, a gala
tor Warner Wolf
Federal level. We also need to encourage
fundraiser to sup-
hosted a live
people who have the financial resources
port the IMF,
sports auction fol-
raised more than
privately to help as well. So I am here to lowed by a final
$150,000 for mul-
lend my support." - Congressman Shays
auction with the
tiple myeloma research. The fundraiser, co-
Braswell
chaired by Greenwich, CT residents Trudy
Galleries. Many of the auction items were
Selib and Sara Richter, took place on
so popular, the donating party made an on-
Billy Taylor, Elliot Bernstein, Charles Osgood
the-spot decision
and support
Sunday, June 13th.
"I knew nothing about myeloma until Elliot
to provide a sec-
research into bet-
was diagnosed. I hope the money raised
ond donation of
ter treatment,
today has a quick effect." - Billy Taylor
the same item. In
management,
total, the silent
"When somebody in our professional family prevention and a
and live auctions
is diagnosed, somebody that is as good a
cure for multiple
netted more than
myeloma. One
friend as Elliot, it makes you very aware.
$93,000.
of the primary
His many friends in the media will help
Mr. and
purposes of the
raise awareness." - Charles Osgood
Mrs. Bernstein
Brian D. Novis
first approached the IMF with the idea for a
Research Grant is to provide seed money for
fundraiser in December 1998, six months
innovative projects with the hope that the
after Elliot was diagnosed with multiple
projects selected will be so promising, they
Sara Richter, Marcy Bernstein, Trudy Selib
myeloma. Their original goal was to raise
will attract additional funding for further
$40,000 to fund
study of the topic area. The research grants
Held in
"We felt that raising money was the only one IMF Brian D.
will be awarded on December 4, 1999 in
honor of Stamford
way we could make an impact. We were
Novis Research
New Orleans at the American Society of
resident and CBS
Sunday Morning
thinking quite small. We had no idea that Grant in honor of
producer Elliot
Elliot Bernstein.
it was going to blossom into an evening of
Bernstein, the
Their efforts were
this proportion." - Sara Richter
event drew an
so successful that
"We put the arm on everyone we knew.
impressive crowd
through ticket
We called in every chip we had. And peo-
including
sales and pre-
Connecticut
ple really came through." - Trudy Selib
event donations
Congressman Christopher Shays, esteemed
alone, the team had exceeded their goal
jazz musician Billy Taylor, CBS Sunday
prior to the fundraiser. At last count,
Morning host Charles Osgood, CBS news
Sunday Night with Sunday Morning raised
correspondents Martha Teichner and Rita
more than $150,000, with additional dona-
Braver and WCBS-TV (New York)
tions arriving almost daily.
anchor/reporter Dana Tyler.
"This type of tremendous success
9
MT: What developments are taking place
work centres around studying established
Myeloma Today Profile -
in your centre?
myeloma, we have also found genetically
continued
Dr. Child: One of our "claims to fame" in
determined differences in some molecules
MT: Please tell us about your interest in
Leeds is HMDS (Haematological Malignan-
(tumour necrosis cytokines) that influence
clinical trials, particularly the MRC studies?
cy Diagnostic Service). We receive patho-
the growth of myeloma cells which may
Dr. Child: In order to ensure that our treat-
logical samples from a wide geographical
actually predispose some individuals to the
ment approaches in myeloma are appropri-
area for central review. This underpins our
development of the disease. Like many oth-
ate and effective, it is necessary to subject
clinical role in assessing patients in the cen-
ers we were excited by the reports of the
them to critical analysis and review. The
tre, advising on treatment strategies and pro-
new herpes virus HHV-8 in myeloma bone
experience of the individual clinician in
viding some specific forms of treatment such
marrow and the subsequent interest in the
treating the disease is certainly of impor-
as transplants. This is in tune with the
role of the dendritic cells. Obviously, every-
tance, but the therapeutic options in a given
national "Calman initiatives" for the organi-
one is hoping for new immunotherapy based
situation need to be
sation of cancer services in
on this, but at the moment much more basic
guided by the collective
The MRC has had a seminal
the UK. Key areas of our
information is required. I was, therefore,
data. Similarly the pilot
influence in designing and
research program have
delighted when we were able to arrange for
work undertaken by
carrying out large scale trials. grown as a consequence of
one of our promising young researchers,
centres pioneering new
this role in diagnosis and monitoring. We
Faith Davies, to spend a year in Boston with
forms of treatment has to be analysed criti-
are fortunate in having drawn together a
Dr. Ken Anderson's group working in this
cally and then, when appropriate, subjected
strong team over the last few years. With Dr
particular area. We await developments!
to multicentre trials of adequate size to
Andrew Jack developing HMDS and
determine whether or not the new approach
MT: What about the role of transplantation
Professor Gareth Morgan and myself direct-
confers a statistically proven advantage to
for myeloma? When is the best time to
ing a clinically-orientated research program
patients in terms of objective response and
transplant and who are the candidates?
