FEBRUARY 2002
VOLUME 4 N UMBER 9
A PUBLICATION OF THE INTERNATIONAL MYELOMA FOUNDATION
HIGHLIGHTS
The IMF Presents: Myeloma Matrix Page 1
Calendar of Events Page 2
Dear Reader,
Ask the Experts: Infection in Multiple Myeloma Page 3
Over the years, I've often heard people
Book Review: "Living Proof" Page 4
say, "You know, as odd as it sounds, being diag-
IMFer Profile: Lee Grayson Page 5
nosed with myeloma was one of the best things
Dallas IMF Patient & Family Seminar Report Page 6
that's happened to me." Those of us who live in
Myeloma Top 10 Page 7
myeloma-land know only too well what a strange
Research Update: Amir A. Toor, M.D. Page 8
place it is horrible and wonderful at the same time.
Patient Update: MedX Lumbar Extension Treatment Page 9
The horrible part is myeloma's impact
An Olympic Light Shines on Myeloma Page 11
on both the patient and the entire family. The
News & Notes Page 12
wonderful part is focusing on what's really impor-
tant, heightening how sweet life can be, taking
time to smell the roses. And reaching out to help
THE IMF P RESENTS: "MYELOMA MATRIX"
others. I have made many wonderful friends in
myeloma-land, each special in their own way. Two
The International Myeloma Foundation is proud to introduce the Myeloma
people we lost recently had a huge impact on me.
Matrix, a reference tool for use by both patients and physicians. The chart tracks drugs of
Mary Lou Porter was a true lady a
interest to the multiple myeloma community from Phase I clinical trials through FDA
soft-spoken and gentle person who extended a
approval. The Myeloma Matrix will track drugs that are:
helping hand to myeloma patients, their families,
and the IMF. She volunteered at the Foundation's
· "Corporate sponsored" developed by a drug company, usually as part of a plan
headquarters and was an active member of the
to obtain FDA approval to market the drug to myeloma patients.
L.A.-based Circle of Friends, helping to raise
· "Investigator initiated" developed by investigator(s) in collaboration with
thousands of dollars for myeloma research.
pharmaceutical companies to further evaluate a drug which has already shown
When she knew that she was losing her battle
some evidence of promise for use in myeloma.
with myeloma, Mary Lou and her husband
· "NCI sponsored" for trials through cooperative groups such as SWOG and ECOG.
Clyde established a Charitable Remainder Trust
to ensure continued support of the needs of the
For in-depth information about drugs being tracked by the Myeloma Matrix, we
myeloma community. The IMF is privileged to
invite our members to contact the toll-free IMF Hotline at (800) 452-2873. A web-based
administer the Trust on Mary Lou's behalf.
version of the Myeloma Matrix is in development please visit www.myeloma.org and
I first saw Bubs Tamlyn at the March
check for a launch announcement. s
in Washington, DC in 1998, holding a sign that
read "Bone Marrow Cancer What About
Phase
Product Name
Company
Indication
US?" Bubs was a passionate advocate, lobbying
Recently
Zometa®
Novartis
For treatment of bone metastases
hard to increase the level of federal funding for
FDA
NESP (ARANESP)
Amgen
For persistent anemia
myeloma research. He was also committed to
Approved Thalidomid®
Celgene
Has orphan drug status, available
through Celgene's S.T.E.P.S.TM
helping others through the support group he
NOT YET APPROVED FOR MYELOMA
program
founded in Ft. Myers, Florida. Bubs and his
Phase III
DOXIL®
Ortho Biotech
Used as VDD combination in which
Doxil® substitutes for Adriamycin in
daughter Scheri were a dynamic team, attending
VAD
IMF seminars and raising money to support
GenesenseTM
Genta
Combined with Dexamethasone for
relapse
myeloma research. Sadly, we lost Bubs this past
January. In his memory, Scheri continues her
Skeletal Targeted Radiotherapy (STR)
NeoRx
To achieve better CR with stem cell
commitment to help the IMF help others.
Phase II
Beta LTTM
Lifetime Pharmaceuticals
Biologic therapy for relapse
Mary Lou and Bubs made a difference
Gallium maltolate
Titan Pharmaceuticals
Treatment for bone pain
for our myeloma family. Their memory, and
PS-341 (formerly known as LDP 341)
Millennium Pharmaceuticals Refractory and relapsed myeloma
the support and encouragement of other patients
Myeloma-derived idiotypic antigen vaccine National Cancer Institute
As immune maintenance therapy
and caregivers, inspires and reaffirms my dedi-
MylovengeTM (APC 8020)
Dendreon
As active immune therapy
cation to the IMF and the work we do.
Neovastat® AE-941
Aeterna Laboratories
Cartilage extract:
anti-angiogenic for relapse
Susie Novis
O-6-benzylguanine
National Cancer Institute
Novel chemotherapy for relapse
Pacific Pharmaceuticals
This issue of Myeloma Today
Panzem (2ME2)
EntreMed
Anti-angiogenic agent for relapse
is dedicated to the memory of
Thalidomid®
National Cancer Institute
Biologic agent: multiple studies for
Celgene
relapse & front line
Mary Lou Porter
TrisenoxTM Arsenic trioxide injection
Cell Therapeutics
Apoptosis inducer for relapse
TrisenoxTM Arsenic trioxide injection
Cell Therapeutics
Relapsed/refractory multiple
and
myeloma in combination with
vitamin C
Howard "Bubs" Tamlyn
Phase I
BrevaRex® MAb
Alta Rex
Monoclonal antibody in early testing
CC- 5013 (formerly CDC-501)
Celgene
Thalidomide analog in early testing
The IMF is dedicated to improving the
2002 CALENDAR OF EVENTS
quality of life of myeloma patients while
March 8-9, 2002
IMF Patient & Family Seminar
Atlanta, GA
working toward prevention and a cure.
March 12, 2002
Cancer Care Teleconference:
*see below
IMF Headquarters:
New Approaches to Managing Pain
12650 Riverside Drive, Suite 206
Breakthough Pain & the Discomforts of Cancer
North Hollywood, CA 91607-3421 USA
Tel: (800) 452-2873 or (818) 487-7455
March 15, 2002
March Madness Basketball Tournament
Sharon, MA
Fax: (818) 487-7454
E-mail: TheIMF@myeloma.org
March 16, 2002
Fashions 4 A Cure
Williamsville, NY
Website: www.myeloma.org
Susie Novis
March 20, 2002
Cancer Care Teleconference:
*see below
President
Understanding Anemia & Fatigue, Part III
E-mail: SNovis@myeloma.org
April 14, 2002
Second Annual Myeloma March
Niantic, CT
Suzanne Battaglia
Rocky Neck State Park
Meeting & Event Services
Contact: Christine Cardillo (860) 204-9810
E-mail: SBattaglia@myeloma.org
April 18-21, 2002
ONS Annual Meeting
Washington, D.C.
