Myeloma
Today SPRING 2006
Volume 6 Number 8
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
Highlights
FOCUS ON MYELOMA & PLASMA CELL DISORDERS
conference overview with morton coLeman, mD
The Focus on Myeloma & Plasma Cell Disorders conference was held in Miami,
Florida, on March 24­25, 2006. The meeting was chaired by Drs. Bart Barlogie
and Elias J. Anaissie of the Myeloma Institute for Research and Therapy in Little
Rock, Arkansas. The Scientific Committee was comprised of Drs. Brian G.M.
Durie, William S. Dalton, Angela Dispenzieri, and Nikhil Munshi. Myeloma Today
is pleased to present a brief overview of the meeting shared with us by conference
5
presenter and IMF Scientific Advisor, Dr. Morton Coleman.
Robert Vescio, MD
Myeloma Today: Dr. Coleman, what can you
tel us about your presentation on optimizing
bisphosphonate therapy, good dental hygiene, and
hydration?
Dr. Morton Coleman: In a nutshell, my presentation
indicates that we certainly accept the fact that bisphos-
phonates have made a major impact in our treatment of
multiple myeloma. AREDIA® (pamidronate disodium)
and ZOMETA® (zoledronic acid) are good and effec-
tive products, and they should be used on virtually all
patients with active myeloma who have bone problems
6
such as lytic lesions or osteoporosis. If care is given in the
Sundar Jagannath, MD
slow administration of these products, the potential side
effect of renal toxicity can be obviated. Renal function
Morton Coleman, MD
and urinalysis studies should be performed prior to com-
Center for Lymphoma
mencement of bisphosphonate therapy, and all patients
and Myeloma
should be well hydrated. In addition, if ZOMETA is
Weill Medical College
used, I suggest that it be given for 30 minutes at a mini-
of Cornell University
mum, or longer, instead of the usual 15 minutes.
New York­Presbyterian Hospital
New York, New York
Please see FOCUs On Page 3
Looking for a LocaL myeLoma support group?
8
If you are interested in joining an existing group please access the website at
www.myeloma.org "Finding Support" or call the IMF at 800-452-2873.
Brian G.M. Durie, MD
This issue of Myeloma Today is supported by:
Celgene Corporation.

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International Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Benson Klein
Dr. Edith Mitchell
Susie Novis
E. Michael D. Scott
Michael B. Bell
Dr. Robert A. Kyle
Dr. Gareth Morgan
Matthew Robinson
R. Michael Shaw (ex officio)
Mark DiCicilia
Isabelle Lousada
Dr. Gregory R. Mundy
Richard H. Saletan
Igor Sill
Michael S. Katz
Charles Newman
Allan Weinstein
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors Emeriti
Daniel Bergsagel, CANADA
Ian Franklin, SCOTLAND
Ian MacLennan, ENGLAND
Y.C. Chen, REPUBLIC OF CHINA
Tadamitsu Kishimoto, JAPAN
James S. Malpas, ENGLAND
Scientific Advisors
Raymond Alexanian, USA
Dorotea Fantl, ARGENTINA
Martin M. Oken, USA
Kenneth C. Anderson, USA
Rafael Fonseca, USA
Antonio Palumbo, ITALY
Michel Attal, FRANCE
Gösta Gahrton, SWEDEN
Linda Pilarski, CANADA
Hervé Avet-Loiseau, FRANCE
Morie A. Gertz, USA
Raymond Powles, ENGLAND
Dalsu Baris, USA
John Gibson, AUSTRALIA
S. Vincent Rajkumar, USA
Bart Barlogie, USA
Hartmut Goldschmidt, GERMANY
Paul Richardson, USA
Régis Bataille, FRANCE
Jean-Luc Harousseau, FRANCE
Angelina Rodríguez Morales, VENEZUELA
Meral Beksac, TURKEY
Vania Hungria, BRAZIL
David Roodman, USA
William Bensinger, USA
Sundar Jagannath, USA
Jesús San Miguel, SPAIN
James R. Berenson, USA
Douglas Joshua, AUSTRALIA
Kazuyuki Shimizu, JAPAN
Leif Bergsagel, USA
Michio M. Kawano, JAPAN
David Siegel, USA
Joan Bladé, SPAIN
Henk M. Lokhorst, THE NETHERLANDS
Seema Singhal, USA
Mario Boccadoro, ITALY
Heinz Ludwig, AUSTRIA
Bhawna Sirohi, ENGLAND
J. Anthony Child, ENGLAND
Jayesh Mehta, USA
Alan Solomon, USA
Raymond L. Comenzo, USA
Håkan Mellstedt, SWEDEN
Pieter Sonneveld, THE NETHERLANDS
John Crowley, USA
Giampaolo Merlini, ITALY
A. Keith Stewart, CANADA
Franco Dammacco, ITALY
Gareth Morgan, ENGLAND
Guido J. Tricot, USA
Faith Davies, ENGLAND
Gregory R. Mundy, USA
Benjamin Van Camp, BELGIUM
Meletios A. Dimopoulos, GREECE
Amara Nouel, VENEZUELA
Brian Van Ness, USA
Brian G.M. Durie, USA
Jan Westin, SWEDEN
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Placeh
Scientific ol
& der
Clinical
FOCUS -- continued
MT: What other potential side effects are
transplantation? Will these responses translate into sur-
associated with bisphosphonate therapy?
vival advantage? If we can answer these questions, we can
Dr. Coleman: All the data that has been generated on
make a major impact on treating myeloma.
bisphosphonates was generated on a 2-year time frame.
MT: What is being done now to answer these
The major problem we have encountered, osteonecrosis
questions?
of the jaw (ONJ), is relatively rare and occurs mostly
Dr. Coleman: There are studies underway. It is already
after two years of bisphosphonate therapy. In my mind,
clear that the incorporation of these new products with
ONJ is clearly related to the use of bisphosphonates. So
old products, such as alkylating agents and steroids, is
the bisphosphonates can be given quite safely for the first
clearly superior to the old products alone. For many years,
two years, but we should develop a sense of caution when
Alkeran (melphalan) and prednisone (MP) has been the
using bisphosphonates beyond that time frame. The inci-
mainstay for therapy in patients not eligible for a stem cell
dence of ONJ seems to go up with the duration of thera-
transplant. Adding thalidomide to MP has been shown
py, as well as with the potency of the bisphosphonate used
to improve the response rate. For example, in a European
­ ONJ rates are higher with Zometa than with Aredia.
study of myeloma patients ineligible for transplants, 436
MT: Are there any measures that can be taken to
elderly newly diagnosed myeloma patients received half
prevent ONJ?
the dose of melphalan, plus prednisone and thalidomide
Dr. Coleman: Yes, there are. All invasive dental work
(MPT). MPT was superior to MP alone, producing a
should be done on the patient PRIOR to the commence-
longer progression-free survival and overall response rate.
ment of bisphosphonate therapy. And, after two years of
Studies of MP+VELCADE and MP+Revlimid are also
therapy, one should be very careful with any procedures
promising. We still don't know if the novel agents can
that involve exposing the bone.
produce the same durability of high-degree responses.
MT: What are your thoughts about the use of
MT: What other highlights of the Focus on
Bondronat (ibandronate) in myeloma?
Myeloma & Plasma Cell Disorders conference can
you share with our readers?
Dr. Coleman: In his presentation on important adjuncts
in myeloma therapy, Dr. James Berenson made mention
Dr. Coleman: The myeloma targets and promising agents
of this interesting new bisphosphonate. Studies have been
presentation by John D. Shaughnessy Jr., PhD, and
performed in Europe, and one such study was recently
Joshua Epstein, DSc, was very interesting. From using
published abroad. But it is a little early in its development
micro-array analysis, Dr. Shaughnessy is able to tease out
scheme to say exactly what future place this bisphospho-
certain genes that seem to play a role in promulgation of
nate might have in myeloma therapy.
myeloma. Genes are nothing more than packets of DNA.
MT: The expert discussion moderated by
Dr. Shaughnessy looks for the gene pattern that may play
Dr. Barlogie ­ with a panel that included Drs.
a role in multiple myeloma. The next step is to find or
Mohamad Hussein, Jean-Luc Harousseau, David
develop various medicines that interfere with that specific
S. Siegel, and Donna M. Weber ­ focused on new
gene product (e.g., proteins, enzymes).
drugs for myeloma. How good are they, really?
For the patient and caregiver members of the myeloma
Dr. Coleman: One of the central issues is the role of
community, the most important point to be made about
the new drugs that have been developed. Some of these
the Focus on Myeloma & Plasma Cell Disorders confer-
drugs are already on the market and others' presence on
ence is that the development of novel biologic agents,
the market is imminent. The three major novel drugs are
which are more targeted than the old alkylating agents,
Thalomid® (thalidomide), Revlimid® (lenalidomide),
can have a significant impact on how we treat this disease.
and VELCADE® (bortezomib). We are now using them
These new agents are here to stay. In combination with old
in various combinations with chemotherapy and ste-
agents, they can produce responses that we only dreamed
roids, and some combinations are showing outstanding
of before. Not too many years ago we rarely even talked
responses equivalent to what we see with transplantation.
of complete remission (CR) because it was so rare. Today,
The major questions are: How do novel agents fit into the
novel therapies are producing exciting responses. The next
algorithm for treating patients? Are these good responses
step is to determine if these responses are as durable as the
as durable as the same sort of responses we achieve from
responses we are seeing from transplantation. mt
800-45-CURE(87)

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Table of Contents
Scientific & Clinical
Conference Overview with Morton Coleman, MD
1

Update on the Role of Lenalidomide (Revlimid®) in Myeloma
5

The Role of Bortezomib in Previously Untreated Myeloma
6

The Efficacy of Thalidomide in the Treatment of Myeloma
8

Gene Targeting and Cell Therapy for Refractory Myeloma
9

Current Imaging of Myeloma
10
Education & Awareness
Two Myeloma Meetings Held in Germany
12

San Francisco IMF Patient & Family Seminar
13

Ft. Lauderdale IMF Patient & Family Seminar
14
Special Event
Robert A. Kyle Lifetime Achievement Award 2006
16
International
IMF Latin America
17
Supportive Care
Nutrition & Multiple Myeloma
18

IMF Hotline Coordinators Answer Your Questions
20
Support Groups
The Atlanta Area Multiple Myeloma Support Group
21

Preview of IMF Support Group Leaders Retreat
22
Patient & Caregiver Experience
Living Successfully with Multiple Myeloma
23
Member Events
Family & Friends Celebrate the Life of Mario Federis
26

IMF Honors Member Event Through Research Grant
27

Music Against Myeloma
28

2006 Member Events Calendar
28

Our Guiding Light Shines Bright
29

Member Events Updates
29
Scientific Advisor Profile
A. Keith Stewart, MB, CHB, MBA
30
Board Member Profile
Igor Sill
31
Letters to the IMF
Fighting with everything you've got, and more
32
News & Notes
Important news bits and late-breaking information
34
Order Form
Request a subscription or place an order for information
35
Dear Reader
Letter from Susie Novis, President
36
IMF Calendar 2006
May 16
KyleAwardDinner­
Sept 2
P&FSeminar­CZECHREPUBLIC


NationalPressClub,Washington,DC

23
P&FSeminar­Pamplona,SPAIN

1921 SupportGroupLeadersRetreat­Scot sdale,AZ
Oct 48 SWOG­Seattle,WA
June 26 ASCO­Atlanta,GA

21

IMF16thAnniversaryCelebration­

1518 EHA­Amsterdam
RegentBeverlyWilshireHotel,LosAngeles,CA

2325 ECOG­Washington,DC

2228 MyelomaAwarenessWeek
July 78 PortlandP&FSeminar
Nov 4
SecondAnnualSouthwestSymposium­Tempe,AZ
Aug 45 PhiladelphiaP&FSeminar
Dec 812 ASH­Orlando,FL

Other events/meetings will be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or call 800-452-CURE (2873).
IMF­Latin America, IMF­Japan and IMF­UK events are not included above.
4
www.myeloma.org