and with some excellent young researchers
ultimately survival. The MRC has had a
Dr. Child: Our ability to deliver intensive
in the team, we have the basis for making
seminal influence in designing and carrying
chemotherapy safely, now usually with sup-
significant contributions. In addition to
out large scale trials. A more recent initia-
porting autologous peripheral blood stem
monitoring the blood and marrow changes
tive has been to carry out international
cell transplant, has been something of a
in patients treated in the MRC Myeloma
overviews based on analysis of the data from
watershed. We still need much more infor-
VII Trial, we plan to continue to expand our
the major trials worldwide in order to con-
mation to fully evaluate the therapeutic gain
work in myeloma. We are keen to explore
firm trends and guide clinical practice.
for patients, hence the importance of large
those factors which modulate the behaviour
Overviews on trials of standard melphalan
randomised trials such as those being carried
of the myeloma cell after treatment to find
and prednisolone versus combination
out by the MRC. It is already clear that we
out why relapse occurs and how to inhibit
chemo-therapy and of -interferon have
have not yet developed curative treatment.
disease progression.
been carried out by the Clinical Trial
However, the fact that we can achieve very
Service Unit in Oxford on behalf of The
MT: What are your current research inter-
low levels of disease is something that we
Myeloma Trialists' Collaborative Group,
ests, either linked to trials or outwith that
can now build on. As our experience grows
which has wide international representa-
setting?
and data accumulate we may be able to
tion. As a clinician concerned with treating
Dr. Child: The "add-on" studies linked to
become more precise as to whether and
patients with myeloma I became involved
the MRC Myeloma VII Trial represent an
when to offer this treatment to the individ-
with the MRC trials as a participant from
important aspect of the laboratory research
ual patient. Although the safety margin has
the mid 1970's. In the early trials the
which we are currently undertaking in
improved with experience, we must remem-
importance of a high fluid intake in prevent-
Leeds. Using molecular
ber that these treat-
The presence of the IMF in the
ing or reversing kidney dysfunction was
techniques we are
ments are still quite
UK with the establishment of the
established the basis for guidelines which
assessing the often very
an undertaking and
office in Edinburgh has resulted in
were generally adopted in the UK. In a suc-
low levels of myeloma
that there is associat-
increasing awareness of the disease
cession of randomised trials, the most effec-
still present after treat-
ed toxicity.
tive treatment from the previous trial has
ment and monitoring
and of developments in treatment.
Although we call
been tested against the newer approach a
any changes in that status. Identifying cells
these stem cell sup-
logical progression which has seen the evo-
belonging to the myeloma clone as opposed
ported treatments "transplants", we should
lution towards the newer, more intensive
to the non-malignant plasma cells is now
probably reserve this term for allogeneic pro-
forms of treatment. A key aspect of the cur-
possible and identifying these cells at various
cedures when bone marrow from a tissue
rent MRC Myeloma VII Trial is to try to
stages of the disease before and after treat-
identical donor is given. Allo-geneic trans-
assess whether the more intensive approach
ment is providing valuable information
plantation is much more likely to be associ-
to treatment, involving giving high doses of
which will help us to find out more about
ated with serious toxicity and is currently
the well established drug melphalan with
how the disease evolves and the way in
not undertaken without very careful consid-
supporting autologous transplant confers a
which it recurs following treatment. The
eration and usually only in relatively young
survival benefit in comparison with the
study of molecules on the surface of the
myeloma patients. In addition to clearance
"standard" less intensive treatment. An
myeloma cell can provide potentially impor-
of myeloma cells with the associated inten-
important aspect is to systematically assess
tant information about how the cell will
sive chemo/radiotherapy (as with an auto-
the gain in terms of the quality of life and
behave and, therefore, have prognostic sig-
graft), there is the additional probability of a
also to determine whether or not the more
nificance. We are also looking at genetic
significant "graft vs. myeloma" effect. In
complete eradication of tumour is of particu-
differences and gene mutations and the con-
common with other groups around the
lar relevance.
sequences of these. Though much of this
10
Please see page 14
CHOOSING LIFE: A Personal Struggle with Myeloma
honor your choice." Pat's impassioned plea
wheelchair and was lowered by hydraulic lift
by Richard W. Froemke
for me to choose life brought me up short
into the water, but soon I was waltzing in on
I am a 73-year-old survivor of
even in a fuzzy minded state. My denial had
my own! Now I work out 20-30 minutes 6
WWII's Battle of the Bulge, and a retired
been so complete I had allowed myself to
days a week (3 in the pool, 3 in the weight
Administrator of Federal Grants for the
drift slowly toward physical destruction.
room.)