Debbie Birns
(Oncology Nursing Society)
Hotline Coordinator
E-mail: DBirns@myeloma.org
April 24, 2002
Cancer Care Teleconference:
*see below
Understanding Anemia & Fatigue, Part IV
Stephanie Colman
Community Relations and Public Affairs
April 27-28, 2002
IMF Patient & Family Seminar
Vienna, AUSTRIA
E-mail: SColman@myeloma.org
April 30 - May 1, 2002 Advocacy Day
Washington, D.C.
Spencer Howard
Meeting & Event Services
May 11-15, 2002
IMF Scientific Advisory Board Retreat
St. John, USVI
E-mail: SHoward@myeloma.org
May 18, 2002
3rd Annual JC Invitational Golf Tournament
St. Cloud, MN
Pam Jones
Development Officer
May 18-21, 2002
ASCO Annual Meeting
Orlando, FL
E-mail: PJones@myeloma.org
(American Society of Clinical Oncology)
Marya Kazakova
Publications Editor
June 3-4, 2002
OVAC Advocacy Day
Washington, D.C.
E-mail: MKazakova@myeloma.org
June 7-8, 2002
IMF Patient & Family Seminar
Washington, D.C.
Kemo Lee
Subscription and Merchandise Services
June 24, 2002
International Myeloma Golf Challenge 2002
Stamford, CT
E-mail: KLee@myeloma.org
August 10, 2002
Challenging Cases
New York, NY
Lisa Paik
Information Officer
September 13-15, 2002 IMF Patient & Family Seminar
Sydney, AUSTRALIA
E-mail: LPaik@myeloma.org
October 5, 2002
IMF Ribbon of Hope Annual Gala
Washington, D.C.
IMF (UK)
9 Gayfield Square
October 10, 2002
IMF Support Group Leaders Retreat
Durham, NC
Edinburgh EH1 3NT Scotland
Tel: (44) 0131-557-3332
November 8-9, 2002
IMF Patient & Family Seminar
Seattle, WA
Fax: (44) 0131-556-9720
E-mail: myeloma@myeloma.org.uk
December 6-10, 2002
ASH Annual Meeting
Philadelphia, PA
Executive Director IMF (UK): Eric Low
(American Society of Hematology)
Staff: Susan Hamilton, Andy Binns
For more information about IMF events, please check the IMF website at
The information presented
www.myeloma.org or contact the International Myeloma Foundation at (800) 452-CURE.
in Myeloma Today is not intended to
take the place of medical care or
*To register for a Cancer Care teleconference, please call (800) 813-4673
the advice of a physician. Your doctor
at least 2 weeks in advance or check the CancerCare website at www.cancercare.org.
should always be consulted
regarding diagnosis and treatment.
2
ASK THE EXPERTS: Infection in Multiple Myeloma
TABLE 1
LIKELIHOOD OF INFECTION AND MYELOMA STATUS
STATUS
% CHANCE OF INFECTION
MGUS
no increased risk
Active myeloma at diagnosis
5-15%
During first three months of treatment
30-40%
Dropping to a remission level of:
5-10%
Increasing progressively with recurrent disease to:
40-60%
or higher over time*
* During induction and relapse therapy, the chance and severity of infection depend upon
several factors including aggressiveness of myeloma, the type of treatment, the presence
of an indwelling catheter, and patient age.
Brian G.M. Durie, M.D.
stealth adapted CMV. The role of these viruses
· Caution is required. See Table 2.
Cedars Sinai Comprehensive Cancer Center
is currently unclear. These viruses are also
Los Angeles, California
· Being proactive is the way to avoid infections
impacted by treatment and may lead to special
By Brian G.M. Durie, M.D.
and reduce the risks of serious complications.
complications, particularly neurological,
since these viruses grow in the nerve tissue.
Infections are both common com-
· Discuss with your doctor if a small face
plications in myeloma patients as well as
mask and/or a portable air purifier are indi-
What can be done about this con-
potential trigger factors for the disease:
cated at times of high risk.
stellation of potential infections? The follow-
ing strategies are frequently recommended:
· Infections can precede the onset of active
· Although it is important to avoid sources
myeloma. The most commonly recognized
of infection in day-to-day life (children with
· Be alert and aware about the susceptibility to
infections are shingles (varicella zoster) and
infections; crowded places; eating sushi or
infection. Since the risk varies considerably
pneumonia, which prior to the last two
shellfish), most infections originate internally
from patient to patient (from very low to very
decades was typically pneumococcal in type.
because of the depressed immune system
high risk), it is very important to discuss with
The compromised immunity associated with
associated with active myeloma and treatment.
your doctor the level of risk in your case.
the evolution of myeloma predisposes to the
The goal is therefore to achieve remission
Maybe minimal or no major precautions are
infections, which in recent years have
and keep ongoing maintenance treatments
required or perhaps quite the contrary.
become more diverse. Viral infections now
as safe and simple as possible. s
include: herpes of different types, mononu-
cleosis (EBV: Epstein Barr Virus), hepatitis
TABLE 2
(A,B,C,D,E...), cytomegalovirus (CMV),
WHAT TO DO ABOUT INFECTIONS ?
human papilloma virus (HPV), and many
others. Non-viral infections include the
LOW RISK
POSSIBLE ACTIONS
whole range of bacteria, such as streptococ-
· No history of infections
· Consider flu vaccination
cus ("strep"), staphylococcus ("staph"), E.
· No active myeloma treatment
· Promptly evaluate all possible infections
Coli and the like, plus so called opportunis-
· Normal blood count values
· Carry a course of broad spectrum antibiotics
tic infections such as fungal infection ,
· No unusual risks of infection exposure
when you travel (e.g. Cipro
®, Bactrim ®*)
tuberculosis , pneumocystis, and others.
HIGH RISK
POSSIBLE ACTIONS
· The range of potential infections is truly
· One or more infections in the past
· Strongly consider preventative or prophylactic
mind boggling and ever increasing.
antibiotics to include possibly: virus (e.g.
· As soon as treatment starts , the immune
· Low white cell count
Zovirax ®), bacteria (e.g. Cipro ® or Biaxin ®),
suppression (e.g., with steroids, such as pred-
fungal (e.g. Diflucan ®), pneumocystis
nisone and dexamethasone) and reduction
(e.g. Bactrim ®*)
in white blood cell count (particularly neu-
· Ongoing treatment for myeloma,
· Consider reducing or stopping steroids
trophils) increase the risks. The first three
especially high dose therapy
such as Prednisone or Dexamethasone.
months of treatment carry the greatest risk
· Hickman catheter in place
· Use Neupogen ® to improve the white
of infection complications. The main sites of
blood cell count if it is low
infection are the respiratory system (e.g.,
· Slow recovery and/or complications
· Remove any catheter or any "foreign
pneumonia/bronchitis or sinusitis), urinary
with prior infections
object" if it is a problem.
infections (bladder or kidneys), and skin.