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Scientific & Clinical
upDate on the roLe of LenaLiDomiDe (revLimiD®) in myeLoma
Myeloma Today Interviews Robert Vescio, MD
Myeloma Today: What is lenalidomide?
off. And, although I have not seen this
Robert Vescio, MD: Lenalidomide was
in my own practice, there is a reported
developed to be a more potent, at least in the
incidence of thrombotic complications,
laboratory setting, version of thalidomide.
namely blood clots in the legs. This is
MT: How does thalidomide work in
why aspirin or blood thinners are often
myeloma?
given to patients on lenalidomide.
MT: What is the data on remission
Dr. Vescio: Thalidomide is known to have
rates with lenalidomide?
activity in multiple myeloma. It has various
properties including inhibiting both the pro-
Dr. Vescio: There have been a few studies
duction of and response to certain cytokines
comparing lenalidomide and dexametha-
like tumor necrosis factor (TNF), preventing
sone to dexamethasone alone. These stud-
blood vessel formation, and stimulating the
ies have shown an overall response rate
Robert Vescio, MD
immune system.
Cedars-Sinai Medical Center of approximately 60%, with one quarter
Los Angeles, California
MT: How does lenalidomide differ
of the patients achieving a near complete
from thalidomide?
remission (nCR).
MT: Please define complete remission (CR) rates.
Dr. Vescio: Lenalidomide does seem to inhibit TNF as
much as 50,000 times as potently as thalidomide. It also
Dr. Vescio: The most stringent criteria were developed
seems to be a better stimulator of the immune system. It
by Dr. Joan Bladé. In order for someone to be considered
was also hoped that it would have less of some of the side
to have a complete remission (CR), the bone marrow
effects of thalidomide, namely sleepiness and neuropa-
cannot show more than 5% plasma cells, and there can
thy. At present, lenalidomide does not seem to have any
be no detectable monoclonal protein in the blood or the
long-term toxicity, while thalidomide does accumulate
urine by both electrophoresis and immuno-electropho-
in the system.
resis. The latter is the key because it is most sensitive to
MT: In what set ing has lenalidomide been studied? detecting monoclonal protein. In nCR, the immuno-
fixation test can still be positive for myeloma but there
Dr. Vescio: While lenalidomide is being studied in clini-
can be no signs of myeloma on the more routine tests. In
cal trials as part of initial treatment of myeloma, it has
both conditions, there can be no visible tumors.
been studied most prominently in patients with relapsed
MT: What complete remission rates are associated
disease. It is the drug's success in the relapse setting that
with the use of lenalidomide?
is being submitted to the FDA for approval.
Dr. Vescio:
MT: Are there subsets of myeloma patients for
In relapsed patients, the true CR rates were
whom lenalidomide might not be a good idea?
13% in the North American study and 15% in the
European and Australian study. The drug has been used
Dr. Vescio: Lenalidomide does suppress the bone mar-
in the frontline setting for newly diagnosed patients
row and lower the white blood cell count ­ a feature
and the CR rate in that study is 6% so far. But many
that thalidomide doesn't really have ­ so patients that
of the patients in that study received only 4 months of
have marginal bone marrow function may have a dif-
therapy followed by a stem cell transplant, so it is very
ficult time tolerating this drug. However, some patients
possible that if they had more months of therapy, the
have low blood counts due to the myeloma itself and, if
CR rate would have been higher. In the studies I've just
lenalidomide can kill the myeloma cells, then this drug
mentioned, lenalidomide was used in combination with
can still be a valid option because eventually the blood
dexamethasone.
counts will get better as the myeloma cells are killed
Please see UPDaTe On lenalIDOMID On Page 7
800-45-CURE(87)
5

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Scientific & Clinical
the roLe of BortezomiB in previousLy untreateD myeLoma
Myeloma Today Interviews Sundar Jagannath, MD
Myeloma Today: What is bortezomib
MT: What can you tell us about
(VELCADE®) and how does it work in
your clinical trial experience with
myeloma?
bortezomib in the frontline setting?
Sundar Jagannath, MD: Bortezomib is a
Dr. Jagannath: Even before bortezomib
novel agent. It is a new drug with a new
was officially approved by the FDA, we
mechanism of action. The bortezomib mol-
had proposed a multi-center clinical trial
ecule is a boron-containing dipeptide that
to pilot bortezomib in newly diagnosed
works as a proteasome inhibitor. A prote-
myeloma patients. It was a unique study
some is an enzyme in the cell ­ an important
design because we wanted to use bortezo-
housekeeping enzyme in both the cytoplasm
mib alone for the first two 3-week cycles.
and the nucleus ­ that is responsible for
If the patient did not respond promptly,
destroying unwanted proteins. Proteins are
then we added dexamethasone to the
very important to cellular function, and to
bortezomib. We were able to treat 48
being alive, so this enzyme plays a critical role
Sundar Jagannath, MD
patients and presented the study results
by breaking down 80% of unwanted proteins St. Vincent's Comprehensive at the last meeting of Americal Society
in the cell. Bortezomib is the first drug devel-
Cancer Center
of Hematology (ASH). At the end of the
New York, New York
oped to inhibit this particular enzyme. This
first two cycles, all measurable cancer dis-
action is reversible ­ bortezomib inhibits the
appeared in 10% of the patients. Half of
enzyme partially for a short period of time, then the
the patients responded with either a complete remission
enzyme completely recovers. Bortezomib preferentially
(CR) or partial remission (PR) to the use of bortezomib
causes myeloma cells to die as compared to normal cells
alone. When the dexamethasone was added, 80% of
because the normal cells recover, but the myeloma cells
patients responded by the completion of treatment at six
do not. Myeloma cells are plasma cells and their function
cycles. One out of five patients went into CR or near CR
is to make antibodies (proteins). Plasma cells produce a
(nCR), so this combination was shown to be very effec-
lot of protein, so once you block the protein, myeloma
tive. Patients who wanted to go on to having a stem cell
cells become vulnerable and die. The other reason why
transplant were able to do so.
the myeloma cell is so sensitive to bortezomib is because
MT: How do these results compare with other
it blocks NFkB, a transcription factor responsible for
investigators' studies?
the production of inflammatory cytokines (IL-6, IL-1,
TNFa, and VEGF), thereby starving the myeloma cells.
Dr. Jagannath: Our study was reproduced by Dr. Jean-
Bortezomib also works in the bone marrow microenvi-
Luc Harousseau in a multi-institutional trial of 48
ronment. In addition, bortezomib down-regulates cell
patients in France. Instead of six cycles, they did four
adhesion molecules (sticky substances expressed on the
cycles, and they had 70% of patients respond by the
cell surface) which allow myeloma cells to attach to bone
completion of treatment with either CR or nCR. So two
marrow stromal cells. The bone marrow stromal cells
investigators, in two separate multi-institutional trials,
nourish myeloma cells and protect them from chemo-
one in the U.S. and one in France, were able to repro-
therapeutic agents so that they become resistant to such
duce each other's data. In addition, in Dr. Harousseau's
treatment. If you prevent the myeloma cells from attach-
experience, when patients went on to receive a trans-
ing to bone marrow cells, they become even more vul-
plant, about 90% of the patients responded. The results
nerable to chemotherapy agents. That is why there is a
they saw with bortezomib and dexamethasone followed
synergy to using bortezomib in combination with other
by one transplant were equivalent to what we've seen
chemotherapy agents. So there are many different ways
after two transplants when using VAD as induction.
that bortezomib targets myeloma cells and kills them.
Please see THe ROle OF BORTeZOMIB On Page 7

www.myeloma.org

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Scientific & Clinical
UPDATE ON LENALIDOMIDE -- continued
MT: What is the role of dexamethasone when
likelihood of benefit and to obtain additional safety data.
combined with lenalidomide?
The combination looks very promising, and it is impor-
Dr. Vescio: There appears to be some synergy, and the two
tant for patients who need this drug to be able to access it.
drugs seem to work better together. It has been known for
This study has very few enrollment restrictions and we are
years that thalidomide and steroids are synergistic.
expecting a total enrollment of 12,000 patients.
MT: Which lenalidomide clinical trials have you
MT: What do you see as the future of
been involved with?
lenalidomide as therapy for myeloma?
Dr. Vescio: The first trial looked at lenalidomide as a
Dr. Vescio: Lenalidomide very likely will become part
single agent in patients with relapsed myeloma, and I am
of the initial therapy for myeloma but, for the near
still following some patients from that trial who have been
future, it will be used most frequently for relapsed dis-
doing well for years. The current trial I am involved with
ease. There are also studies looking at lenalidomide as
is still recruiting patients. It is the Phase IV Expanded
maintenance treatment following stem cell transplanta-
Access Program (EAP) ­ a multi-center, single-arm,
tion. Lenalidomide is an active drug in myeloma and,
open-label trial for lenalidomide plus dexamethasone in
perhaps in combination with other active agents, it has
previously treated subjects with myeloma. The goals are
the promise of becoming a very powerful tool in treating
to provide lenalidomide to relapsed patients with a high
this disease. mt
THE ROLE OF BORTEzOMIB -- continued
Another group of investigators in England did a slightly
myeloma patients in a multi-institutional trial, with an
different study, using PAD (VELCADE, Adriamycin,
overall response rate of 40%.
and dexamethasone) as induction. They found that at the
end of four cycles almost 90% of the patients responded,
These are milestones! In the 1980s, we never thought
and they had an excellent CR rate. Even before trans-
that CR could be achieved in myeloma. Now we have
plantation, one third of the patients were in CR or nCR.
been able to achieve CR with the help of bortezomib,
At the end of transplantation, 57% of patients were in
which is being used more and more by major centers,
CR or nCR. All patients' blood counts recovered. All
and other novel agents as well.
patients could get their stem cells collected. All patients
MT: How does bortezomib compare with other
recovered promptly. In this study as well, the results with
novel agents?
PAD followed by one transplant were equivalent to what
Dr. Jagannath: Although thalidomide and lenalidomide
we've seen after two transplants with VAD.
are also helping us achieve high response rates, bort-
In Arkansas, Dr. Bart Barlogie and colleagues are using
ezomib is unique because it can be given to patients
multi-agent chemotherapy in combination with bort-
irrespective of their kidney functions ­ even patients
ezomib, and they show very good responses. They take
with renal impairment can get this drug. In addition, we
patients to two (tandem) transplantations and at the end
already know from the results of the clinical trials with
they can show that about 80% of patients have achieved
relapsed disease that bortezomib works in patients with
CR. At MD Anderson, they are using bortezomib, tha-
chromosome 13 deletion and t(4;14) translocation. This
lidomide, and dexamethasone ­ so they are putting two
is a drug that works in people who would have previous-
novel agents together! ­ and their results are very excit-
ly been considered to have poor prognosis. Bortezomib
ing. Of 38 patients, 18% have achieved CR and 74%
alone or in combination with other drugs is an effective
have achieved PR for a total response rate of 92%.
therapy in previously untreated patients with myeloma.
We are looking at a brand new future. mt
At Dana-Farber Cancer Institute investigators have
used bortezomib as a single agent for newly diagnosed
800-45-CURE(87)
7