State of Florida, used to being in charge of
Pat began the crucial process of
My true love is radio, having been
my life. When I retired in 1991, my wife
learning as much as possible about MM,
in media for over 50 years, the last 17 with
and I envisioned an active life of community
researching medical texts at the library, surf-
National Public Radio. Even at my lowest
service and travel. However, in January of
ing the Internet,
period I was somehow able to
The key to my survival has been
1995 increasing back pain became a prob-
and joining the
make it to the station for my
to take charge of my odyssey.
lem. By October my condition had deterio-
IMF. Through a
weekly recording session. We
rated and an MRI was recommended. The
chance conversation with her sister, and
have worked very hard to maintain our
results indicated a need for a full range of x-
with additional help from our daughter
lifestyle. We continue to travel for months
rays, bone scan, and bone marrow biopsy. In
Elizabeth, she began to explore alternative
at a time each summer. I sing in the church
error, the radiologist diagnosed osteoporosis
methods of approaching this disease through
choir, have an active ministry by mail,
and did not do the biopsy. I was happy to
herbs, vitamins, minerals and nutritional
phone and visiting shut-ins. It is crucial for
hear my problem was osteo instead of the big
supplements. Through this research, Pat
me to reach out to others, remain involved
"C". My denial began.
discovered a book, "Beating Cancer with
with them, and not dwell on my problem.
In March, against my wishes and
Nutrition" by Dr. Patrick Quillin. It became
In other words, stay positive! I can always
through the efforts of my loving wife and
our nutritional bible. Information gleaned
find someone more in need than myself. If I
family physician, I was finally correctly diag-
there provided a nutritional drink I was able
am to succeed I must choose life!
nosed . My first visit to an oncologist was
to consume, leading to weight recovery.
The key to my survival has been to
exhausting and confusing. The brief
As chemotherapy and a nutritional
take charge of my odyssey. By God's healing
encounter revealed that I probably had
program progressed, the cobwebs of my mind
grace I am alive and thank Him for each
myeloma, a disease that wasn't curable, but
began to disappear. I needed to draft a plan
day. Since being diagnosed I have become a
treatable. The oncol-
to turn the tide in the
hope addict determined to never give up.
ogist said, "If lucky,
fight to conquer this
Waging the battle and bringing MM under
you probably have
disease. Fortunately,
control is an overwhelming experience. Pat
another 10-15 years".
setting goals had
has become my leveler, instilling in me a
This led me to believe
always been my forte.
powerful maxim: choose life! By reaching
that whatever I had
Pat and I identified
out to others in need, I have helped myself,
could be handled with
the five tools to
often when least expected, by trying to be a
medication. However,
achieve our objective
blessing to someone each day. Life is not
the underpinnings of
of overcoming MM:
measured by how long one lives, rather how
my carefully crafted
prayer, positive atti-
one lives!
One doesn't battle cancer alone.
denial collapsed when
Richard W. Froemke
tude, medical treat-
It affects family and friends. It is important
we received notification to return the fol-
ment, nutrition, and physical therapy.
to allow them to join the battle. Fighting
lowing month to the "Cancer Unit" for a
She posted this list on the bath-
cancer cannot be measured in overnight
biopsy. The results confirmed MM. This
room mirror. I thought this was a hopeful
cures or instant results. It is a game of inch-
shocked me into reality. My mind swirled
beginning but she quickly reminded me suc-
es... one inch at a time.
with questions about how this disease would
cess would require being confident: I must
Since October of '98, after having
impact my life and that of my family. What
tell myself unequivocally I intended to get
taken chemo monthly for two and a half
kind of treatments would I have to undergo?
well! Pat repeatedly reminded me of God's
years, I have been in remission. I am a sur-
Would I lose my hair? Would the medica-
never-ending healing grace expressed
vivor. You can be one too! In closing, I
tions make me even sicker?
through prayer which consists of talking and
would like to share with you a note I saw
Between January and March of
listening to God and seeking God's healing
posted in my doctor's office:
1996 the pain rapidly increased accompa-
grace in mind, body and spirit. Our prayer
Cancer is limited.
nied by other symptoms: loss of appetite (a
partners, church family and friends through-
It cannot cripple love.
loss of 40 pounds in 3 months), nausea, and
out the country prayed for me on a regular
It cannot shatter hope.
constipation. Clarity of mind gave way to
basis. A special "soaking prayer" team from
It cannot corrode faith.
incomplete thoughts and sentences. My
our church came to our home weekly for
It cannot eat away peace.
wife, Pat, became increasingly distressed as
months to conduct extended prayer sessions.
It cannot destroy confidence.
all of her efforts to provide favorite foods
Nutrition has helped me to
It cannot kill friendship.
were met with disinterest. It became obvi-
improve my immune system so my body can
It cannot shut out memories.
ous to her that recovery was not possible
better fight the disease. It also comple-
It cannot silence courage.
without my cooperation. One evening she
ments, and in some cases enhances, the
It cannot invade the soul.
confronted me, albeit tenderly, by asking me
effects of chemo. The "Dragon Slayer" drink
It cannot reduce eternal life.
a direct question, "Do you want to go on liv-
into which we add nutritional supplements
It cannot quench the spirit.
ing? Do the children and I mean enough to
has made pill-taking much easier.