· Consider high dose intravenous gamma-
globulin (IVIG) as a preventative.**
· The infections that have been linked to
myeloma as trigger or causative factors include
* These antibiotics are just examples: others are available.
herpes virus 8 (HHV8 ), simian virus 40 (SV40 ),
** Only used in very high risk settings.
3
and a cytomegalovirus (CMV ) variant called
INTERNATIONAL MYELOMA FOUNDATION :
BOOK REVIEW: "Living Proof"
Founder
Brian D. Novis
By Brian G.M. Durie, M.D.
mentioned in one of the later chapters, some
President
tests such as a labeling index can predict disease
Susie Novis
"LIVING PROOF"
activity. Initial emphasis was on finding "the
Board of Directors
By Michael Gearin-Tosh
cure," which Gearin-Tosh finally discovered
Chairman Dr. Brian G.M. Durie
Simon & Schuster, Inc. U.K. Ltd.
was like locating the end of a rainbow maybe
Michael B. Bell
ISBN 07432-0677-0
close, but not yet accessible. Bravely, he set
Charles L. Briscoe
An inspiring new book written by a
recommended options aside and followed his
Mark DiCicilia
myeloma patient has just been published in
intuition to the Gerson Therapy, additional
Michael S. Katz
Britain. Michael Gearin-Tosh, a teacher of
orthomolecular oncology and enzymes, plus
Dr. Robert A. Kyle
Theatre Arts at Oxford University, was diag-
acupuncture and "mind over matter" visual-
Dr. Edith Mitchell
nosed with IgG multiple myeloma in June
ization and breathing exercises. It is extreme-
Dr. Gregory R. Mundy
Charles Newman
1994 at age 54 years.
ly important to note
"This medical mutiny... is a story which
Susie Novis
Now, almost 8 years
two additional
Richard H. Saletan
after diagnosis,
is both powerful and thought provoking." points. Firstly, he
John L. Salter
Michael is doing well overall having taken
did take Clodronate initially, followed more
E. Michael D. Scott
no chemotherapy treatment for his disease.
recently by Ibandronate (both bisphospho-
R. Michael Shaw
This medical mutiny, as he calls it, is a story
nates which can help bones and myeloma
Donald B. Springer
which is both powerful and thought-provoking.
overall). Secondly, he has taken a variety of
Donald R. Woodward
The mainstay of his treatment has been the
"anti-inflammatory" medications which can
Scientific Advisory Board
Gerson Therapy*, a nutritional approach
suppress myeloma activity. In animal model
Chairman Robert A. Kyle, USA
with some modifications and additions.
systems, anti-inflammatory medications can
Raymond Alexanian, USA
"Living Proof" is a testament to the fact that
be sufficient to suppress myeloma growth. Is
Kenneth C. Anderson, USA
"here he is," having been told, as he says in
Gearin-Tosh doing well because of these
Giuseppe Avvisati, ITALY
the book's opening, that he would be "a goner."
treatments? Maybe, maybe not. It is impossi-
Bart Barlogie, USA
With encouragement and support
ble to dissect the role of the various inter-
Régis Bataille, FRANCE
Meral Beksac, TURKEY
from friends, plus consultations around the
ventions, including the Gerson Therapy.
William Bensinger, USA
world, Gearin-Tosh analyzed the medical
Certainly his indomitable spirit and positive
James R. Berenson, USA
advice that he received. His conclusions are
commitment to recovery are key elements.
Daniel Bergsagel, CANADA
very sobering for the medical profession. Do
Of interest, Gearin-Tosh used
Leif Bergsagel, USA
we really know what we are doing? Did he
Vitamin C at very high doses and has done
Joan Bladé, SPAIN
really have active myeloma which required
well with it. This is not normally recom-
Mario Boccadoro, ITALY
transplantation and/or chemotherapy recom-
mended in myeloma patients in part because
Y.C. Chen, REPUBLIC OFCHINA
mended by top consultants? If he did not have
of kidney toxicity.
J. Anthony Child, ENGLAND
active myeloma, why the confusion? And what
What does all this say about the
Raymond L. Comenzo, USA
about other patients who may not be as insight-
medical profession? We need to do a better
Meletios A. Dimopoulos, GREECE
ful and persistent in their search for the true
job delineating and communicating areas of
Brian G.M. Durie, USA
answers to the many concerns and questions?
medical uncertainty, especially when aggres-
Dorotea Fantl, ARGENTINA
His case history summarizes early
sive therapy is involved. With low-level dis-
Ian Franklin, SCOTLAND
Gösta Gahrton, SWEDEN
stage disease, classified as Stage IA: the IgG
ease, a non-aggressive approach can be per-
Jean-Luc Harousseau, FRANCE
monoclonal protein has ranged from 3.1 Gms%
fectly acceptable. On the downside of
Vania Hungria, BRAZIL
to a high of 4.53 Gms%, most recently being
accepting milder treatment is the acknowl-
Douglas Joshua, AUSTRALIA
3.54 Gms%. These numbers are right at the
edgement of "not going for the cure."
Tadamitsu Kishimoto, JAPAN
cutoff between MGUS and myeloma. The
Gearin-Tosh highlights the conflicts
Heinz Ludwig, AUSTRIA
bone marrow tests have never shown a high
and emotions dealing with physicians, friends,
Ian MacLennan, ENGLAND
percentage of plasma cells: ranging from 5-6%
and literary insights as he selects his course to
James S. Malpas, ENGLAND
to a high of 22%. Anemia has been the per-
become "Living Proof" of his own successful
Jayesh Mehta, USA
sistent problem, supporting the diagnosis of
choices. It takes a rare personal confidence to
Håkan Mellstedt, SWEDEN
myeloma versus MGUS with hemoglobin
fully trust one's instincts. As physicians, we
Angelina Rodriguez Morales, VENEZUELA
levels in the 9-10 Gms% range. Bone x-rays
need to support such individual decisions
Gareth Morgan, ENGLAND
and bone density testing have indicated
provided they are not "medically crazy." Was
Gregory R. Mundy, USA
Amara Nouel, VENEZUELA
osteopenia (osteoporosis), but no discrete
Michael crazy to take his life in his own hands?
Martin M. Oken, USA
myeloma lesions. Serum 2 microglobulin
Perhaps some physicians thought so, but the
Linda Pilarski, CANADA
and CRP levels have been low.
proof is always in the end result. Thank you,
Raymond Powles, ENGLAND
Conclusion: the findings are consis-
Michael, for writing your story and so eloquently
David Roodman, USA
tent with a low level non-aggressive type of
discussing your life and the impact of decisions
Jesus San Miguel, SPAIN
myeloma, which can have a variable, but
and recommendations that physicians make.
Seema Singhal, USA
sometimes very long, natural history includ-
You are the "Living Proof" that we don't have
Alan Solomon, USA
ing survival of at least 8 years.
all the answers. s
Pieter Sonneveld, THE NETHERLANDS
Is this type of longer survival pre-
* For more information about the
Benjamin Van Camp, BELGIUM
dictable? Unfortunately, not in a definitive
Gerson Therapy, visit www.gerson.org or call
Brian Van Ness, USA
4
fashion for an individual patient. However, as
(888) 4-GERSON.
IMF ER PROFILE: Lee Grayson
LG: My myeloma protein levels remained
follow-up with Dr. Greipp at Mayo as well?
the same, so it's hard to say. I don't know if
LG: Yes. I was being monitored by Dr.
it helped, but it didn't seem to hurt.