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Scientific & Clinical
the efficacy of thaLiDomiDe in the treatment of myeLoma
By Brian G.M. Durie, MD
Thalidomide has been used since
the overall patient survival. Other stud-
1997 in the treatment of myeloma.
ies are required to better address the role
Remarkable efficacy has been
of thalidomide in this type of complex
observed both alone and in combination
transplant setting and several ongoing
with dexamethasone and other drugs.
trials are soon to be reported.
But only recently have comparative trials
been completed to show the clear added
Separately, a much simpler study from
benefit of thalidomide, and the drug still
the Torino group in Italy shows a clear
awaits formal FDA approval for myeloma
benefit for thalidomide (Palumbo, et al
treatment.
Lancet 367: 825-31, March 11th, 2006).
This study evaluates the value of the addi-
Two recent studies have led to some con-
tion of thalidomide 100 mg daily to the
fusion about thalidomide efficacy. In the
standard melphalan/prednisone (M/P)
first study from the Little Rock team in
regimen used for older patients aged
Arkansas (Barlogie, et al NEJM 354(10);
Brian G.M. Durie, MD
60-85 years. 129 patients received the
1021-30, March 9th, 2006) thalidomide
Chairman of the Board,
additional thalidomide and 126 patients
International Myeloma Foundation
was given throughout the treatment course
received M/P alone. The complete plus
to half the patients undertaking the Total
partial response rate with MPT was 76%
Therapy 2 double transplant protocol. The patients
versus 47.6% for MP alone without added thalidomide.
receiving thalidomide throughout the disease course had
In this case, although there were some increased tox-
higher initial complete response rates (62% versus 43%)
icities, as one might expect (neuropathy, DVTs, infection
and a higher percentage of patients in remission at 5
risk), especially early in treatment, the initial benefit was
years (56% versus 44%), but the ultimate overall survival
sustained. In this case, there was an overall trend to both
was the same as in patients not receiving thalidomide
longer remissions (p=0.0006) as well as longer survival.
initially. What does this mean?
Again, the interpretation of survival was complicated by
use of thalidomide in MP patients at relapse (21%) as
The problems in interpreting this result are several.
well as the higher up-front risks with the new MPT com-
Firstly, 83% of the patients not receiving thalidomide
bination. Recommendations are now made for antico-
initially did receive it as soon as they relapsed. The pri-
agulant therapy, preventative antibiotics, and lower doses
mary comparison is therefore between early use of tha-
of thalidomide to reduce toxicities and risks. Overall,
lidomide versus later use of thalidomide. One interpre-
there is remarkable benefit with thalidomide in this trial,
tation is that both are good, in that the overall survival
which has led to several other larger randomized trials
in both patient groups is over 5 years even for patients
that have confirmed the advantages of adding (with due
> 65 years old. Secondly it is truly difficult to sort out
cautions) thalidomide to the standard melphalan/predni-
the impact of thalidomide in the setting of such a com-
sone regimen.
plex multi-drug and multi-procedure protocol. But the
use of thalidomide did not appear to be detrimental to
Thus, as they say, the devil is in the details! One has to
the overall outcome, although important side effects
look closely to assess the results of new trials. The bot-
such as neuropathy and DVTs (deep vein thrombosis or
tom line for now is that thalidomide continues to show
clotting episodes) are a concern with early continuous
remarkable benefit. As with every drug, careful advice
use of thalidomide in a multi-drug protocol. This study
is required about the details of thalidomide use, includ-
therefore provides mostly an important caution about
ing the dosage, preventative medications such as blood
study design when a critical endpoint to be evaluated is
thinners and antibiotics, as well as the most appropriate
Please see eFFICaCY OF THalIDOMIDe On Page 11
8
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Scientific & Clinical
gene targeting anD ceLL therapy for refractory myeLoma
Dr. Eishi Ashihara Presents Research Project Abstract
The IMF is proud to announce that
protein. These effects were observed in
Dr. Eishi Ashihara is the recipient of the
l-pam-sensitive cell lines as well as in
2006 Aki Award. This annual myeloma
l-pam-resistant cell lines. It is suggested
research grant was instituted in 2002
that ZOL may be useful as a molecular
by IMF Japan in memory of its founder,
targeting agent in myeloma cells.
Aki Horinouchi. The 2006 award was
presented to Dr. Ashihara at the IMF
In addition to their direct antitumor
Scientific Advisors Meeting held in
activities, third-generation BPs expand
Atlanta, Georgia.
T cells, which exhibit major his-
A
tocompatibility complex-unrestricted
gents of molecular targeting
lytic activity. After peripheral blood
therapy inhibit the proliferation
mononuclear cells were stimulated
of malignant-transformed cells by
with ZOL and interleukin-2 for 14
blocking the signals for cell proliferation.
days, T cells were expanded by
Several targeting agents developed to
up to about 800-fold. These expand-
counteract multiple myeloma (MM) have
ed T cells were V9V2 subsets,
yielded promising results; however, it is
having cytotoxic activity. We pre-
still difficult to achieve a definitive cure for
viously observed that pretreatment
myeloma. Bisphosphnates (BPs), developed
with ZOL enhanced the cytotoxic-
primarily to treat bone diseases, may also
ity of T cells on non-small cell
act as anticancer drugs by inhibiting the
Eishi Ashihara, MD, PhD
lung cancer cells. Internalization of
a c ti va t i on
Kyoto University
ZOL by cancer cells rapidly led to
Aki Award
Kyoto, Japan
of
Ras
the inhibition of farnesyl pyrophos-
Recipients
and Ras-related proteins
phate (FFP) synthase, resulting in intracellular accu-
through suppression of
mulation of isopentenylpyrophosphate that is situated
2002
both geranylgeranylation
upstream of FFP synthase in the mevalonate pathway.
Dr. Masahiro Abe
and farnesylation. We
We investigated the in vitro cytotoxicities of T cells
Tokushima University
previously demonstrated
on MM cells alone or in combination with
that YM529, a third-
2003
generation BP, inhibits the
Dr. Takashi Sonoki
proliferation of MM cells.
Kumamoto University
This time, we examined
2004
the effects of zoledronate
Dr. Hideaki Ishikawa
(ZOL), another third-
Yamaguchi University
generation BP, on MM
cells. ZOL inhibited the
2005
proliferation of MM
Dr. Yutaka Hattori
cells in a time- and dose-
Keio University
dependent manner similar
to that of YM529 and
2006
induced apoptosis by
Dr. Eishi Ashihara
inhibiting the prenylation
Kyoto University
of Rap1-A, a Ras-related
Please see gene TaRgeTIng On Page 11
800-45-CURE(87)

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Scientific & Clinical
current imaging of myeLoma
By Michael E. Mulligan, MD
There are many different imaging
The latest International Staging System
studies available to investigate
for myeloma is based solely on the lab-
suspected disease processes, and
oratory findings of B2 micro-globulin
radiologists are specially trained to perform
levels and albumin levels. This does not
and interpret these imaging studies. This
diminish the importance of imaging
article will briefly touch on the imaging
studies to assess the skeletal changes.
tools that help in the diagnosis, staging,
Staging of myeloma was based for many
and follow-up of patients with myeloma.
years on a number of different tests
organized by Drs. Durie and Salmon
The current imaging tools available
into the Durie/Salmon staging system,
include:
published in the medical literature in
· standard x-rays (radiographs)
1975. The only imaging study in the
· CT (computed tomography)
original staging system was regular x-
rays. In 2003, a new Durie/Salmon
· MRI (magnetic resonance imaging)
PLUS staging system was published.
Michael E. Mulligan, MD
· "bone scanning" (a nuclear medicine
The "plus" of this new staging system
Associate Professor of Radiology,
study with intravenous injection of a
was the addition of imaging findings
University of Maryland
radioactive material)
Medical System (UMMS)
from MR and PET (or PET/CT) to the
Chief, Division of Radiology, Kernan
· PET (positron emission tomography)
findings from regular x-rays. Stage 1 by
Hospital
another nuclear medicine technique
imaging means that there are no more
Assistant Chief of
Musculoskeletal Imaging, UMMS
than 4 focal skeletal lesions or there is
PET scans are often combined with MSK Fellowship Program Director, only mild disease seen in the spine by
CT scans, and this study is known as
UMMS
MR exam. Stage 2 by imaging means
Baltimore, MD
PET/CT. PET and PET/CT have been
that there are between 5 and 20 focal
widely available over the last five years,
lesions or there is moderate disease in
but not all insurance companies cover myeloma patients
the spine by MR exam. Stage 3 by imaging means that
who have these studies done. Hopefully, this will change
there are more than 20 focal lesions in the skeleton or
soon as more data is published in the medical literature
there is severe disease in the spine by MR exam.
substantiating the benefits of PET/CT.
All of the imaging studies mentioned above can be used
Once a doctor suspects the diagnosis of myeloma based
to follow the course of the disease during and after treat-
on a patient's symptoms and laboratory results, he or she
ment. However, regular x-rays and CT only show lesions
will usually request imaging studies of the skeleton to
(holes) in the bones. Unless a hole is bigger or there are
help confirm the diagnosis. The radiographic "bone sur-
new holes on the follow-up study, it is impossible to
vey" may include x-rays of the skull, spine, ribs, pelvis,
know if there are still active tumor cells in the lesion. MR
arms, legs, and/or other specific areas of the skeleton.
imaging and PET use properties of active tumor cells to
Newer ways of surveying the entire skeleton include
determine if there is still active disease at those sites. In
whole-body CT or whole-body MRI. An MR imaging
addition, the whole body can be surveyed with just one
study of the spine may be requested by your doctor even
study. Thus these are becoming the favored techniques
if the regular x-rays are normal because it is known that
for following myeloma patients.
MR imaging can show abnormality inside the bones of
the spine much earlier than regular x-rays, and this could
The imaging findings by themselves should never be
considered as the sole determinant of disease activity.
result in a change of the imaging stage.
Please see CURRenT IMagIng On Page 11
10
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Scientific & Clinical
EFFICACY OF THALIDOMIDE -- continued
timing and setting to use the drug. The clear benefit of
myeloma patients need to seek as much information as
thalidomide plus dexamethasone as frontline therapy in
possible about the appropriate use of drugs in their own
patients proceeding to stem cell harvesting and trans-
personal situation. mt
plantation is, for example, well established. As always,
GENE TARGETING -- continued
ZOL-pretreatment. Expanded T cells revealed strong
CD138 (syndecan-1) is highly expressed on MM cells,
anti-myeloma effects either with or without ZOL-pre-
but not on normal hematopoietic cells. As gene-silenc-
treatment (Figure). It is suggested that cell therapy using
ing targets, we selected Polo-like kinase-1 (PLK-1) and
T cells could be a powerful strategy for blocking MM. -catenin. PLK-1 is one of the most important regula-
We are now investigating the in vivo effects of T cells
tors of mitotic progression in mammalian cells, and we
using a xenograft myeloma mouse model and searching
reported that the expression of PLK-1 in urinary blad-
for new antigens on myeloma cells for presentation to
der cancer cells correlates with the disease prognosis.
T cells.
-catenin, a cytoplasmic protein of the Wnt pathway,
associates with the TCF/lymphocyte-enhancer factor
RNA interference is a newly discovered mechanism for
(TCF/LEF) family. -catenin-TCF/LEF complexes
silencing genes in a sequence-specific manner at the
migrate to the nucleus and activate the transcription
mRNA level through the introduction of small cognate
of c-myc and cyclin D1, resulting in cell proliferation.
double-stranded interfering RNA (siRNA) into cells, and
Preliminary data show that PLK-1 and -catenin are
has recently been introduced into cancer therapy, pri-
overexpressed in myeloma cell lines. We suggest that
marily in vitro. However, the therapeutic use of siRNA is
CD138 mAb combined with PLK-1 siRNA or -catenin
largely dependent on the development of a drug delivery
siRNA may have potential as a powerful tool for molecu-
system that efficiently delivers siRNA into target cells. To
lar targeting therapy. A novel therapy based on a com-
deliver siRNA into MM cells, we are creating a CD138
bination of gene-targeting therapy and cell therapy for
monoclonal antibody (mAb) combined siRNA system.
MM is now under investigation in our laboratory. mt
CURRENT IMAGING --
IMF Research Grant funded by Donate for Drew Day
continued
"Novel Therapeutic Antibodies
The interpretation of the imag-
for Multiple Myeloma"
ing findings can be difficult,
and the tests are not 100%
Dr. Giovanni Tonon
accurate. The treating doctor
Dana Farber Cancer Institute
will always take into account
Boston, Massachusetts
all of the information available
Dr. Tonon and colleagues have implemented an integrated oncogenomic approach
from other laboratory tests and
to identify the spectrum of genetic alterations in a large panel of myeloma cell
the patient's current feelings and
lines and tumors. The ultimate goal of this research is to provide the scientific
their symptoms. The radiologists
and clinical community with a list of thoroughly validated antibody targets, ready
who interpret and report these
to be enlisted into therapeutic antibody development and ultimately translated
tests are usually happy to answer
into drugs capable of having as impact upon patient survival.
patients' general questions about
them. Specific questions about
In the Winter 2005/2006 issue, we had an article about Donate for Drew Day, a very suc-
imaging results should be direct-
cessful event held in September 2005 that raised over $50,000. The donation of the proceeds
ed to the treating physician. mt
from this event funded a research grant in December, 2005, to Dr. Giovanni Tonon. We are
sincerely grateful to Patrice and Drew Spaeth for including the IMF in their celebration.
800-45-CURE(87)
11