It cannot lesson the power of the resurrection.
you to make you want to live? Or do you
We found a physical therapy cen-
It can be overcome. ß
11
want to continue this downward slide? I will
ter with a pool. The first visit I came in a
churches and communities, and planned
Research Abstract - continued
growth and survival of myeloma in bone.
Since the sequence of events that result in
responsibly for their retirements. They are
(LIF), parathyroid hormone-related peptide
bone destruction may also depend on this
persons who have made goals and fulfilled
(PTHrP) and 1,25(OH)2D3. We have
interaction, a better understanding of the
plans throughout their lives. The feelings of
recently found that murine myeloma
process and its functional consequences will
helplessness they encounter with their diag-
(5TGM1) cells and the murine bone mar-
offer opportunities for novel and specific
nosis runs contrary to their normal
row stromal cell line, ST2 do not express
therapeutic intervention. We anticipate that
assertiveness in attacking problems.
RANKL when cultured separately.
the proposed studies will indicate whether
Despite the fact that no causes for
However, RANKL expression was strongly
therapeutic agents designed to disrupt
MM are known, the suspected linkages
induced in co-cultures of 5TGM1 and ST2
VCAM-1/4ß1 binding or to block RANK
between environmental exposures cause
cells. This interaction is mediated by vascu-
activation will provide effective therapy
patients to live in uncertainties that some-
lar cell adhesion molecule-1 (VCAM-1) on
thing related to their careers or choice of
the ST2 cells and 4ß1 integrin on the
home may have had something to do with
myeloma cells. Treatment of 5TGM1 cells
Advocacy - continued
their illness. They wonder if by serving their
with a recombinant soluble form of VCAM-
country in foreign wars they may have
1 (rsVCAM-1), which acts as a functional
incidences of all cancers in the U.S. and 2%
exposed themselves to the things that cause
ligand for 4ß1, also induced RANKL
of the mortality statistics, yet, as seen above,
MM. They wonder if that good job at the
expression in the myeloma cells indepen-
these percentages are not represented equi-
refinery may have raised their short-term
dent of ST2 cells. Furthermore, conditioned
tably in terms of funding priorities. The FY
income at the cost of their long-term health.
media from myeloma cells treated with
2000 budget for NCI will approach $3 bil-
They wonder if those afternoons spent
rsVCAM-1 and from the myeloma cell/stro-
lion. This is not intended to be an indict-
planting the crops may have sown the seeds
mal cell co-culture induced RANKL expres-
ment; it is rather a call to action.
of an incurable disease. They wonder, with
sion in fresh cultures of ST2 cells. Taken
In order to achieve significant
new research suggesting a possible linkage
together, these data raise the possibility that
progress in MM research for the benefit of
between MM and viruses, if they could pos-
in myeloma, physical interactions between
today's patients, substantial increases in
sibly infect a loved one. They search in vain
the cell adhesion molecules expressed on the
funding and other incentives are needed.
for definitive answers because the current
surface of the myeloma cells and their lig-
Patients are confronted with the reality of
state of research is too inconclusive to
ands in the bone microenvironment play a
trying to outlive the 3-to-5 year averages
answer their questions.
critical role in initiating the sequence of
quoted at diagnosis.
events that result in the characteristic bone
The IMF supports granting NCI
Recommendations
destruction. Based on these observations,
resources to maintain better data about
The IMF rejoices in the recent
we hypothesize that: (1) Aberrant expres-
research relevant to MM and to ensure that
advances in cancer research. But our
sion of RANKL in the bone microenviron-
information is communicated throughout
patients and family members become more
ment in myeloma plays a role in the increase
the medical and patient communities. The
impatient for results the more they hear
osteoclastogenesis that results in bone
IMF is also very encouraged by the present
about advances in other fields. They also
destruction; and (2) Cell-cell interactions
NCI leadership and the forthright approach
know the uncertainties about the disease
mediated via VCAM-1/4ß1 binding are a
taken by the Director in soliciting the views
point to real public policy concerns that will
of the MM community. That circumstance
prerequisite for the increased Ocl formation.
have to be addressed. It cannot be avoided.
alone gives us hope.
Our group has developed and char-
And responding to those voices, the message
acterized a murine model of human myelo-
of the IMF is clear: We believe the time has
MM Patients: The Purpose of Research
ma bone disease in which 5TGM1 cells (or
come to direct and increase funding for
The good news of cancer research is
other myeloma cells from the 5T series)
MM research at the federal level.