Greipp, and he continued to check my IgG
levels every 3 months. My first series of
MT: What was your next step?
blood tests after I started working with Dr.
LG: I had heard about a vaccine therapy in
Gonzales showed that my IgG level dipped a
Tijuana from a woman with myeloma who
bit, so I was encouraged. Three months
felt that the vaccine helped her. I flew to
later, I went to Mayo for a check-up, and my
Tijuana, and while there I visited the Gerson
IgG level had gone way up. I also had a
Clinic. Since I was already following a similar
plasmacytoma in my chest. At that point, I
diet, and the Gerson people had no published
discontinued working with Dr. Gonzales and
or anecdotal data in their research department
began conventional treatment with dexam-
on the benefits of the Gerson program for
ethasone and Aredia. This was two and a
myeloma patients, I didn't follow up with
half years after I was diagnosed with myeloma!
Gerson. A consultant there told me that
Lee Grayson
with myeloma, it's as if you're in a research
MT: Do you think that the alternative
study with only one patient enrolled: you.
therapies had any effect on prolonging the time
Many of you may already know the
Instead, I chose to try the vaccine.
that your myeloma remained in abeyance?
warmhearted Lee Grayson, a talented musician
LG: It's hard to say. While they certainly
who performed at the IMF Ribbon of Hope
MT: What was your response to the vaccine?
didn't cure the myeloma, I felt fine and did
Making a World of Difference gala in New York
LG: The vaccine didn't cure the myeloma,
not require treatment for two and a half
in October 2000. In addition to donating his
but didn't seem to make it worse, either. I
years. And good nutrition makes sense to me.
musical talent to the IMF, Lee also gives
did get big, red, irritated patches on my
generously of his time spending hours on
thigh where the vaccine was injected. I con-
MT: So was that the end of the line for
the phone with newly diagnosed patients,
tinued to drink the organic vegetable juice
complementary medicine for you?
sharing his story and offering encourage-
with the herbal additives, such as red clover
LG: No. I had heard about Dr. Nieper's work
ment. Diagnosed with myeloma eight years
tops and echinaecea, and I continued to feel
in Germany through a myeloma patient in
ago, Lee pursued alternative therapies before
fine and my myeloma level remained stable.
Florida. Dr. Nieper's program was a combi-
and during his conventional myeloma treat-
I stopped the vaccine after 2 to 3 months in
nation of the juices I had been taking plus the
ments. He has once again been generous in
Tijuana. During that time I was also keep-
injection of a substance that is supposed to
sharing his experiences with us.
ing in touch with Dr. Greipp and seeing a
boost the effectiveness of the thymus gland,
hematologist-oncologist weekly at the
which is part of the immune system. The
Myeloma Today: Which alternative treat-
Scripps Clinic in La Jolla, California.
medication was expensive, had to be self-
ment did you try first, and why?
injected, and had to be shipped from Germany.
Lee Grayson: I was diagnosed with early
MT: What was your next step?
After a short period, I had to stop it was
stage myeloma by Dr. Phil Greipp at the
LG: I had read about Dr. Nicholas Gonzalez's
just too expensive and too difficult to import
Mayo clinic. He told me that, at the time,
treatment for pancreatic and other cancers.
the drug. In any case, my disease continued
my immune system was controlling the dis-
What he said made sense to me and I went
to progress. My doctor said my disease was
ease better than anything modern medicine
to see him in New York. I was at first reject-
"primary refractory" (non-responsive to
could offer. Dr. Greipp recommended to
ed by Dr. Gonzalez because he didn't think
chemo) and started me on thalidomide
hold off on treatment and revisit the issue in
I would be a compliant enough patient.
which helped me achieve a complete remis-
3 months. I expressed an interest in looking
Through the intervention of a friend, he
sion within months. As a result, I enjoyed a
at some alternative therapies, and he did not
later accepted me for his Protocol.
good quality of life for a period of 2 years.
discourage me. He did warn me to avoid
When I stopped responding to thalidomide
high-dose vitamin C, since it seems to
MT: What did the Gonzalez Protocol
and my condition worsened, I underwent a
encourage myeloma cells to grow. He had a
involve? How does it differ from the Gerson
stem cell transplant. Today, once again I
great approach and attitude and I appreciat-
Therapy?
feel strong and vibrant and, short of monthly
ed getting some guidelines from him. I made
LG: It is similar to the Gerson program
infusions of Zometa, do not require treatment.
contact with another myeloma patient who
juicing and coffee enemas but it includes
recommended I look into the Gerson Therapy;
high doses of pancreatic enzymes four times
MT: What would be your advice to other
a diet that was supposed to boost the immune
a day and lots of pills as well. Dr. Gonzalez
myeloma patients?
system seemed logical to me. I began by
adjusted his dietary program to suit my needs
LG: If you have the time, the resources,
consulting a biochemist who was working
as a myeloma patient. The diet he designed
and the inclination, don't be afraid to look
with an oncologist on a nutritional program
to balance my body chemistry included almost
at alternatives as long as you are also being
for cancer patients. It was similar to the
daily meat and potatoes and required that I
followed by a multiple myeloma expert. Ask
Gerson program and included lots of carrot,
eat a piece of cheesecake once a week! There
to speak with other myeloma patients who
beet, and celery juice along with herbs, and
were also many dietary supplements which
have successfully used the therapy you are
the addition of other vegetables over time.
had to be ordered through the doctor's office.
considering. Always run things by your doc-
tor before doing anything, and proceed
MT: What was your experience with the
MT: Were you continuing your regular
with caution. s
5
Gerson diet?
DALLAS DALLAS IMF P ATIENT & FAMILY SEMINAR REPORT
Dr. Philip Greipp (Mayo Clinic)
discussed standard therapy for myeloma, fol-
lowed by Dr. Jayesh Mehta (Northwestern
University Medical School and The Robert
H. Lurie Comprehensive Cancer Center),
who reviewed the latest advances with high
dose therapy and the role of transplantation.
Dr. Durie followed with a presentation on
novel therapies, focusing on the latest about
IMiDs & PS-34 as revealed at ASH.
As a break from the expert presen-
tations, a patient panel featuring IMFers Helen
Shifrin, Yelak Biru, and Michael Katz,
offered helpful tips to other patients regard-
IMFer Tom Ferguson with Chairman of the Board Dr. Brian Durie
ing the challenges of living with myeloma.
Susie Novis with IMFer Carolyn Wickwire
The first 2002 IMF Patient & Family
overview of various topics and an interactive
Seminar took place in Dallas, Texas on
exchange between the faculty panel and the
January 8-9th. Faculty speakers from around the
patient community. The IMF is committed
country shared their expertise and knowledge
to serving our members through our seminars,
on a variety of myeloma topics. Key data on
hotline, published materials, and website.
advances in the field of myeloma, presented
The broad range of services the
at the 43rd American Society of Hematology
IMF provides are made possible by the sup-
(ASH) meeting, were shared with the 200
port of our members. At the Dallas seminar,
IMF members in attendance. (ASH abstracts
the IMF was honored to recognize those spe-
are available upon request from the IMF).
cial members who have gone above and
The seminar commenced with a
popular presentation by Dr. Brian Durie
(Cedars Sinai Comprehensive Cancer Center)
IMF President Susie Novis with IMFers Lucy and Peter Tischler
Following the patient panel, the
expert presentations resumed with a talk by
Dr. Mehta on the latest clinical trial date
about the role of thalidomide in myeloma, as
well as proper dosing and combination ther-
apy of thalidomide and dexamethasone.