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Education & Awareness
two myeLoma meetings heLD in germany
Patient Day and Expert Symposium in Heidelberg
More that 300 myeloma
patients attended the
third biannual Myeloma
Patient Day in Heidelberg,
Germany. The event took place on
October 22, 2005, at the German
Cancer Research Center (Deutsche
Krebsforschungszentrum). The
meeting was co-sponsored by the
Medical Clinic of the University
of Heidelberg and the IMF. In
conjunction with the Patient Day,
an Expert Symposium was held
for more than 90 physicians on
October 21, 2005.
Dr. Hartmut Goldschmidt, mem-
ber of the IMF Scientific Advisory
Board, chair of the German-speak-
Rolf Pelzing, board member of the Nordrhein-Westphalen (Germany)
ing Multicenter Myeloma Group
Support Group, translates for Dr. Brian Durie
(GMMG), one of two major
clinical trial cooperative groups in
25 support group leaders from Germany, Austria,
Germany, and professor at the University of Heidelberg,
Switzerland, Belgium, and the Netherlands. The purpose
organized both events and led sessions on both days.
of this meeting was to discuss how IMF programs could
better serve the European myeloma patient and medical
Dr. Brian Durie, Chairman
communities. Interestingly, the leaders expressed many
and cofounder of the IMF,
of the same concerns that support group leaders in the
delivered presentations
U.S. experience ­ how to maintain consistent group
in both sessions. IMF
leadership, how to attract new members, and how to
Scientific Advisors Dr.
better share information.
Pieter Sonneveld of Erasmus
Medical College University
Two pledges by the IMF were made as a result of the
Hospital in Rotterdam,
meeting. First, the IMF will create a German language
the Netherlands, and
email newsletter, the Myelom Merkur, which will trans-
Dr. Heinz Ludwig of
late articles from Myeloma Today and the Myeloma
the
Wilhelminenspital
Minute that are relevant to German-speaking audi-
in Vienna, Austria, were
ences. Additionally, the IMF named Director of Public
among the faculty. Other
Advocacy, Gregor Brozeit, to head a new European
myeloma and bone disease
operations program for continental Europe. He has
specialists from throughout
already met with a number of patient and medical
Germany also participated.
leaders in Europe to develop new projects to serve the
Gerlinde Fuhrmann,
European myeloma community and myeloma patients
leader of the Jena
(Germany) Support Group
In addition, the IMF
throughout the world. mt
organized a meeting with
1
www.myeloma.org

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Education & Awareness
san francisco imf patient & famiLy seminar
By Paul Hoffman
The IMF hosted a Patient
opportunity to talk with the
& Family Seminar in
experts and to exchange experi-
San
Francisco
on
ences with other myeloma sur-
February 10-11, 2006. The
vivors. But this one was sort of
meeting was attended by about
special, in that an atmosphere
250 patients and caregivers. It
of great friendship permeated
commenced on Friday with an
among the attendees, as we
open forum conducted by Drs.
exchanged information about
Brian Durie and Jeffrey Wolf,
chemo, transplants, adverse
followed by presentations on
reactions,
up-and-down
nutrition (Bernadette Festa,
counts, etc.
MS, RD) and Freelite testing
(David Smith, The Binding
I attended my first two IMF
Site), then an orientation for
seminars with my wife, Elaine,
new IMF members, and cocktail
who died of multiple myeloma
Paul & Elaine Hoffman
reception and welcome dinner.
in December, after a 7-year
battle with the disease. Even
On Saturday, the general session of the seminar began
with Elaine now gone, I wanted to maintain my associa-
at 8am, with a welcome from Susie Novis, President of
tion with the IMF, and to continue to be of help, because
the IMF. Then, an interactive introduction session was
I think it's such a good organization. Several years ago, I
followed by Dr. Durie's presentation "Myeloma 101 ­
was contacted by IMF's Greg Brozeit as a result of some-
what to do when you're first diagnosed." Dr. Wolf
thing I had written about the need for the NIH to get
addressed "Current options for primary induction &
more involved with myeloma research. I am a psycholo-
achieving the maximum response pre-transplant." Dr.
gist and a statistician and, in 1977, I had organized the
Bill Bensinger presented on "The role of high-dose
Oregon Research Institute. Because of my prior interac-
therapy and transplant in 2006." Dr. Durie returned to
tion with the NIH, I knew how they dealt with research
the podium with a presentation on "Achieving best bone
issues and proposals, and I was able to help Greg frame
health and quality of life." To close out the morning
questions for the NCI so that they actually had to admit
sessions, the IMF Patient Panel shared personal insights
that there wasn't one single research grant at the time
about dealing with myeloma, and Greg Brozeit gave us
that was specifically concerned with myeloma. That's
an update on cancer advocacy.
how I became involved with the IMF.
After lunch, Dr. Morton Coleman spoke about
When Elaine was diagnosed with myeloma, she changed
"Advancing treatment results with thalidomide and its
from an outgoing person to someone very introverted.
derivatives," and Dr. Keith Stewart provided an overview
She no longer wanted to interact with people, so when I
of the key data presented at the American Society of
first suggested that we attend an IMF seminar, she didn't
Hematology conference in December of 2005. The fac-
want to go. But I was able to persuade her, and the expe-
ulty left a fair amount of time for our questions, as a Q &
rience was so a refreshing that it took some of the burden
A session with the panel followed each presentation. The
of fear off her. It made us want to make the most out of
"Break-Out Sessions" commenced after the afternoon
the years we had to live.
coffee break and involved all the faculty and Susie Novis,
who held her "Caregivers Need Care Too" session.
We met other people who were dealing with myeloma
with a positive attitude, and this was very reassuring psy-
The weekend was extraordinary! This was the third
chologically. Encountering other members of the myelo-
IMF Patient & Family Seminar that I've attended, and
ma community took us from a condition of isolation and
they've all been a fountainhead of knowledge, plus an
denial to being able to express and share our experience.
Please see san FRanCIsCO P&F seMInaR On Page 15
800-45-CURE(87)
1

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Education & Awareness
ft. LauDerDaLe imf patient & famiLy seminar
By Bob Feltzin
It was another beautiful
Bank On A Cure® research
day in South Florida. No
initiative. He also introduced
golf today... the IMF
an interactive session where
is in town. As a five-year
patients and caregivers were
veteran of IMF seminars,
able to participate in several
I'm happy to see many old
video question sessions as the
friends who've gathered
day progressed. It is both an
to attend the meeting.
interesting way to get audience
On March 31, during the
participation and a fun thing
Q & A session with Drs.
to do. The results of these
Brian Durie and Morton
question sessions demon-
Coleman, eight South
strated that myeloma patients
Florida support groups were
everywhere face very similar
Cindy & Bob Feltzin with Nancy Baxter
represented, with members
challenges and outcomes.
asking a million questions. This has to be the best way
to kick off a seminar!
Dr. Morie Gertz's presentation "Myeloma 101" was so
clear that even a child could easily come to understand
It's always interesting to see how first-time attendees react
the basics of multiple myeloma. It was very well done.
to meeting so many other myeloma patients and family
Those in the audience who had experienced difficulties
members ­ they are so relieved to find they are not alone.
understanding this disease gained a much clearer view of
And the amount of information that is presented shows
the disease.
just how much is being done to secure their future.
For the rest of the morning, we learned about treat-
David Smith's presentation focused on the Freelite test,
ment options, response to treatments, transplants, bone
and it sounded like a very useful tool. Susie conducted
health, and quality of life. Each presentation was fol-
her Caregiver Session ­ where does she get all that
lowed by a Q &A session with a panel of experts: Drs.
energy? ­ which is always popular with family members.
Durie, Gertz, Vesole, Shippman, and Niesvizky. By the
It was great to learn that we can call the IMF Hotline
way, did you know that bisphosphonates were originally
even to discuss "sex, drugs, and money" ­ those were
used the 1950s to de-sludge pipes?!
Susie's words!
The Patient and Caregiver Panel members spoke about
On the morning of April 1, over 150 patients and care-
their experiences, outlooks, and emotions. Some of the
givers filled the Ballroom at the Ft. Lauderdale Wyndham
discussion centered on whether or not we should be
Hotel. Mike Katz presented on the progress of IMF's
transplanted (the panel chose to wait).
IMF Board member Michael Katz presented the
Francesca Thompson Outstanding Service Award to
Cindy Feltzin (my wife, the dynamo who started and
runs the Palm Beach, Martin, and St. Lucie Counties
Multiple Myeloma Support Group) for her service to the
myeloma community.
The evening festivities included a dinner where people had
a chance to mingle with friends, new and old. Susie greeted
everyone and showed a video on myeloma hosted by James
Brown. After dinner, I spent a half hour talking to new
friends from Naples, Florida and Virginia. All of us were
Ft. Lauderdale seminar faculty members Drs. Vesole and Niesvizky
Please see FT. laUDeRDale P&F seMInaR On Page 15
14
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---

Education & Awareness
SAN FRANCISCO P&F SEMINAR -- continued
We also realized that there are a lot of very smart research-
& Family Seminars is a few yards beyond those of us
ers and clinicians who are doing the best they can to find
with humble educational backgrounds, I think most
the answers that will eventually lead to a cure.
of the attendees come away with a better grasp of what
multiple myeloma is, where they are, and what opportu-
While some of the science presented at the IMF Patient
nities for treatment are available to them. mt
FT. LAUDERDALE P&F SEMINAR --
continued
long-term (5 to 10 years) myeloma survi-
vors. The new developments in research
have us very excited about our futures.
The next day, at lunch, I had a chance
to make more new friends. While this
IMF Honors Cindy Feltzin with the
seminar took place in South Florida,
Francesca Thompson Outstanding Service Award ­
I met people from Arizona, West
Ft. Lauderdale, Florida
Virginia, Virginia, New York, New
The IMF was proud to present the Francesca Thompson Outstanding Service award
Jersey, Massachusetts, Georgia, Lousiana,
to Cindy Feltzin. This prestigious award was established in 1997 and was named
California, Ohio, Wisconsin, and
in honor and in memory of Dr. Francesca Thompson. Dr. Thompson was a world-
other states.
renowned orthopedic surgeon who practiced in New York City. She was also a
In the afternoon, Dr. Niesvizky spoke
myeloma patient and author of the book Going For the Cure. Dr. Thompson was a
about thalidomide and derivative treat-
founding member of the IMF Board of Directors, and one of her first projects was
ments. Since most of us have used
to personally fund the IMF's hotline. The award was established posthumously in
thalidomide, we were all very inter-
her memory to honor her spirit, her unflagging selflessness, and her devotion to
ested. Breakout sessions followed with
reach out and help others.
each doctor taking a smaller group
Since 1997 the IMF has awarded The Francesca Thompson Outstanding Service
to have give-and-take on specific sub-
Award to eight very deserving individuals, and it was with great pleasure that once
jects. I chose to attend sessions with
again the IMF was able to recognize another very deserving individual by present-
Drs. Shipman and Durie.
ing it to Cindy Feltzin.
Susie closed the session by thanking
Cindy and her husband Bob, who is a myeloma patient, live in Palm Beach Gardens,
everyone for coming and reminding
Florida, where Cindy started her second myeloma support group. Her first was
us to contact our Congressmen to urge
when she took the reins of a group in Miami that had been leaderless for some
them to vote to restore the seven billion
time and was in need of help. Two years later she and Bob moved to Palm Beach
dollars for medical research cut from the
Gardens, and it was there that Cindy established the Palm Beach, Martin and St.
Federal budget. With all these budget
Lucie Counties MM Support Group.
cuts, that leaves us only praying for a
Today the group has approximately 140 members who meet once a month, and
cure. And although there is nothing
each month Cindy makes sure that they have an informative speaker, great food,
wrong with praying, a few bucks for
and a good time. Cindy formed a wonderful friendship with Rick Sulak from
research can't hurt.
Millennium Pharmaceuticals, and Rick has been a big help to Cindy, providing
lunch for the group and offering his assistance in a variety of helpful ways.
If I got anything out of the meeting, it
was that if a myeloma patient or family
Cindy is a tireless worker with a real "can do" attitude, and in addition to devoting
member wants to be educated about
endless hours to ensure that the needs of her group are met, she also cares for her
myeloma, these IMF seminars are must-
husband, her parents, and her extended family.
attend events. Thanks to the IMF staff
The IMF congratulates Cindy on being a recipient of the Francesca Thompson
for a terrific weekend and for the care
Outstanding Service Award. She is a most deserving recipient ­ and in the spirit of
and passion they bring with them. mt
Francesca, she continues to go "above and beyond the call of duty to help others"!
800-45-CURE(87)
15