The IMF
the recent, sustained reductions in overall
injected into tail veins of syngeneic
and its membership support inclusion of
cancer incidence and mortality rates. This is
C57BL/LaKwRij mice reliably cause oste-
funding and legislative report language to
are due in large measure to the leadership
olytic bone lesions which are visible radio-
grant NCI resources to:
taken by NCI. Unfortunately, MM patients
logically and can be confirmed histological-
1. review its MM research portfolio;
cannot share in that good news yet.
ly. We plan to use this model to test the
2. accelerate support of promising research;
Incidence and mortality rates continue to
above hypotheses. Specifically, we plan to
3. encourage new investigators to enter the
rise. As NCI has stated, "Progress in under-
investigate the role of cell-cell interaction in
field;
standing myeloma has been hampered by a
the growth of myeloma in bone as well as in
4. convene an NIH-sponsored Consensus
lack of a suitable model for the disease."
the development and progression of oste-
Conference to determine the state of MM
The IMF believes that NCI must take the
olytic lesions. Our approach will be to dis-
research and promising opportunities,
lead in determining answers to this basic
rupt VCAM-1/4ß1 binding in vivo using
and to make recommendations to NCI
question.
well characterized neutralizing antibody to
for further research;
Certain anecdotal trends among
VCAM-1. In addition, we will determine
5. integrate epidemiological and occupa-
MM patients seem to recur with increased
the role that tumor and/or stromal cell-
tional health research and data gathering
frequency. For example, since the mean age
induced RANKL plays in myeloma bone dis-
activities relevant to MM to learn more
for all MM patients is 60, more and more
ease in vivo using recombinant soluble
about the molecular pathogenesis of the
patients are diagnosed just at the time in
RANK fusion protein to block the interac-
disease and its suspected agents;
their lives when they expect to reap the
tion of RANKL with endogenuous RANK
6. provide funding for existing projects
rewards of their life's work. These are people
on Ocl progenitors.
approved but not funded by NCI that had
who have lived and played by the rules, paid
The interaction between the tumor
at least 25% of the effort directed
their taxes, raised their children to become
cells and marrow stroma facilitates the
responsible adults, contributed to their
toward MM. ß
12
THE TED VASIL SCHOLARSHIP AWARD
DID YOU KNOW?
complimentary registration to an IMF
... that IMF member Benson Klein has
Patient & Family Seminar.
found a solution to the annoying post-
Coping with myeloma can be stress-
transplant skin irritation?
ful both emotionally and financially. The
The solution is a lotion! After try-
Ted Vasil Scholarship will enable the recipi-
ing numerous oral and topical remedies,
ent to attend a seminar where he/she will
Benson Klein discovered that "Acid Mantle
receive both state of the art information as
Skin Acidifier" really helps. This soothing
well as emotional support. The generosity of
moisturizing cream promotes a healing envi-
this donation will enable the IMF to offer
ronment by restoring and maintaining the
one scholarship per seminar for all foresee-
protective acidity of the skin. Up to now
able IMF Patient & Family Seminars.
physicians had not realized that skin acidity
If you or someone you know is eligi-
was affected in post-transplant patients.
ble and would like to apply for this scholar-
The improvement in the skin irritation with
ship, please forward their name and contact
the use of "Acid Mantle Skin Acidifier" has
information to anpalumbo@myeloma.org or
been amazing certainly worth a try if you
by fax at (215) 236-1400. Recipients will be
have this problem. Manufactured by Doak
"pulled from a hat" of all eligible nominees
Dermatologics, a subsidiary of Bradley
one month prior to an upcoming seminar
Pharmaceuticals Inc., this cream is available
and notified immediately.
from pharmacies upon request.
Ted Vasil
Ralph Barnett of San Diego, CA was
... that there is a new product on the
chosen as the first recipient of the Ted Vasil
The IMF has created the Ted Vasil
market which has been found effective
Scholarship Award. This sponsorship enabled
Scholarship Award. This scholarship,
by some of our members with low white
him to attend the IMF Patient & Family
donated by Ted's family and friends, will be
counts, those especially susceptible to
Seminar in Los Angeles. ß
awarded to a young patient in the form of
infection?
The "Air SupplyTM" is a personal
PROTECTING YOUR SKIN AFTER RADIOTHERAPY
air purifier designed to effectively eliminate
particles such as bacteria, viruses and aller-
Any area of skin treated with radio-
been exposed;
gens from the air. It's about the size of a cig-
therapy becomes extremely sensitive and
· Some very gauzy fabric lets a lot of sun-
arette pack and is worn around the neck .
should not be exposed to the sun or cold
light through, so you may be getting more
It runs on a 9v battery. Clinical testing has
winds. For at least the first year after radio-
sunlight than you thought;
shown 95% reduction in bacteria. The
therapy, treated areas should be covered
· Swimming is allowed as soon as any skin
impact of regular use in different patient
when going out in strong sunshine.
reaction to radiotherapy has settled down,
groups such as myeloma remains to be estab-
Even after this period of time the skin will
usually within a month of finishing the
lished. However, this is something to con-
be more delicate, so extra care is needed.
treatment;
sider especially if flying or in crowded places.
· Always remember to protect your skin
What can you do to look after your skin?