The final presentation by Dr.
Marvin Stone (Baylor-Charles A. Sammons
Cancer Center) focused on supportive care
initial pain assessment, common symptoms
of myeloma, and the role of bisphosphonate
IMFers Marcia and Jerry Sawyer
therapy and anti-agent 6.
beyond the call of duty on behalf of the IMF
The patients and caregivers eagerly
and the myeloma community. IMF President
IMFers Benetta and Bob Tindall with IMF Director Michael Katz
participated in the stimulating discussions
Susie Novis made presentations to several
on biology and staging of myeloma and how
that followed each presentation. The plethora
members who have joined the IMF Donor
it relates to treatment options. As always, this
of questions raised and answers received
Recognition Program. We are grateful for
presentation was a big hit with the many newly
make clear the need for such educational
their support and the contributions of time,
diagnosed myeloma patients in the audience.
programs. IMF Patient & Family Seminars
money and valued services. Together, we
Dr. Gregory Mundy (University of
are designed to allow for a comprehensive
will continue our fight against myeloma. s
Texas) lectured on bone disease, addressing
the issue of hypercalcemia associated with
increased bone resorption and, frequently,
with impairment of renal function. Dr. Mundy's
opinion is that the best approach is to effec-
tively treat the myeloma itself, and to treat
the hypercalcemia with drugs that inhibit
bone resorption combined with the careful
and judicious use of intravenous fluids. He
also spoke of the efficacy of bisphosphonates
in the treatment of hypercalcemia as well as
in the treatment of myeloma bone disease in
patients who do not have hypercalcemia.
IMFers Judy and George Goldman
IMFers Shirley and John Fish
6
with Susie Novis and Dr. Phil Greipp
MYELOMA TOP 10
HONOR ROLL UPDATE
What did the experts find most promising in myeloma research for 2001?
The International Myeloma
The IMF polled the members of its Scientific Advisory Board about what they consid-
Foundation would like to acknowledge the
ered to be the "Top 10" steps forward in the field of myeloma. Although the rankings varied
following contributors to the Foundation's
between Advisors and not all gave 10 items, the same answers came from around the globe.
programs and projects for monetary gifts
made between November 1, 2000 and
1.
PS 341 Promising activity as new treatment for myeloma.
October 31, 2001:
2.
Mini-Allo transplantation shows early benefit although complications still high.
Over $9,999
Better understanding of bone disease mechanisms accounted for the next 3 items:
Estate of Marjorie Rutherford
Estate of Harry C. Turner
3, 4, 5. MIP-1
OPG (Osteoprotegrin), and Rank.Fc identified as important mediators
$500-999
of myeloma bone disease and new targets for treatment.
Bob & Benetta Tindall
6.
Progress with IMiD trials CC5013 (thalidomide analog).
$100-249
7.
The use of genomics and proteinomics to classify myeloma and
Donald & Patricia Yost
understand growth pathways.
8.
Increased myeloma awareness Geraldine Ferraro's diagnosis is top news story.
The IMF is dedicated to improving
9.
Anti-angiogenesis as a possible treatment approach for myeloma
the quality of life of myeloma patients while
however direct anti-VEGF results disappointing thus far.
working toward prevention and a cure. The
10.
Double Auto Transplant still shows no clear benefit versus Single Auto Transplant.
support of our members makes possible the
Even role of Single Auto Transplant becoming more controversial (ASH 2001).
IMF's research, education, and advocacy
To learn more about these issues or other breaking news and features, stay tuned to
activities. Thank you. s
Myeloma Today, check out the IMF web-based weekly newsletter The Myeloma Minute, or
call the toll-free IMF Hotline at (800) 452-2873. s
WE SALUTE YOU
The IMF applauds the efforts of the
BENSON KLEIN'S TROOPERS ANSWER THE CALL
following members who have recently
started a multiple myeloma support group in
their area:
· Cherry Hill, NJ
Helen Rose (856) 414-9149
· Denver, CO
Diane Seccombe (303) 722-2289
shred2@mindspring.com
· Portland, OR*
Kathy Shaw (503) 245-9866
shawk@or.leukemia-lymphoma.org
*This is a myeloma-specific support
group started by the Oregon and
SW Washington Chapter of the LLS.
· Panama City Beach, FL
Sheila Hall (850) 236-5957
rhall41563@aol.com
For a complete list of multiple
myeloma support groups across the U.S. and
abroad, please visit www.myeloma.org and
click on the "People Helping People" tab.
If you would like help with setting
up a new multiple myeloma support group in
your area, please contact the IMF at
(800) 452-CURE. s
7
RESEARCH UPDATE: Amir A. Toor, M.D.
Dear IMF,
FUNCTIONAL ASSAY -LM-PCR
myeloma cell lines as well as in the controls,
indicating that the repair activity was medi-
Following up on these XRCC4
I am writing to give you an update
ated by NHEJ. These observations have
abnormalities, we conducted functional
on the project titled "DNA Double Strand
been confirmed in repeated experiments.
DNA double strand break repair assays to
Break Repair By Non-Homologous End
This finding is indicative of impaired capa-
confirm their significance. These DNA
Joining (NHEJ) In Multiple Myeloma,"
bility of DNA double strand break repair by
repair assays were performed using total cellu-
which had been awarded the 2001 IMF
non-homologous end joining in cells from
lar protein extracts. Briefly an LM-PCR strate-
Junior Research Grant for the year 2000 in
the multiple myeloma cell line RPMI-8226.
gy was employed to evaluate the efficiency of
memory of Sharon Newman.
Indeed this finding corroborates the earlier
ligation of a double stranded oligonucleotide
In February of 2001, I took a posi-
finding of reduced expression and possible
linker to a linearized vector. This was fol-
tion at Loyola University's Stricht School of
truncation of XRCC4 in this cell line.
lowed by PCR, using one primer complimen-
Medicine as an Assistant Professor in the
Having identified a functional
tary to the linker and one primer compli-
division of Hematology and Oncology, sec-
deficit in DNA double strand break repair by
mentary to the vector. Samples with success-
tion of Bone Marrow Transplantation. The
NHEJ in this cell line, further work is
ful ligation demonstrated a bright PCR band.
project was submitted to and approved by
planned to evaluate this in other myeloma
For this procedure, cells were col-
the Cancer Center protocol review commit-
cell lines. For this purpose, we are trying to
lected and cellular extracts were prepared by
tee and then submitted to the Loyola
obtain myeloma cell lines ARK, ARP1, HS
a modification of the protocol described by
University's Institutional Review Board,
Sultan. Further work is being conducted to:
Baumann et al (PNAS, 1998; 95(24):14066).
which gave the final approval.