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Special Event
Be part of the ceLeBration
Fourth Annual International Myeloma Foundation
The IMF is pleased to announce that
ROBERT A. KYLE
Dr. Brian G.M. Durie
LIFETIME ACHIEVEMENT AWARD
has been selected to receive
May 16, 2006
the Fourth Annual Robert A. Kyle
National Press Club
Lifetime Achievement Award.
Washington, D.C.
EVENING SPEAKERS
Dr. Julian Adams
Chief Scientific Officer,
Infinity Pharmaceuticals
Dr. Dalsu Baris
National Cancer Institute (NCI)
IMF Scientific Advisory Board
Dr. Bart Barlogie
Professor of Medicine & Pathology,
University of Arkansas for Medical Sciences
Dr. Robert Kyle and Dr. Brian G.M. Durie
Director, Myeloma Institute of Research and Therapy
IMF Scientific Advisory Board
The Robert A. Kyle Lifetime Achievement Award honors a phy-
sician who most exemplifies a singular dedication to and com-
Ms. Stephanie Gallagher
passion for myeloma patients and treatment of their disease. By
President, World City America, Inc.
extension, it also honors everyone in the myeloma community
Mr. Michael Katz ­ Master of Ceremonies
who supports physicians, researchers, and their patients, which
Senior Vice President, Booz-Allen & Hamilton, Inc.
is why the IMF invites every one of its members to attend this
IMF Board of Directors
special event.
Mr. Benson Klein
Set at the famous National Press Club, the evening will begin
Principal, Ward & Klein
with a 6PM cocktail hour followed by a 7PM dinner and pro-
IMF Board of Directors
gram, during which many accomplished, noted members of the
Dr. Robert A. Kyle
myeloma community will speak to the advances being made. The
Professor of Medicine and Laboratory Medicine,
occasion will provide a unique opportunity to visit with physi-
Mayo Medical School
cians and researchers, as well as with patients and their families.
IMF Board of Directors
Chairman, IMF Scientific Advisory Board
Dr. Kyle, for whom the award is named (and its first recipient),
can think of no better person to receive this year's honor than
Dr. Gregory Mundy
Dr. Durie. "He's the best and brightest," Dr. Kyle says, "and
Professor of Cellular & Structural Biology
Assistant Dean for Clinical Research
thoroughly dedicated."
University of Texas Health Science Center
Benson Klein, IMF Board Member, who is chairing the dinner
at San Antonio
with his wife Carol, thoroughly agrees. "Dr. Durie is a wonderful,
IMF Board of Directors
dedicated human being," he says. "And he is reassuring, forth-
IMF Scientific Advisory Board
coming, and knowledgeable," Carol adds.
Mr. Richard Saletan
Founder, Weston Group
To purchase tickets or become a sponsor, please contact Suzanne
IMF Board of Directors
Battaglia at 800-452-CURE (2873) or visit our web site,
www.myeloma.org.
Dr. Howard Urnovitz
Chief Executive Officer, Chronix Biomedical, Inc.
We look forward to seeing you on May 16th. mt
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International
imf Latin america
By Christine J. T. Battistini
IMF Latin America (IMFLA) has been working very
hard on reaching out to all of the Latin American
myeloma patient population. When we first opened
our office in Brazil, we literally had to start from scratch.
Currently, we send out 800 InfoPacks every month
within Brazil alone, and our Portuguese-language website
gets approximately 200,000 to 300,000 hits per month!
Our accomplishments in Brazil became our calling card
for the other Latin American countries. But it was dif-
ficult for IMFLA to reach all of the Latin American
myeloma community without a website. I am pleased to
report that on April 20, 2006, we launched a Spanish-
President of IMFLA Christine J. T. Battistini (center) with
language website to serve the residents of the Spanish-
Rita de Cassia Nascimento and Abilio Gunutzman
speaking countries that we cover. This was a huge under-
taking and a great accomplishment for us.
There are approximately 1,200 myeloma patients cur-
rently undergoing active cancer treatment in Portugal,
with an average of 300 newly diagnosed cases each year.
There are cancer centers specializing in myeloma in
Lisbon, Porto, and Coimbra. The 2007 IMF Patient &
Family Seminar in Portugal will take place in Lisbon.
Attendees at launch of Portugal's website, www.myelomapt.org
In 2006, IMF Latin America is proud to present five
Patient & Family Seminars:
· Santos, Brazil ­ May 6, 2006
· Rio de Janeiro, Brazil ­ June 24, 2006
IMFLA celebrates launch of Portugal's website
· São Paulo, Brazil ­ July 31, 2006
A staff of three including my assistant, Rita de Cassia
· Caracas, Venezuela ­ September 30, 2006
Nascimento, and Administrative & Financial Director,
· Mexico City, México ­ October 7, 2006
Abilio Gunutzman, runs the IMFLA office. Together
Prior to each meeting, we visit local hospitals, interact
with Dr. Brian Durie, we were able to gather all of the
with patients and physicians, distribute educational
Scientific Advisors of IMF Latin America for a meet-
materials, and then proceed with the Patient & Family
ing that took place during ASH in December of 2005.
Seminar activities. By the time we leave, the local
We plan to reconvene annually during the ASH
myeloma community knows that we are really there for
conference. mt
them ­ we are not just a website and an InfoPack.
NOTE: To contact IMF Latin America or to view information
in Spanish, please visit www.myelomaLA.org. To access the
Next year, in co-operation with the IMF, IMFLA is
Portuguese-language website, please go to www.myeloma.org.br.
planning the first Patient & Family Seminar in Portugal,
To visit the Portugal website, please go to www.myelomapt.org.
which will be part of IMF's European meetings calendar.
800-45-CURE(87)
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Supportive Care
nutrition & muLtipLe myeLoma
By Bernadette Festa, MS, RD
Good eating habits are important to all of us. To Sugar intake
a cancer patient, however, good nutrition is a
Sugar intake has a significant
powerful tool that can decrease undesirable side
effect on white blood cell
effects of both the disease and its treatment, maintain
(WBC) count. One hour after
healthy body weight, enhance energy level and quality
ingesting 100 grams of sugar,
of life, and increase potential for favorable response.
your body will experience a
Here are some simple guidelines to improving your
37.5% decrease in neutrophil
nutrition status:
phagocytic activity. This activity
Fluid intake
ingests foreign or dead cells and Bernadette Festa, MS, RD
helps the body get rid of foreign
Nutrition Coordinator
It is essential to have an adequate fluid intake. Fluids help
invaders that we don't want to Alta Bates Comprehensive
your body detox from the drugs in your body. There is
Cancer Center
be there. Two hours after ingest-
a simple formula to determine if you are getting enough
Berkeley, California
ing 100 grams of sugar, your
fluids. Divide your body weight by 2 to arrive at the num-
body will experience a 43.7% decrease in neutrophil
ber of fluid ounces you should consume on a daily basis.
phagocytic activity. Five long hours after ingesting that
For example, if you weigh 128 pounds, you should drink
sugar, your body will still register an 18.7% decrease in
64 ounces of
neutrophil phagocytic activity. Neutrophils are the most
fluids per day
abundant type of WBCs. They are the body's primary
(128÷2=64).
defense against infection, physiologic stress, and foreign
But
fluid
invaders. If the number of neutrophils in your body
intake does not
is low, it may be unable to successfully defend itself.
simply mean
Phagocytosis is involved in controlling inflammation
water intake.
and immune tolerance, and plays a part in the body's
For optimal
defense capacity. It is important to remember that while
health,
you
products such as honey and maple syrup may have some
want to con-
trace nutrients that refined sugar does not have, they
sume a balance
have the same effect on your body.
of
different
fluids. Please
Steroid use
see Figure 1
Steroids raise blood glucose levels and body weight,
for suggested
while eventually causing loss of energy. If steroids are a
p r o p o r t i o n s
part of your treatment regimen, it is important for you
of your fluid
Figure 1.
Suggested proportions of fluid intake
to manage your sugar intake.
intake.
Blood sugar management
Constipation management
One teaspoon contains 4 grams of sugar. The sugar rec-
Be sure to drink plenty of liquids to meet your personal
ommendation from the World Health Organization for
fluid goal. Keep a jar of the Anti-Constipation Fruit
the average person is 12 teaspoons (48 grams) daily per
Paste on hand in your freezer (see recipe). This fruit paste
2,000 calorie diet. This may appear easy to do but in our
can be consumed by the spoonful, spread on bread, or
culture, it is not. Once you factor in the sugar contained
you can find your own way of incorporating it into your
in the foods you eat, you may be eating even more than
diet. Supplemental magnesium may also be helpful but
the recommended amount. Read food labels! You will
get approval from your treating physician before taking
be shocked to learn how much sugar is contained in
any supplements.
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Supportive Care
many prepared foods. If you must have
something sweet, have it with a well-
12 MOST pesticide-contaminated fruits & vegetables
balanced meal.
n Apples
n Peppers
n Celery
n Cherries
Sugar and Insulin
n Imported grapes n Nectarines
n Peaches
n Pears
n Potatoes
n Red raspberries n Spinach
n Strawberries
If you consume sugar, you need a lot of
insulin. Reduced insulin sensitivity is
12 LEAST pesticide-contaminated fruits & vegetables
associated with reduced glucose toler-
n Asparagus
n Avocados
n Bananas
n Broccoli
ance, obesity, and hypertension. Sugar
n Cauliflower
n Corn
n Onions
n Papayas
ingestion leads to insulin release. The
n Pineapples
n Sweet peas
n Mangoes
n Kiwi
more sugar eaten, the higher the levels
Based on Dept. of Agriculture & FDA data from 100,000 lab tests 1992-2001
of insulin in the body. Insulin growth
factors are associated with many types
of cancer.
healthy immune system is tied in with having a healthy
Essential Fatty Acids
intestinal environment. The intestine is where we absorb
a lot of our nutrients and get rid of the wastes in our
The average American diet has a high ratio of 25:1
bodies. Probiotics can be obtained from foods such as
of Omega-6 vs. Omega-3 fatty acids. This leads to an
plain yogurt or from supplements.
increased tendency toward inflammation, more rigid cell
membranes, impaired cell function, and hormone and
These basic guidelines for good nutrition while coping
insulin dysregulation. On a molecular and biochemical
with cancer give you the ability to improve your quality
level, there is solid evidence to suggest that it worsens the
of life NOW. If you wish to work with a nutritionist on
body's ability to fight cancer. In 1999, a NIH Workshop
designing a tailor-made dietary program just for you,
on "the essentiality of and recommended dietary intakes for
please make sure that the person you are working with
Omega-6 and Omega-3 fatty acids" recommended that 4
has the expertise necessary to help guide you. Your best
to 6 grams of Omega-6 and 2 to 3 grams of Omega-3
bet is to contact a local cancer center and get a referral
be ingested daily. Omega-3 fatty acids are present in
to a staff nutritionist specializing in working with cancer
cold-water fish, flaxseed, and nuts such as walnuts and
patients; she/he will have the distinction of being an
almonds. Omega-6 fatty acids are present in safflower,
RD (Registered Dietitian). mt
sunflower, cottonseed, and corn oils.
Anti-Constipation Fruit Paste
Trans Fatty Acids
n 3­4 oz. Senna tea leaves
Hydrogenated fats are potentially cancer causing and
n 1 lb. pitted prunes
should be eliminated from your diet as much as possible.
n 1 lb. raisins
These fats are prevalent in prepared foods, especially
n 1 lb. figs
store-bought baked goods, crackers, and other starchy
foods. Be sure to read food labels and control your Trans
n 1/2 cup brown sugar
Fatty Acid intake.
n 1 cup lemon juice
Probiotics
Steep Senna tea leaves in 2-1/2 cups boiled water.
Strain tea into a soup pan. Add fruit to tea, and boil
Probiotics are a group of food products containing live
for 10 minutes. Add sugar and lemon juice. Remove
microorganisms that can aid in the maintenance of
from heat and set aside until completely cool. Transfer
health and the prevention of disease. Probiotics promote