The "Air SupplyTM" is manufactured by
with a waterproof sunscreen when swimming
· Use a high-factor sunscreen (SPF number
Wein Products, Inc. of Los Angeles, CA
in the sea or in an outdoor pool;
of 15 or more);
and distributed by Breathe Free Products
· Wear a hat and long-sleeved shirt to
A combination of wind and sun
(888) 434-8313.
avoid any future damage to your skin;
can be particularly hard on the skin. The
... that the technology of Bence Jones
· If you are having radiotherapy to the head
sun is strongest during the midday hours,
Protein Test is still often used but the
or neck, wear a silk or cotton scarf when
between 11am and 3pm, so take extra care
actual test is not?
going outside;
during these times. Be extra careful cover-
A doctor will often order a "urine
· Try not to fall asleep in the sun, as you
ing your skin when walking, sailing, or tak-
for Bence Jones testing", however, the test
will lose track of how long your skin has
ing part in other outdoor sports. ß
which the lab does is not the old heating-
cooling crude precipitation test but:
IMF AND MMRF TO CO-SPONSOR ASH SYMPOSIUM
·
Total protein measurement over
A Continuing Medical Education
Ken Anderson and Prof. Brian G.M. Durie,
24 hours (e.g. 1gm/24hrs);
symposium entitled "Multiple Myeloma:
will include the following topics: molecular
·
Urine protein electrophoresis
New Advances in Biology & Treatment"
biology, mechanisms and treatment of bone
(UPEP) to see if a spike is there
will be presented as part of the American
disease, appropriate testing for diagnosis and
(e.g. 30% is a spike);
Society of Hematology (ASH) 41st Annual
monitoring, standard approach to treatment,
·
Immunofixation to see if spike
Meeting. The symposium will be sponsored
the role of immunological therapies and the
is kappa or lambda (e.g. 300mg of
by The International Myeloma Foundation
current role of high dose therapy. ASH pre-
kappa/24 hours). ß
(IMF) and the Multiple Myeloma Research
registrants will receive their invitations by
"Fatigue: the more you know...",
Foundation (MMRF). The event will be
mail in October. Others interested in
published in the Summer 1999 issue of
held from 6:00 p.m. to 9:00 p.m. on Friday,
attending should contact Amy Nielsen
Myeloma Today, appeared courtesy of the
December 3, 1999, in New Orleans, LA.
Palumbo of the IMF at (215) 236-0400 or
Cure for Lymphoma Foundation.
The program, co-chaired by Dr.
the MMRF (203) 972-1250. ß
13
with other groups. This may well involve
maintain a normal lifestyle, it is an option
Myeloma Today Profile -
time in another country. As the IMF
for some patients who are weighing the pros
continued
spreads its wings, it would seem entirely
and cons of the various therapies.
world, we are now developing less intensive,
appropriate to encourage international
It would be fair to say that today at most
less toxic approaches using donor stem cells
research fellowships. Susie Novis has often
university medical centers younger patients
(so called "mini-allografts"). These sort of
emphasised the need for a worldwide effort
with multiple myeloma are selecting trans-
approaches will undoubtedly be accompa-
without frontiers in the fight against myelo-
plantation as the primary modality of man-
nied by further developments aimed at mod-
ma. I am sure that we now need to provide
agement because it has had some demon-
ulating the immune system and manipulat-
some tangible initiatives to promote this.
strated benefit in terms of survival. For
ing the biochemical networks which influ-
patients who are older or are not interested
ence the survival of the myeloma cell.
MT: When do you think patients will have
in a rigorous approach with stem cell trans-
access to curative treatment and what form
MT: What is your opinion of the IMF?
plants or are heavily focused on maintaining
is this likely to take?
Dr. Child: I have known about the IMF
continuity of lifestyle, melphalan and pred-
Dr. Child: Despite the genuine improve-
since shortly after its inception and was
nisone remains a reasonable choice.
ments in a range of treatment which all adds
delighted to be invited to join its Scientific
With the proper use of melphalan
up to better clinical management of the dis-
Advisory Board. The presence of the IMF in
and prednisone, infections as a complication
ease we still seem to be only inching for-
the UK with the establishment of the office
of chemotherapy are uncommon.
ward. The volume of scientific data on the
in Edinburgh has resulted in increasing
Melphalan and prednisone do lower the
nature of the disease has hugely increased in
awareness of the disease and of develop-
white blood cell and platelet count, but
just a few years, however, and I sense that we
ments in treatment. The series of seminars
when properly administered, these changes
are on the verge of exciting developments.
held in the UK have been very successful
are generally very modest and usually do not
Even if truly curative treatment is some way
and I have heard very favourable comments
impair the immune system to the same
off, it does seem a distinct possibility that we
from patients. Being able to access informa-
degree more intensive regimens do. Patients
will soon be able to devise strategies to sup-
tion early and keep in touch with "what's
can take melphalan and prednisone for years
press disease progression after reducing the
going on" through the IMF is clearly much
in some instances without developing serious
level of disease to an extremely low level.
appreciated. Coincidentally, those of us
side effects. Moreover, when a patient stops
Many patients today would be happy to
researching and treating myeloma in the UK
melphalan and prednisone and should the
achieve something short of cure if they were
have been working to establish closer collab-
myeloma subsequently recur later on, reuse
able to enjoy a normal quality of life in the
orative links particularly in the formula-
of melphalan and prednisone is capable of
long term. ß
tion of trials of new agents and regimens.
producing a second response.