Extracts were snap-frozen in liquid nitrogen
1. Identify the truncating mutation in
I have been extremely fortunate in
and stored at 80°C. Protein concentration
XRCC4. This will be done using RT-
getting excellent mentorship from Dr. Andrew
was determined and equal protein was used
PCR using primers spanning short
Vaughan, who is an expert in the field of
for each assay. Substrate vector was prepared
distances on the mRNA molecule, to
apoptosis and DNA repair by non-homolo-
by digesting pCR-Script Amp with Srf I.
isolate the truncated version (if any).
gous end joining. Dr. Vaughan has a specific
The enzyme was then inactivated and lin-
Subsequently, sequencing of the transcripts
interest in the mechanisms of translocation
earized vector purified using a QiaQuick
may be performed to identify possible
formation, concentrating on elements of the
PCR Purification kit. A double-stranded
mutations. If a truncating mutation is
apoptotic and NHEJ pathways. Under his
linker was consructed, with a linker 25 bp
identified, the readily applicable RT-
guidance, we have made some novel obser-
oligo (5'-gcggtgacccgggagatctgaattc-3') and
PCR assay will be applied to patient
vations in multiple myeloma cell lines which
linker 11 bp oligo (5'-gaattc agatc-3'). Repair
samples to detect XRCC4 abnormalities
we are eager to carry through and study in
reaction was carried out using linearized
in primary myeloma samples.
primary myeloma patient samples.
pCR-Script, double-stranded linker, ATP,
2. Assess the fidelity of DNA double strand
Hopefully, this will give us new
and protein extract. Control samples (to rule
break repair using a reporter assay utilizing
insights into the management of multiple
out repair activity by other mechanisms, e.g.
a linearized plasmid with a double strand
myeloma.
homologous recombination etc.) were pre-
break introduced in the beta-galactosidase
treated with wortmannin to inhibit DNA-
insert of this construct. Colored colonies
PROJECT 'S AIMS
PKcs, and linearized pCR-Script was added
will give a semi-quantitative estimate of
subsequent to pretreatment. Other controls
repair of the plasmid and give an evaluation
1. Study the expression of NHEJ proteins in
included DNA ligase as well as DNA PKcs
of the fidelity of the repair reaction.
MM cell lines.
incompetent and wild type cell lines
2. Evaluate NHEJ function in MM cell lines
FUTURE DIRECTIONS
(MO59K and MO59J). Circular vector as
ex vivo.
well as water controls were used as well.
3. Determine the relationship between
Once further data has been generat-
Ligation Mediated-PCR amplifica-
karyotypic instability and NHEJ activity
ed consolidating the novel findings described
tion of the ligation reaction product was per-
in myeloma cell lines.
here, further funding will be sought from
formed using repair reaction products, linker
4. Study NHEJ protein expression and
other extramural sources to expand this study
25 oligo and rep1.1 oligo (5'-ggagcccccgatt-
function in primary MM samples.
and evaluate the role of DNA double strand
tagagcttgacg-3'). The products were size-frac-
break repair in the pathogenesis of multiple
Our preliminary studies conducted
tionated on a 2.0% agarose gel and visualized
myeloma. Since this assay is readily applica-
on multiple myeloma cell lines had indicated
by ethidium bromide staining.
ble to clinical samples of purified plasma
that two cell lines, RPMI 8226 and ARK,
cells, it may give invaluable insight into the
had reduced levels of XRCC4 expression as
RESULTS
origin of complex karyotypic abnormalities
determined by Western blotting using
in malignant plasma cells.
Using this technique 3 cell lines
XRCC4 MoAb. In addition a truncated,
have been analyzed: RPMI-8226, U266, and
~34kD transcript was seen in both these cell
With sincere regards,
OPM-2. Whereas a clear band is seen when
lines. This data suggested that XRCC4
Amir A. Toor, M.D.
protein extracts from U266 and OPM-2 are
expression is abnormal in some MM cell
Assistant Professor of Medicine
used in LM-PCR, a very faint band, if any, is
lines. This may result from transcriptional
Division of Hematology/Oncology
seen in the reaction using extracts from
abnormalities in XRCC4 expression or as a
Cardinal Bernardin Cancer Center
RPMI-8226. When controls with wortmannin
result of a truncating XRCC4 mutation that
Loyola University Medical Center
were performed inhibiting DNA-PKcs kinase
may render the molecule nonfunctional.
Maywood, Illinois s
activity, DNA ligation was abrogated in all 3
8
PATIENT UPDATE: MedX Lumbar Extension Treatment
It's not like taking a Tylenol for a headache,
gain" theory of exercise. "Properly used, train-
there's going to be some discomfort."
ing equipment is controlled so that the per-
But getting someone who is already
son will not be injured or hurt," he explains.
in pain and feeling poorly besides to start
If they understand that all their motions are
exercising on a regular basis is not easy. And,
controlled so they can't be hurt, they might
I found out what
be able to over-
happens when
"When I started, I was unable to walk
come their fear of
things go well and
without a walker and was wearing a full pain." It is the fear
when they don't.
body brace. Within three months, I was of pain more than
There are no sure
the reality that is
out of the brace and off the walker."
things in dealing
often at work.
with myeloma. Benefitting from a physical
"Controlling pain and improving mobility
training routine is not easy; it takes time.
are the goal," he says.
I began my physical conditioning a
Dr. Mooney feels that the value of
year and a half ago on a twice a week schedule.
physical exercise is not taught in medical
My Exer-Med workouts included the MedX,
school a major reason most doctors don't
limited cardiovascular work, a few body
recommend it to their patients. He believes
Roy Meyer with cerified physical therapist John Schaeger
stretches, and gradually some weight-resistance
medical doctors need a better understanding of
by Roy F. Meyer
exercise. When I started, I was unable to walk
muscular-skeletal training. One of the reasons
without a walker and was wearing a full body
physical exercise does not get the attention
Those of us who are coping with
brace. Within three months, I was out of the
it deserves, he says, is that "physical training
multiple myeloma and those who help care
brace and off the walker. I was still in pain,
has never been appropriately measured." Yet,
for us know there are no sure things when it
but, thank goodness, I was mobile again.
he feels attitudes are changing, even though
comes to fighting this dreadful disease.