to a food processor, and process until a smooth paste
good bacteria, which may play an important role in
is formed. Store paste in a glass jar in the freezer. Use
helping the body protect itself from infection, especially
1­2 tablespoons daily, as needed.
along the mucosal surfaces. Some believe that having a
800-45-CURE(87)
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Supportive Care
imf hotLine coorDinators answer your Questions
The IMF Hotline 800-452-CURE (2873) is staffed by Debbie Birns, Paul Hewitt, and Nancy Baxter.
The phone lines are open Monday through Friday, 8am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
Question:
enormous challenges and is
I suffer from peripheral
currently inadequate." It is
neuropathy as a result of
imperative that you consult
my treatments for myeloma.
your oncologist before taking
Can you suggest some ways
supplements of any kind.
to cope with this debilitating
· On almost everyone's list
problem? Is it permanent
of remedies for peripheral
or reversible?
neuropathy are the B vita-
Answer:
mins. Many doctors recom-
mend up to 100 mg per day
Peripheral neuropathy mani-
of vitamin B6. Higher doses
fests itself as numbness, weak-
of B6 can further damage the
ness, tingling, cramping, or
nerves. You can also take a
burning pain in the extremi-
Hotline staff: Debbie Birns, Paul Hewitt, and Nancy Baxter
vitamin B complex incorpo-
ties (usually the hands and
rating 100 mg of vitamin B6.
feet). Deposition of monoclonal protein on nerve tissue
Other doctors recommend 400 IU daily of Vitamin E.
with resultant neuropathy can occur with myeloma or
MGUS (a non-cancerous condition called monoclonal
· For leg cramping: tonic water (which has quinine in
gammopathy of undetermined significance). Peripheral
it) ­ one glass in the evening and any other time that
neuropathy can also result from myeloma treatment with
cramping occurs. Also helpful for leg cramping are
vincristine and/or thalidomide. Renal failure and amy-
potassium (2 teaspoons of apple cider vinegar or banan-
loid deposition, potential complications of myeloma, can
as and oranges) and magnesium (250 mg twice a day).
further exacerbate the neuropathy problem. Patients who
Be careful with magnesium in larger doses as it can cause
have shingles also complain of neuropathic pain that is
diarrhea.
severe and debilitating (post-herpetic neuralgia or PHN).
· Amino acids Acetyl L-Carnitine and Alpha lipoic acid
Although the shingles can be treated with Acyclovir, the
have been on the Dana-Farber Cancer Institute's (DFCI)
neuropathy can persist after treatment.
neuropathy regimen since the early days of Velcade clin-
Although there is no cure for peripheral neuropathy, doc-
ical trials. These can be obtained at health food stores
tors have offered neuropathy patients a list of vitamins and
or some supermarkets. Recommended doses are: Acetyl
medications that help them cope with the problem and
L-Carnitine 500mg twice a day with food (up to 2000
lessen the symptoms. Some patients' symptoms improve
mg a day can be taken) and Alpha lipoic acid 200mg to
when they have removed the source of the problem. For
1000mg a day with food. There is also a combination
example, patients whose neuropathy is caused by mono-
pill of Alpha lipoic acid-200mg and Acetyl-L-Carnitine-
clonal protein deposition may improve when treatment
500mg which can be taken twice a day.
for myeloma reduces the amount of monoclonal protein.
· Oral tricyclic antidepressants, such as Elavail (ami-
Other patients improve when they discontinue therapy
triptyline), have been widely reported to relieve pain-
with the drug that has caused the problem, usually vin-
ful peripheral neuropathy. These versatile drugs have
cristine, thalidomide, or VELCADE®. Unfortunately,
numerous uses other than the treatment of depression.
some patients recover only partially or not at all. Keep
Since these medicines may themselves cause side effects,
in mind that what works for one patient may not work
careful monitoring by a doctor is important. Wellbutrin,
for another. Keep in mind, as well, that as the authors
an antidepressant with fewer side effects than the tricy-
of a New England Journal of Medicine article (March
clics, has recently been shown to have promise in reliev-
27, 2003) entitled "Painful Sensory Neuropathy" con-
ing the pain of peripheral neuropathy.
clude, "Treatment of painful sensory neuropathy presents
Please see IMF HOTlIne On Page 22
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Support Groups
the atLanta area muLtipLe myeLoma support group
By Cathy Lebkuecher
After attending several IMF Patient &
this led to declaring our non-profit status
Family Seminars and hearing Susie
with the Internal Revenue Service. I had
Novis ask the participants if there
not been aware that this had to be done
was a support group in their area, I began
within 18 months, or it could never be
to feel a bit guilty. I was diagnosed with
done! With the aid of an accountant
myeloma in 1993 and had a bone marrow
friend, AAMMSG received our 501(c)(3)
transplant in 1994, but here I was in 1997
status ­ but this is not something I would
­ not receiving any treatment and feeling
recommend to other support groups.
pretty darned good ­ and it seemed like I
In 1998, support group member Charles
had no excuse not to get involved.
Briscoe began meeting with officials from
This thought process lasted several months
Emory Clinic and the new Winship
and focused on where we could meet if
Cancer Center. Charles felt strongly that
I started a myeloma support group. My
myeloma patients should not have to
hometown of Sugar Hill was too far from
travel many miles to receive quality care.
the mainstream; we needed a place closer
Cathy Lebkuecher at an IMF
Through a family foundation, Charles
to Atlanta. In May of 1997, as I was com- Support Group Leaders' Retreat pledged $250,000 to Emory if this pledge
ing home from an ACS Relay for Life, I
was matched by other myeloma patients
saw a small church. The location was ideal. I called the
and their families. AAMMSG members were spurred on
church and spoke to the pastor. He was delighted to give
by the possibility of excellent treatment in Atlanta and
us a room at no charge as part of an outreach ministry
began a mail campaign to family and friends. The dedi-
of the church.
cation and determination of Charles Briscoe in pursuing
The next step was publicity. It was decided that the first
this goal has resulted in Emory Winship Cancer Center
meeting would be in August. Saturday morning was
being "on the map" as a quality treatment center for
selected to avoid Atlanta traffic and allow those who
multiple myeloma.
were working to attend. A flyer was designed and printed
Since its inception, the AMMSG has been focused on
and, with the help of two other myeloma patients, it was
education and the sharing of information. We keep a
distributed to local oncologists and clinics. Also, I mailed
supply of IMF educational materials on hand, publicize
flyers along with a note explaining who I was through
any new information as it becomes available, and seek
my oncologist's office to their other myeloma patients.
out speakers whose presentations might benefit our
The Atlanta Area Multiple Myeloma Support Group
membership. In addition to co-hosting three Patient
(AAMMSG) had ten people at our first meeting (we
& Family Seminars with the IMF, we have hosted dif-
were expecting maybe five or six). Everyone was very
ferent guest speakers at special meetings. Among these
enthusiastic about the opportunity to speak and learn
have been Susie Novis (IMF President), Dr. Brian G.M.
from other patients. Each month, we had new attendees
Durie (IMF Board Chairman & Scientific Advisor), Dr.
as word spread. We quickly outgrew our initial meeting
Bart Barlogie (Head of the U. of Arkansas Myeloma
room and were able to secure the use of a larger class-
Institute for Research & Therapy), Dr. James Berenson
room, finally ending up in the very large fellowship hall
(President, Institute for Myeloma & Bone Cancer
(still no charge). At one of our very early meetings, the
Research), and Dr. Jonathan Simons (Head of the
local Novartis representative came to make a presenta-
Winship Cancer Center at Emory Clinic).
tion about Aredia. He was so impressed with the knowl-
In our nine years, we have grown to where we average 30-
edge and commitment of the group that he offered to
40 people in attendance each month. The complexion of
sponsor a website for us. Novartis continued to sponsor
the group constantly changes. Some newly diagnosed
this website for the next seven years!
patients come to meetings a few times, get the informa-
I registered AAMMSG with the State of Georgia as a non-
tion they need, and never come again. Others form the
profit. My reasoning was that incorporation would give
core of the group and stay to help those who will follow.
the group better stature with physicians. Unfortunately,
Please see aTlanTa sUPPORT gROUP On Page 22
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Support Groups
preview of imf support group LeaDers retreat
By Maddie Hunter
I was diagnosed with with group "veterans" before our monthly meetings. We
multiple myeloma
have a large group of approximately 300 members, with
in 2001. Although
30 to 50 people attending each meeting.
I live in New Jersey, I
I attended last year's IMF Support Group Leaders Retreat
became involved with
in North Carolina, along with my partner and caregiver,
the myeloma support
Ames Nelson, and Marilyn Alexander and her twin sister,
group in Pennsylvania,
Sharon Klein. The retreat was chockfull of very useful
The
Philadelphia
information. The presentations were cutting edge. The
Multiple
Myeloma
networking with other support groups was phenomenal.
Networking Group.
Meeting other people in leadership positions was very
At that time, Debbie
informative. The retreat's guest speaker and counselor,
Exner was one of the
Greg Pacini, got the participants to talk about the more
group's leaders and
emotional aspects of coping with myeloma. The meeting
it quickly became
also allowed us an opportunity to better know the IMF
apparent to both of us
and its leadership, and to build a stronger relationship
that I had the energy and the desire to play a stronger
with the Foundation.
role in the group. So, for one year prior to Debbie
moving out of state and leaving the group, we partnered
I would advocate that every myeloma support group
in my transition to group co-leader.
member take advantage of the wonderful opportunity
that the Support Group Leaders Retreat presents. It is a
We have a lovely structure in our group. One of the
chance to be able to immerse yourself in the most cur-
founders of the group, Marilyn Alexander, is the group's
rent knowledge that you can bring back home to your
other co-leader. Our facilitator, Lori Curtis, is a social
group, while relaxing in a supportive and nurturing
worker who's been with the group since it was founded.
environment. mt
We have a steering committee of 15 to 20 people who
NOTE: To learn more about The Philadelphia Multiple
are our decision makers. Newcomers to the group are
Myeloma Networking Group, please visit the group's website at
welcomed by greeters and encouraged to spend time
www.philadelphia.myeloma.org.
IMF HOTLINE -- continued
· Other medications that can be helpful for painful
thy.org. Like the IMF, the Neuropathy Association is
peripheral neuropathy and that require a prescription
patient-based and non-profit, and provides patient sup-
are: Cymbalta (duloxetine), Celebrex, Lyrica (pregaba-
port and education. mt
lin) and/or a Lidoderm Patch. Again, these drugs must
NOTE: Our special thanks to Deborah Doss, oncology nurse
be prescribed and monitored by your physician.
extraordinaire at the Dana-Farber Cancer Institute, for sharing their
· You may want to contact the Neuropathy Association
neuropathy information.
at 800-247-6968, or via the Internet at www.neuropa-
ATLANTA SUPPORT GROUP -- continued
We have a board of directors and, over the past
ity as well as adding to our base of support programs.
fifteen months, have established committees for Greeters,
The strength of the group is patients helping patients
Outreach, and Programs.
help each other, a model instituted by the IMF. Together,
As we continue to reach more myeloma patients and
we can make each other's myeloma journey less frighten-
family members, we will focus on maintaining continu-
ing and unknown. mt