We have now formalised this with the set-
Common mistakes using melphalan
Melphalan and Prednisone -
ting up of the UK Myeloma Forum.
and prednisone include initially using too
I see the Forum as a means of developing
continued
high a dose, basing it solely on body weight.
more synchronised research at various levels.
Commonly published schemes for the treat-
cortisone drug. Cortisone is frequently used
Its deliberations will also be of key impor-
ment of multiple myeloma commonly rec-
to treat certain forms of arthritis, and its
tance in planning the next major UK ran-
ommend one pill of alkeran for every four
anti-inflammatory properties are frequently
domised trial, which I hope will be run in
pounds of body weight each course, and for
used in the treatment of certain neurological
conjunction with the MRC. We should also
many patients this is excessive. In my prac-
disorders and disorders of immunity. The
be able to orchestrate a variety of pilot/phase
tice, I would rarely give a patient a dose
cells of multiple myeloma appear to have on
II studies (including a bisphosphonate study
higher than what I would give for a patient
their surface binding sites for cortisone and
and a phase II trial of thalidomide). The
weighing 140 pounds (maximum five pills
cortisone derivatives, and cortisone medica-
IMF has been very supportive of this initia-
daily for seven days). Failing to recognize
tions such as prednisone are actually capable
tive and I look forward to a continuing fruit-
that the effect of alkeran is cumulative can
of killing myeloma cells.
ful relationship.
result in excessive administration of medica-
The use of melphalan and pred-
tion. Virtually all patients develop a pro-
nisone was popularized in this country by Dr.
MT: What type of research would you like
gressive reduction in the white blood cell
Raymond Alexanian, a contributor to this
to see the IMF support?
count over time, and it is typical for patients
newsletter and a well-regarded authority in
Dr. Child: It seems likely that we will be
who have been on melphalan for more than
this field. Melphalan and prednisone are
"advancing on many fronts" in the battle
six months to have a white count ranging
both oral agents that are usually given for
against myeloma and it would be a mistake
between 2,000 and 3,000. Such white blood
four days every month or for seven days
to give priority to more fundamental labora-
cell reductions do not necessarily require
every six weeks. Both regimens are effective,
tory science rather than closely clinically
alkeran dose modifications since further
and one is not preferred over the other but
linked research or, indeed, vice-versa. What
treatment generally does not further suppress
rather is chosen for patient convenience.
is important is the ability to support promis-
the white blood cell count. Occasionally,
Because they are oral, hospitalization is not
ing areas of work flexibly. Communication
the interval between treatments needs to be
required. Most patients initially treated
between groups and the encouragement of
increased in order to avoid excessive sup-
have no impairment related to chemothera-
cross-fertilisation of ideas is also something
pression of normal healthy blood cells.
py. Multiple myeloma is effectively treated
which needs active encouragement. The
Although melphalan and pred-
with melphalan and prednisone although
growth in research funding provided by the
nisone is a well-established easy-to-adminis-
the effect on the protein levels is not as dra-
IMF is very much to be welcomed. I would
ter regimen, it carries one very serious side
matic as is seen with bone marrow transplan-
hope that it will be possible to support many
effect. Melphalan, as do all alkylating
tation. Nonetheless, because of its ease of
more researchers, in some cases enabling
use, the lack of side effects, and the ability to
them to spend time at other centres and
14
Please see next page
Melphalan and Prednisone -
continued
agents, has the ability to damage the normal
News & Notes
healthy seed cells in the bone marrow.
IMF Media Search
Washington D.C. Area Seminar
Sometimes this damage can be permanent
and can cause the healthy elements of the
The IMF has been working hard to raise
The Washington, DC area IMF Patient &
awareness about myeloma. Putting "a face"
Family Seminar will be held at the Ritz
bone marrow to malfunction. The most
on the disease gets our story out, reaches
Carlton in Tyson Corner, VA. The seminar
common outcome seen in approximately
newly diagnosed patients and helps increase
will take place January 28-29, 2000. Invited
7% of all myeloma patients who take mel-
research funding. We work with the press in
faculty includes Drs. Brian Durie, Robert
phalan and prednisone is called myelodys-
conjunction with the IMF Patient & Family
Kyle, James Berenson, Bill Dalton, and
plasia. Occasionally, this myelodysplasia
Seminars, clinical meetings and fundraisers.
Bart Barlogie. The Director of the National
can actually turn into acute leukemia.