This twice-a-week training routine
it is happening very slowly. "The emergence
There are good days and not so good days,
continued until March of 2001, when I was
of health clubs and increased access to train-
some treatment and drugs that work and
knocked for a loop by a staph infection, two
ing equipment is helping," he says.
some that don't.
bouts of bronchitis,
Montebell is also concerned that
Often, there seems to
"Benefitting from a physical training and a severe back
medical doctors and insurance carriers do not
be more to cope with
routine is not easy; it takes time."
spasm which was
recognize the value of physical training. He
than most people will
hauntingly reminiscent of my earlier spinal
spoke to our myeloma support group in Fairfax,
ever understand. Thus, when someone
fractures. I was paralyzed for several hours
Virginia, in February 2001 and explained
comes along and suggests that we need to
before getting to the hospital for a series of
that exercise, like eating, is a vital part of
add even more stress and physical exertion
tests, including several x-rays and an updat-
everyday life. "Without structured exercise,"
to our already difficult daily routines, it is
ed MRI. For nearly two months, I was not
he noted, "muscles atrophy and we are
normally not well received. But, not always.
able to resume physical therapy. The good
unable to perform the usual tasks we could
In the August 2000 issue of Myeloma
news was that the MRI revealed a surprising
when we were younger, much less disease-
Today, I wrote about my positive experiences
result. First off, there had not been another
free." Inactivity takes it toll on us in many
with supervised physical therapy, and especially
spinal fracture, and more importantly, it rev-
ways, and it's worsened when we are strug-
with a revolutionary program called MedX
eled that there had
gling with a debili-
Lumbar Extension Machine. The MedX is
"Like medication and other aspects of my
been no additional
tating illness. "I
designed to isolate the spine so that the
bone deterioration
myeloma treatment, I have learned that
think patients who
machine can work on strengthening the back
since my initial
physical exercise, properly supervised,
get involved in
muscles and nerve endings to relieve the
MRI almost two
physical training
spine. For me, this was critical in shoring up
is simply too important to ignore."
years before. My
realize they have a
the three spinal fractures caused by myeloma.
oncologist found this to be absolutely amaz-
lot more energy and mobility. From a gener-
The program worked for me and it has worked
ing. She attributed it mainly to my monthly
al standpoint, the physical changes and the
for others, but that's not the end of the story.
Aredia infusions, which undoubtedly has
ability to function act almost as an anti-
As a result of the article I wrote on
helped, but like most medical doctors, she was
depressant."
my MedX experience, I received more than
reluctant to give any credit to physical therapy.
The benefits can be significant.
25 phone calls and e-mails asking for more
Fortunately, more and more people,
Montebell points out that physical exercise
information. I was pleased to have gotten
including several medical experts, have begun
increases the body's serotonin and triggers
such interest. It made me feel as though my
to discover the value of supervised exercise.
the release of endorphins, which reduce the
experiences might prove helpful to others.
One of the leading proponents is Dr. Vert
sensation of pain. "The psychological bene-
Thomas G. Montebell, the owner
Mooney, a world-renowned orthopedic doctor,
fits provide a real sense of empowerment
and general manager of the rehabilitation
surgeon, professor, and lecturer. Dr. Mooney
that is more important than cosmetic or
and fitness center where I do my training,
is currently the medical director at a series of
physical benefits. You feel so much better
the National Fitness Institute in Rockville,
spine clinics in California. He is a strong
and you can do things you thought you
Maryland, agrees. "Most people have not
supporter of the MedX program, and it is Dr.
wouldn't be able to do again."
had a positive experience with exercise," he
Mooney who recommended the program to
Dr. Mooney puts it this way:
says. "The hardest part for most patients is
me. He is not a believer in the "no pain, no
making it beyond the first two or three weeks.
Please see page 10
9
SOUTHERN CALIFORNIA IMF ERS START THE YEAR RIGHT!
IMF ER FEEDBACK
Dr. Vescio's presentation focused
Dear IMF,
on the various types of myeloma, risk
As a new subscriber and myelo-
factors, and drugs in clinical trials.
ma patient in Norway, please allow me
Dr. Yang discussed the research
to express my acknowledgement and joy
approach to multiple myeloma,
of receiving the IMF `Myeloma Minute'
including results of clinical trials
direct to my computer a lot of interest-
investigating PS-341, arsenic trioxide,
ing information coming even more than
and others.
once a week.
The sessions engaged all in atten-
Thank you, thank you it's a
dance from the newly diagnosed to
fantastic way of getting information and
the myeloma veterans and the ques-
following what's up as a patient.
tion and answer portion of the event
encouraged the participants to engage
Best regards and thanks,
Drs. James Berenson and Robert Vescio with event hostess Sheila Field.
in a dialogue with the myeloma
Kurt Løvschal
by Janet Johnson
experts.
The meeting was sponsored by
For the past three years, the myelo-
Novartis Pharmaceuticals and was held at
MEDX continued
ma support groups of Southern California
The Colony at Fashion Island in Newport
"When a professional athlete experiences a
have joined forces to hold the first support
Beach, California. Hosted and organized by
physical problem, he goes to the trainer and
group meeting of the year. Area support
IMFer Sheila Field, the event was also sup-
is put on the proper equipment in the train-
group members look forward to this event
ported by the Los Angeles and San Diego
ing room. Ordinary people should recognize
with great anticipation. So it was no sur-
myeloma support groups, the International
that they, too, can benefit from physical
prise that on January 12, 2002 the meeting
Myeloma Foundation, and the Leukemia &
training and rehabilitation. Proper training
attracted an over-capacity crowd of atten-
Lymphoma Society.
is much more than simply doing sit-ups at
dees. More than 125 southern California
Support group meetings such as
home or pumping iron at the gym. It must be
myeloma patients and caregivers gathered
this are beneficial in many ways, offering
supervised by someone with training and
to rejoice, share, and learn.
support and encouragement, and exposing
experience." Dr. Mooney doesn't consider
The rejoicing came in the form of
patients and caregivers to a broad range of
physical exercise to be "working out" in a tra-
enjoying good food and good company. As
useful information. I would encourage all
ditional sense, but sees it as a "safe and con-
a caregiver and member of the Los Angeles
members of the myeloma patient and care-
trolled way to counter muscular-skeletal
Area Multiple Myeloma Support Group, I
giver community to seek out and join a
problems." Controlling pain and improving
have found participating in social events to
myeloma support group. To learn about the
mobility are the goal.
be an important part of therapeutic care,
support groups in your area, please contact
During the several weeks it took for
contributing to a more positive mental atti-
the IMF. s
me to regain even limited strength, I was
tude an important underpinning in any
forced off my exercise schedule. This only
treatment situation.
Editor's Note: To date, the Los Angeles
compounded my problems. My back and leg
The sharing came through discus-
support group Circle of Friends fundraising
were sore and my stoop returned. My ortho-
sion and mutual support offered in friendly,
efforts have generated more than $300,000
pedic doctor felt that all of this was due to
informal conversation learning from each
for myeloma research through contributions
further weakening of the spine and increasing
other about personal reactions to a treat-
to the IMF from patients, their families and
kyphosis, and that it would only worsen. The
ment regimen, a dosage adjustment, a lotion
friends.
next day, I slowly resumed my physical exercise
to reduce itching, or a chair that helps ease
routine and within three weeks, much of the
back pain.
discomfort was gone and the `stoop' was less
The learning portion of the
pronounced. My orthopedic doctor told me he
day consisted of presentations by three
considered the improvement to be "significant."
myeloma specialists from the Cedars-
As a jury of one, I know ongoing
Sinai Comprehensive Cancer Center
physical therapy has helped me. I plan to
in Los Angeles Drs. James Berenson,
continue this routine as long as I am able
Robert Vescio, and Hank Yang.
because I now know what can happen when
Education, a key empowering tool in a
physical exercise is not a part of my life. Like
patient's battle with myeloma, is
medication and other aspects of my myeloma
always a highlight of our meetings and
treatment, I have learned that physical exer-
we were honored to host such an
cise, properly supervised, is simply too
excellent panel of speakers.
important to ignore.