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Patient & Caregiver Experience
Living successfuLLy with muLtipLe myeLoma
By Peter Tischler
I'm not the smartest guy around and, to be honest, I'd guess that many people
in our group are smarter than me. But I'm very good at one thing: I can
absorb an enormous amount of data, condense it into a summary, and com-
municate the results of that data to other people in such a way that they will
understand it. That's what I did in business and that's what I've been doing
with information about myeloma. Mostly, I do this one-on-one when people
ask for help. This editorial is an attempt to reach a larger audience of people
with our disease.
When I was diagnosed with multiple myeloma contrast. Failing to do this could cause your kidneys
(MM) and was led to believe that I would
to shut down and the only solution would be dialysis.
only be around for a few years, I thought
Injections for MRI and PET/CT scans are okay.
about what I wanted from medical science. I decided
that I wanted quality of life and a chance to survive
n Read labels on medications and over-the-counter
until a cure was found, with a reasonable quality of
products. Especially avoid non-steroidal anti-inflamma-
life during that survival. I also wanted to avoid undue
tory drugs (e.g. ibuprofen).
pain and suffering ­ I'm a bit of a wimp! As I learned
2. Avoid infections
about our disease and how to survive with it, I was often
n Limit exposure to people who have colds. Be mindful
distressed that so many people with MM had not availed
around children, especially during the cold/flu season. In
themselves of their best chances of survival and quality of
public places (restaurants, church, etc.) stay away from
life. In some cases, it was not their fault. They hadn't yet
children and anyone else who is coughing and/or sneez-
had time to learn how to optimize their chances. But in
ing; ask to be seated elsewhere. When flying, consider
other cases, both the patient and caregiver had abdicated
wearing a mask, and don't be so vain as to think it's not
their care to someone who is overworked and cannot
ok. Your life depends on being careful.
possibly devote enough time and resources to them
­ their doctor. As good as your doctor might be, he (or
n Develop a habit of washing your hands frequently.
she) doesn't have the time to do everything for you.
Always carry anti-bacterial cleaner (e.g. Purell) and anti-
bacterial wipes.
So who's going to take care of you? Who will take that
responsibility? It had better be either you or someone
n Make sure your family members get a flu shot every
who loves you, because nobody else will have the time,
year. The flu shot may not work for you, but it will defi-
energy, resources, and desire to take on the job. The
nitely work for your family and, thereby, protect you.
following is a list of things that you (patient, caregiver,
family) must know and do in order to best ensure that
n Be proactive if you do get an infection. A "simple"
you will survive with the quality of life you want.
bronchial infection can easily become a life-threatening
1. Take care of your kidneys
pneumonia with your depressed immune system.
n Drink at least three liters of non-carbonated,
n Wound infections easily turn into a septic crisis in
non-caffeinated, non-alcoholic liquid each day in order
you. If a wound is not healing properly, seek medical
to flush your kidneys.
attention quickly.
n Avoid ionized contrasts that are typically used for CT
n With your immune system, any temperature over 101
scans. Ask for alternative contrast or don't let them use
(some say 100) is cause for medical attention.
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Patient & Caregiver Experience
LIVING SUCCESSFULLY -- continued
3. Form a survival team
n Do not let your physicians "snow" you with medical
n You (patient, caregiver, family member) have to be the
jargon or condescend to you with overly simplistic expla-
head of the team. Nobody cares as much about the issues
nations. Keep asking questions until they are answered
as you do. Make sure that your caregiver has as much
to your satisfaction.
knowledge about your condition as you do. At times of
n Acquire a small cassette recorder and, with the physi-
treatment with steroids and other chemo drugs you may
cian's permission, record all appointments. Explain that
become overwhelmed with all the information you need
it's because you don't want to forget anything that is said.
to keep straight. Your caregiver is your link with sanity
Also, take notes during the appointment.
and good judgment.
n It's okay to say, "Let me think about that" when your
n We usually get a local oncologist by circumstance. If
oncologist tells you that "we're going to start treatment
that oncologist doesn't meet your needs, change oncolo-
immediately," unless he means that he's going to take the
gists. Make sure it's somebody you can count on in a
drugs also. This is a very slow-growing cancer and you
crisis (there usually will be a crisis, at some point).
need to think, research, talk with others, and even get a
n Find a myeloma specialist who can direct your treat-
second opinion.
ment. That's somebody who researches and treats only
n Ask for treatment options (that's plural) and the pros
myeloma. There aren't many, so don't be fooled into
and cons of each one. Ask why he/she favors the one
thinking that someone who has treated a few MM cases
being recommended.
is a specialist.
n When something is wrong, complain ­ loudly. When
n Have a good internal medicine physician. Hopefully,
something hurts, complain ­ loudly.
you will be in this for the long haul. You need to keep
up your general health.
n Question anything that you're not satisfied is correct,
especially with technicians and office staff. But don't
n If you have kidney problems, add a nephrologist to
become a general pain in the butt. You have to pick your
your team.
battles ­ fight and win the important ones.
n Add any other specialists for any other chronic condi-
5. Educate yourself
tions you might have.
(This may be you, your spouse, or a family member)
n Don't forget nurses ­ they know much more about
n Attend at least one IMF Patient & Family Seminar
symptom control than doctors.
and participate in it. Go to the breakout sessions and ask
questions. Spend time with other MMers there and learn
n Make sure that they all get copies of reports from
how they're surviving.
each other. This is your team ­ make sure they can work
n
together, and remember that you're the team leader.
Attend a local support group as regularly as you can.
There are things to learn and you need to feel "part of"
4. Don't be a "good" patient
a group of survivors. Even physicians can't give you what
n Make it clear, to each physician, what you (patient
other survivors can ­ their experience.
and caregiver) want and expect from your medical team
n Read the "Myeloma 101" written by Peter Tischler
members. They are often not all that concerned with
and provided by the North Texas Myeloma Support
issues (e.g. quality of life) that are important to you.
Group. It will explain your disease in lay terms.
You must make sure those other issues are considered by
everyone.
n You'll need a computer and connection to the
Internet. The IMF website has an incredible amount
n Get copies of your file records from all your doctors.
of up-to-date information that is essential to the family
By law, they cannot be withheld from you, and you need
with myeloma.
them in order to be team leader.
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Patient & Caregiver Experience
n Subscribe to the IMF's online support group of over
8. Know your doctors' limitations
1,400 myeloma members worldwide. The daily experi-
n Doctors and nurses are, in most cases, overworked
ential information is essential for anyone who wants to
and understaffed. That's the managed care system and
be proactive in his/her quest for quality survival. You
you have to learn how to best work with it and get what
might not understand much at first, but you will quickly
you need.
become knowledgeable.
6. Maintain your immune system
n Doctors make mistakes; so do nurses, technicians, and
office staff. That's a fact of 21st century life and your job
n Your immune system is defective, but it isn't dead.
is to catch the mistakes. Mistakes that have happened to
Optimize it with healthy habits:
me include:
· Reduce stress. This is important, as stress can further
· Not ordering tests that should be ordered (that's why
depress the immune system. Find ways to chill out and
you have to keep those records)
relax (in spite of it all).
· Wrong or inadequate instructions for imaging studies
· Exercise. Also important both physically and emotion-
· Not recognizing a trend (those records again)
ally. Find ways to exercise within your limitations. Low
· Miscommunication between doctor and staff
impact is best.
· Over-medicating and under-medicating
· Good diet. Don't go crazy, but try to avoid stressing
n Oncologists have a "treatment philosophy" they've
your systems with "bad" food choices.
adopted through success and failure with other patients.
· Use multi-vitamins to ensure that your systems are not
You may not even hear about a treatment from an
deprived of any essential nutrients. You might consider
oncologist because of that physician's experience with
a nutritionist or dietician. Those taking steroids must be
it. You may, on the other hand, be urged to take a drug
especially careful.
or dosage that's no longer considered cutting edge or
· In some cases, an endocrinologist might be added to
even out of common use because of that physician's
your team in order to ensure that you're staying in bal-
past experience. You must work through that with your
ance.
oncologist.
7. Keep medical records
n Oncologists may be either too aggressive or too con-
servative to suit your needs. You must deal with that or
n Trends are important. As you collect your test results,
get another oncologist.
track the important markers (good and bad) so that you
will see any trends developing. Learn which markers are
n Some oncologists are unwilling to communicate
significant and use a spreadsheet to visualize trends.
with or take direction from other oncologists, especially
myeloma specialists. Deal with that or change oncolo-
n Keep all your records in chronological sequence in
gists.
one or more binders so that you can easily access them
when needed.
n Some oncologists are unwilling to listen to or accede
to the wishes of the patient and family. Deal with that or
n Keep shorthand medical notes in your purse or wal-
change oncologists.
let: e.g. up-to-date medicine list with dosages, physicians
with their phone numbers, testing schedule (even doc-
n Some oncologists are unwilling to be educated with
tors will forget or get them wrong, sometimes).
information from you or the IMF or published studies.
Definitely change oncologists.
n Fill out important forms for possible crisis times:
Living Will, Medical Power of Attorney, and Do Not
n Know your doctors' strengths and weaknesses. Nobody,
Resuscitate (DNR). It's good to have them even if you
your doctors included, knows everything.
don't choose to use them.
COnTInUes On Page 26
800-45-CURE(87)
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Member Events
famiLy & frienDs ceLeBrate the Life of mario feDeris
By Marnette Federis
On February 25, 2005,
manage his healthcare. Our luncheon
my family celebrated
ended with hugs and much laughter as
the anniversary of the
we shared memories of Mario with one
day, only one year ago, that our
another. The luncheon was a great way to
beloved Mario Federis lost his
raise funds for IMF programs, distribute
battle with multiple myeloma.
educational information about myeloma,
We wanted to do something
and to just be with our family and friends
special to remember his life
as we continue to remember the life of a
and to help educate people
man we all love so much. mt
about the disease that has had
such a profound effect on our
family. Our special day of remembrance started with
a memorial attended by family and friends. Later, we
held a luncheon where we took the opportunity to
educate our guests about myeloma and the International
Myeloma Foundation. After a brief slideshow, our guests
watched a video provided by the IMF about the work
that they do to help myeloma patients and their families.
Mario understood the power of knowledge. By utilizing
various IMF resources to learn more about his disease,
its effects, and available treatments, he was able to better
Family & Friends of Mario Federis
LIVING SUCCESSFULLY -- continued
9. Early Warning System ­ Avoiding Crises
antibiotic (I have Levaquin), an antiviral (I have acyclo-
n Testing is used to track the disease and for tracking the
vir) and something to use for flu (I have Tamiflu).
success (or failure) of treatments. It's also important to
n Avoid unnecessary surgery, as the trauma of surgery
test when you're in plateau phase so that you will get an
might trigger an MM "flare." If surgery is necessary, have
early warning when the disease reappears.
your oncologist keep close tabs on your markers after the
· The most important early-warning test is the Freelite
surgery.
Test. This test will show disease progression before any
n Above all, react immediately when something is not
damage occurs.
right. The caregiver must make sure that the person with
MM does not "tough it out." Once in a crisis, it could be
· Some tests should be run early in your journey with
too late to stop a cascade of system failures in an immune
myeloma, even though they're not yet needed for track-
compromised person. "Toughing it out" when it comes
ing, in order to establish baseline results for tests that
to pain is ridiculous. Your oncologist should prescribe a
will be needed later in your journey. Whole-body MRI,
pain medication that will keep you comfortable. mt
quantitative immunoglobulins, and a bone density test
could be run in addition to the usual skeletal survey
NOTE: Peter and Lucy Tischler, and Jerry and Marcia Sawyer,
are co-leaders of the North Texas Myeloma Support Group. This
with x-rays.
article fist appeared in the support group's January newsletter.
n Consider having prophylactic medications available,
More information can be obtained through the group's website at
http://northtexas.myeloma.org. Peter Tischler has been living with
especially if you are going to travel. Consider a good
myeloma since 1994.