Media exposure prior to the Atlanta IMF
Cancer Intitute, Dr. Richard D. Klausner,
Unfortunately, these problems when caused
Patient & Family Seminar was, in part,
will be the special guest speaker addressing
by melphalan are relatively unresponsive to
responsible for the huge attendance over
the topic of new directions in cancer
treatment and are a serious late complica-
500 patients and family members! We con-
research. Registration will commence in
tion of treatment with these agents. All
tinue to seek out patients who might be can-
October. For information, e-mail Amy
patients who make this decision must be
didates for a media story. If you are a myelo-
Nielsen Palumbo at anpalumbo@myeloma.org
ma patient interested in taking part, please
or call Renee Rape at (800) 452-2873.
aware of this risk.
send us your story (of 500 words or less) and
It remains important to remember
include the following:
that there is no one right treatment for all
· Your age;
New Internet Discussion Group
patients with multiple myeloma. We do not
· Family status (i.e., husband, father,
treat multiple myeloma, we treat patients as
number and ages of children, etc.);
"Myeloma-DR" is an international Internet
people who have multiple myeloma. Their
· Your occupation;
discussion group for physicians and allied
wishes and the experience of the treating
· When you were diagnosed;
health professionals caring for patients with
physician must all come into play at arriving
· Your awareness of myeloma prior to
multiple myeloma, smoldering myeloma,
at a mutually beneficial decision optimizing
your diagnosis;
solitary plasmacytomas and MGUS, as well
both the quantity and quality of life for
· The current status of your myeloma
as other bone marrow related disorders.
(i.e., bone/kidney involvement, etc.);
From leading experts in the field to local
patients with multiple myeloma. ß
· Any family history of myeloma;
oncologists, "Myeloma-DR" is a resource to
· The main treatment you have received.
discuss current diagnostic methods, clinical
Myeloma Awareness Day -
Please be sure to include your
treatments, follow-up tracking, research,
name, address and phone number and mail
clinical trials, and advances in the field.
continued
or fax your story to Suzanne Battaglia at the
"Myeloma-DR" is jointly sponsored by the
IMF (e-mail: slbattaglia@myeloma.org).
IMF and Association of Cancer Online
Nelson. Many supporters simply stood on
Resources (ACOR). To join, visit
busy streets and sold stickers. This increase
http://www.acor.org/myeloma-dr.html or send
in publicity has begun a ripple effect that
Support for Teens
an e-mail with your name and e-mail address
will wash over the whole country.
to myeloma-dr-list@listserv.acor.org
The IMF (UK) would like to
Cancer Care has developed a telephone support
extend a warm thank you to everybody who
group for adolescents whose parents have been
involved themselves in this day. Without
diagnosed with cancer. This group brings
MYELOMA 200
such support, the Awareness Day could not
together teens aged 14-18 with a professional
have been a success. Raising the profile of
social worker via the telephone, to discuss the
PROGRESS REPORT
myeloma requires team work throughout
challenges of having a parent with cancer. The
the country and, indeed, the world. Such
added responsibility of caring for younger sib-
Myeloma 200 Closer to a Cure
lings and providing personal care to their ailing
team work was seen in abundance on June
Fundraising Campaign has now raised over
parent can be overwhelming. This support
21, 1999. Myeloma awareness is moving
$315,000 for myeloma research. Members con-
group focuses on helping teenagers cope with
from the confines of the medical profession
tinue to find creative ways to support the cam-
balancing new responsibilities with existing
and the myeloma community into the public
paign. Here are some examples:
ones, and dealing with the emotional roller
domain. We hope you will join us next year
Susan Meckley of Orlando, FL raised
coaster inherent in being a teenager, let alone a
$640 through making candles. Susan Sears of
to build on this success. ß
teenager whose parent has cancer. For more
Grand Blank, MI raised over $300 through a
information, call the Cancer Care Counseling
can drive in honor of her father, Roger
Line at (800) 813-4673.
Donation Alert
Lamoureux Sr, then surprised him with what
she did on his birthday. "I didn't want to give
If you are making an honorary
Symposium on Skeletal Complications
him a material gift," she said. "I wanted it to be
donation that needs to be processed in time
something from the heart that would show him
The Paget Foundation, the National Cancer
for a birthday, anniversary or special holiday,
how much he means to me. This donation is a
Institute and the Pennsylvania State
please mark the outside of your envelope
gift that will benefit everyone."
University College of Medicine & Cancer
"process immediately". This will alert us
We thank all of you for your contin-
Center will jointly sponsor the Second
that your donation is time-sensitive.
ued support of Myeloma 200. If you would like
North American Symposium on Skeletal
Otherwise, your donation will be processed in
to participate, please contact Romi Pfister
Complications of Malignancy in Montreal,
Canada on October 15-16, 1999 .
15
In the next issue: Los Angeles IMF Patient & Family Seminar Report
Los Angeles Seminar faculty: Prof. Brian G.M. Durie, Dr. Gregory R. Mundy, Dr. Hector J. Rodriguez, Dr. Morie A. Gertz, Dr. Keith Goldstein, and Angela Hernandez-Carrido of OrthoBiotech
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