Dr. Berenson' presentation
If you are interested in learning
included basic information as well as
more about my experience, please contact
updates on the latest results from clin-
me at (703) 938-5574 or by e-mail at
ical trials and other research projects
sailor1st@aol.com. Or check out the MedX
presented at the December 2001 ASH
Drs. Hank Yang and Robert Vescio
website at www.medxonline.com. s
conference.
10
prepare for their presentations.
AN OLYMPIC LIGHT SHINES ON MYELOMA
With the Torch a Mayo Doctor Carries Hope for a Cure
by Norma S. Holmes
is a life goal of this determined doctor, who is
Patient involvement is continuing
Washington Independent Writer
Professor of Medicine and Laboratory Medicine
nationwide. A photo website has been created
Writer Editor (ret.) U.S. Information Agency
and Pathology at Mayo. But Philip Greipp is
by Dr. Greipp's son, Dan, to enable them to
also a patient's doctor. He is `always there' for
view and share in events of the relay. Patient
When a nationwide search was
them, encouraging and helping them to lead
advocacy days in Washington are already
launched for people `who are an inspiration
productive lives, and there for physicians
forming in support of cancer legislation pend-
to others' to carry the Olympic flame to the
who care for them in their local community.
ing in Congress. HR 2629, a bill to further
Salt Lake 2002 winter games, Washington
Three U.S. Multiple Myeloma
research in blood cancers has already passed the
D.C. area patients with incurable cancer saw
foundations quickly joined the effort to
Senate and has wide Congressional support.
their chance to say "thank you!" to a remark-
nominate the internationally known hema-
So the light of hope for a cure and a
able cancer doctor who sustains them.
tologist the IMF, MMRF and Goldman
better quality of life is bright today because
"This nomination is my statement!"
Philanthropic Partnerships. "Doctor Phil"
patients with incurable cancer wanted to
asserted Cynthia Weglicki, a Maryland patient.
indeed became one of 11,500 torchbearers
make a difference, and because a committed
"I may have Multiple Myeloma, but I'm still
chosen out of 210,000 nominations across
doctor shared their dream. s
going to live! We cannot run the relays our-
the country to carry the Olympic flame. On
selves - but because of him today we can walk!
a 26-degree January night in Milwaukee,
Let Philip Greipp carry the torch for us!" Her
Wisconsin, the 59-year-old physician carried
call became a rallying cry for patients nation-
the torch in a five block uphill relay for a
wide, many severely impaired, who launched
wildly cheering crowd of family and friends.
an Internet and letter writing campaign with
Few of those who nominated him
the Salt Lake Organizing Committee.
could withstand the Northern trip into below
Dr. Philip R. Greipp, Director of
freezing temperatures to watch the event, so
Hematology Research at the Mayo Clinic in
the three foundations created banners signed
Rochester, Minnesota is a familiar and much
by patients that were carried to Milwaukee.
loved face to myeloma patients across America.
Patients, family and banners greeted him as
Modern treatment and early diagnosis have
he passed the flame and 10,000 jubilant
extended the survival of some 50,000 Americans
Milwaukeeans continued the celebration into
with myeloma. Finding a cure for the disease
the night with `Dr. Phil' and other torchbearers.
Dr. Philip Greipp with wife Maureen and
daughter Dr. Patricia Greipp, also a hematologist at Mayo Clinic
quantity:
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News & Notes
CHALLENGING CASES IN MULTIPLE MYELOMA
NCCAM CLEARINGHOUSE
HELP THE IMF H ELP YOU
The IMF has partnered with
The National Institutes of Health
The IMF has always been about
Network for Oncology Communication &
(NIH) is dedicated to exploring complemen-
people helping people, families helping fam-
Research (NOCR) to host the first ever
tary and alternative medicine (CAM) in the
ilies. Our financial support has always come
"Challenging Cases in Multiple Myeloma
context of rigorous science; training CAM
from people like you people who understand
and Other Plasma Cell Disorders" forum.
researchers; and disseminating authoritative
the importance of myeloma research and
The forum is designed to update oncologists
information. The NIH-sponsored National
educational programs. We continue to need
on how to optimally treat their most chal-
Center for Complementary and Alternative
and rely on your support. However, we now
lenging myeloma patients. This forum offers
Medicine (NCCAM) facilitates and con-
need to raise significantly more funds to
physicians a unique opportunity to partici-
ducts biomedical research but does not serve
achieve our objectives... and you can help!
pate in an interactive meeting and discuss
as a referral agency for treatments or practi-
Giving USA 2001 reported that in
the latest in the treatment and management
tioners. However, NCCAM does offer a
2000, corporations gave $10.86 billion to
of myeloma with a panel of world-renowned
wealth of information to consumers and
charitable causes. Studies indicate that
myeloma experts. "Challenging Cases in
practitioners, including a number of fact
these corporations give to organizations
Multiple Myeloma and Other Plasma Cell
sheets, consensus reports, access to CAM
that they know or with whom they have a
Disorders" will be held in New York City on
databases, and information about research
"connection." And we know that many of
August 10, 2002. For more information
and clinical trials. Further information is
our IMF members have unique relationships
please contact NOCR at (404) 845-3800.
available through the NCCAM Clearinghouse
to businesses around the world. In fact, you
online at www.ncaam.nih.gov or by calling
or someone you know most probably has a
MILLENNIUM PLANNING NEW TRIAL
(888) 644-6226.
connection that can provide the IMF with
just the right entrée to a corporation and
Millennium Pharmaceuticals Inc. is
SU5416 T RIALS DISCONTINUED
enable us to become a corporate partner.
planning to open two Phase III trials in
If you know a key individual within
April or May 2002 at 64 sites. All of the
Trials with SU5416 have demon-
a corporation, or if you have a link to some-
U.S. sites involved in the Phase I trials will
strated that the drug provided no greater
one in a corporation, please call Pam Jones of
participate, plus a number of additional sites.
benefit to myeloma patients than current
Corporate Development at (800) 452-2873
One randomized trial will accrue up to 560
control therapies. There were a total of 34
or email her at pjones@myeloma.org. With
relapsed/refractory patients who have had 1
patients in two trials. In the NCI trial, 7
your help, we will obtain the corporate part-
to 3 prior treatments. The second trial will
patients were treated with no responses of
nerships we need to dramatically enhance
be non-randomized and will accrue up to
any kind. In protocol 5016-210, 27 patients
funding for myeloma research and education
400 subjects who have failed 4 or more prior
were treated with some showing stable dis-
to a level never seen before!
treatments. A complete list of IRB-
ease, but no responses. As of this printing,
We appreciate your assistance with
approved sites is not yet available.
all trials have been discontinued.
this important initiative, and we look for-
ward to hearing from you.
International Myeloma Foundation
PRESORTED
12650 Riverside Drive, Suite 206
FIRST CLASS MAIL
North Hollywood, CA 91607-3421
U.S. POSTAGE
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Address Service Requested
I.M.F.
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Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cur
e.