www.myeloma.org

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Member Events
imf honors memBer event through research grant
"J.C." Johnson's Family and Friends Raise $90,000 to Fight Myeloma
Residents of Saint Cloud, Minnesota, are mobilizing tee. "The event has become a favorite for so many ­ it is
friends and neighbors throughout the Minneapolis
often a sell-out ­ and we think it is because people truly
metropolitan area to support the upcoming
enjoy having a great time while making a difference in the
7th annual "J.C." Golf Tournament to benefit the
lives of so many."
International Myeloma Foundation.
To mark the outstanding contribution of the J.C. Golf
Tournament, Janet Carol "J.C." Johnson will be named
on the 2006 Brian D. Novis Research Grant that the IMF
will award to an outstanding researcher in the field of
multiple myeloma later this year. This honor recognizes
the tournament committee's dedication and commitment
to funding research to find a cure for multiple myeloma.
Shelley zins, Betty zins, John Spanier, and Mari Johnson
at the 2nd annual "J.C." Golf Tournament
Janet Carol "J.C." Johnson lost her four-year battle with
multiple myeloma in July of 1999. About two months
later, a group of family and friends gathered for a round of
golf. While sharing memories of J.C., someone remarked
that it had always been her wish that her family and
friends continue the fight against cancer by support-
ing cancer research whenever possible. Suddenly, it was
Bob zins (third from left), David Johnson (second from right),
as if everyone had the same idea at the same time! The
and friends at the 6th annual "J.C." Golf Tournament
organizing committee for the first annual "J.C." Golf
Tournament was formed on the spot, with Mari Johnson,
"We are so grateful for the Johnsons' fundraising efforts,
Shelley Zins, and Betty Zins taking on the brunt of the
and the dedication of their friends and family who sup-
work.
port the J.C. Golf Tournament every year," said Susie
Novis, IMF President. "Events such as these raise signifi-
The first "J.C." Golf Tournament took place in May of
cant dollars for myeloma research and patient programs
2000, and brought together 75 friends who collectively
every year. Their determination and hard work inspire us
raised more than $8,000. Last year, the 6th annual golf
and provide much-needed support for patients and family
tournament brought together 180 golfers plus 50 guests
members everywhere."
and volunteers to celebrate the life of "J.C." and the spirit
of camaraderie, while supporting the myeloma commu-
This year's tournament will take place on May 20th at
nity. Since its inception, the J.C. Golf Tournament has
the Wapicada Golf Course in Saint Cloud. The event will
raised $90,000 for myeloma research.
feature 18 holes of golf, and putting and hole-in-one con-
tests followed by dinner, a silent auction, and entertain-
With the continued support of family, friends, and the
ment. Registration begins at 11 AM and the shotgun start
myeloma community, this year's tournament will be
will take place at 12:30 PM The community is invited to
bigger and better than ever. "We are extremely proud
attend this event and/or to show their support by making
of the people who support this tournament each year
a donation at http://tinyurl.com/kj6ml. For more infor-
through their participation and contributions," said
mation about the event, please contact David Johnson at
David Johnson, current chair of the tournament commit-
952-546-6000 or Bob Zins at 320-253-4449. mt
800-45-CURE(87)
7

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Member Events
music against myeLoma
By Slava Rubin
Music, cheese, cupcakes, and an intimate venue Leigh. Cheese from Artisanal Premium Cheese Center
in the heart of Manhattan! These were the key
and cupcakes from Sugar Sweet Sunshine highlighted the
ingredients for "Music Against Myeloma," a
epicurean delights for the evening. "I am not sure why
charity event to raise awareness and funds for multiple
I don't have cup-
myeloma research in tribute to my father, Mark Rubin,
cakes and beer
who passed away from this disease in 1993. On April 5,
more often!" said
2006, nearly one hundred Rubin family members and
one anonymous
friends gathered at Serena Bar in Chelsea. Together, we
patron. Specially
were able to raise nearly $10,000 for the International
designed socks
Myeloma Foundation.
with a "Cancer
Sucks"
slo-
The event was
gan were made
made success-
available care of
ful through the
Cecilia Rubin.
help of many
Slava with his mother, Dr. Emma Rubin
s u p p o r t e r s ,
In between the
and included
performers' sets, the crowd heard from Michael Katz,
music by Lost
member of the IMF's Board of Directors, who spoke
in October
about the importance of grass roots fundraising efforts
(led by Matt
and the amazing strides that myeloma research has made
Ostrower) and
since 1993. My mother, Dr. Emma Rubin, and I would
Josh Walker
like to extend our heartfelt gratitude to everyone who
accompanied
participated in this unforgettable evening and stepped
Slava and friends at the
Music Against Myeloma event
by Samantha
forward to make a difference. mt
2006 memBer events caLenDar
May 20, 2006 ­ JC Invitational Golf Tournament ­
July 22, 2006 ­ WAMP SWIM-A-THON 2006 ­ Wampanoag
David Johnson, 952-546-6000, DJohnson@borkonlaw.com,
Country Club, 60 Wampanoag Dr., West Hartford, CT,
Wapicada Golf Course, Sauk Rapids, MN
Contact: Liz Stafford, (860) 778-3766
May 20, 2006 ­ Leona Cravotta Memorial Golf Tournament ­ August 28, 2006 ­ Corporate Cup Challenge ­
Katelyn Martin, 540-894-5861, kmm9v@cms.mail.virginia.edu,
Brad Springer, 630-848-1335 ­ brad@hhpmail.com,
Tanyard Country Club, Louisa, VA
Cross Creek Country Club, Naperville, IL
May 20, 2006 ­ Ralph Ferrizzi Memorial Golf Tournament ­
September 9, 2006 ­ Walk For The Cure ­ Eve Friedli,
Ralph Ferrizzi, Jr., 610-438-1619, Ferrizzi@rcn.com,
507-280-5992, EFriedli@HartlandFuels.com, Rochester, MN
Green Pond Country Club, Bethlehem, PA
October 14, 2006 ­ Second Annual Myeloma Walk ­
June 10, 2006 ­ Terry DuBois' Birthday Bash for Myeloma ­
Lake Oseola, University of Miami, Miami, FL ­ Contact: Denise
Diane DuBois ­ 715-425-2817, Ellsworth, WI
Vidot peaches2822@aol.com
July 9, 2006 ­ Multiple Musicians Against Multiple Myeloma­ November 3, 2006 ­ Arizona Fundraiser (details to follow)
Naomi Margolin, 516-487-6712, NMargolin@aol.com,
Tupelo Honey, Sea Cliff, Long Island
For up-to-the-minute information on IMF Member Events,
please refer to the IMF's web site ­ www.myeloma.org ­ and click the "Events" tab.
8
www.myeloma.org

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Member Events
our guiDing Light shines Bright
By Lisa Mehalick
One of my mother's greatest attributes is her ability to teach through example
and, when she was diagnosed with myeloma in February of 2005, she continued
to acknowledge the many blessings in her life. Throughout her battle with
myeloma, she has shown her children and grandchildren how this journey can
be one of great healing, physically and spiritually. She has found the silver lining
in the dark cloud of myeloma by starting our family on a path of fundraising to
help the myeloma community. Our children's birthdays, Christmas celebrations,
etc. became an opportunity to seek donations for the IMF in lieu of gifts. This
has been met with the great generosity of our friends and family, and made them
Lisa Mehalick (right) with her mother,
feel like they're helping an important cause. We have been able to spread the word
Yvonne Yaksic, and son, David
about myeloma and raise funds to find a cure. Now that is a true celebration! mt
Member Events Updates
Ribbon of Hope Ornament
Recipes for Research
Whether you hang it on your holiday tree, your wal ,
Extra! Extra! Marilyn Alexander, the Philadelphia
or another creative place, the IMF's 4" Ribbon of Hope
Support Group, and the IMF community have come
ornament will bring a message of hope to anyone you
together to create one terrific cookbook and handy
give it to. Fashioned after our popular Ribbon of Hope
kitchen reference. The original cookbook was a huge
lapel pin, the enameled ornament comes in a black velvet
success, and if you have one, you'll want to add this
pouch with a gold ribbon tie. We have a limited number
all-new version to your collection. From Autumn
available, so even though it's early, get your order in
Apple Cake to Veal Stimbarada, there is something
now! At only $10 each, they will make wonderful gifts. If
you would like to place an order, please contact Rolake
here for every taste. Favorite recipes, tried and
Bamgbose at 800-452-CURE (2873) or rbamgbose@
true: Vegetarian Hot and Sour Soup, Crab Souffle
myeloma.org. You can also order online with a credit
Casserole, Mom's Chicken (who can resist that!),
card or simply mail a check to the IMF.
Spaghetti Toss, No Carb Cheesecake and much more!
And if you aren't in the mood to cook tonight, there
is an entire section with tips on everything from set-
ting the table to stain removal. Did you know that the
Mail for the Cure
twist tie on a loaf of bread can tell you what day it was
Many of you requested envelopes to partici-
delivered to the store? Move over Heloise! And who
pate in our Mail For The Cure campaign, but
were unable to send them out by the end of
can resist Marilyn's Recipe for Friendship:
the year. So we have decided to extend the
· 3 Phone Calls a Week
program for another six months. So far, the campaign has raised over
· 2 Cups of Kindness
$8,000 to support the IMF's programs, and we know there will be a
lot more coming in judging by your requests for information. If you
· 1 Letter a Month
have any questions about starting or continuing your participation in
· 4 Saturdays of Shopping
this program, or would like to request more envelopes and/or a letter
template, please contact Rolake Bamgbose at 800-452-CURE (2873)
Mix all ingredients carefully. Take turns stirring. Heap
or rbamgbose@myeloma.org.
with hugs and lace with laughter. Sweeten to taste
and sprinkle with smiles. Bake until Memories turn
golden.
Cell Phones 4 A Cure
To paraphrase Brian Novis, "One can make a difference,
Act now to order your copies of Recipes for Research.
two can make a miracle." Being part of the miracle can be
They are only $15, including shipping and handling,
as easy as donating your old cellular phone. Or you can take
with all proceeds going to support the IMF's research
up a collection of old cell phones from family, friends, and/or
programs. This is a great gift for Mother's Day. If you
business associates. Please mail your phones to the IMF at:
would like to place an order, please contact Rolake
12650 Riverside Dr. #206, North Hol ywood, CA 91607.
Bamgbose at 800-452-CURE (2873) or rbamgbose@
To learn more about this wonderful fundraising program, please
myeloma.org. You can also order online with a credit
call Kemo Lee at 800-452-CURE (2873).
card or simply mail a check to the IMF.
800-45-CURE(87)

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Scientific Advisor Profile
a. keith stewart, mB, chB, mBa
Myeloma Today: Dr. Stewart,
MT: What has been your experience
please tell us a little about your
at Mayo Clinic in Scottsdale?
medical training and experience.
Dr. Stewart: The myeloma team here
Dr. A. Keith Stewart: I graduated
was formed just last year, and includes
from Medical School at the University
Drs. Rafael Fonseca and Leif Bergsagel.
of Aberdeen in Scotland, and did my
After years of working together while
internship at Glasgow Royal Infirmary. I
thousands of miles apart, we are all
trained in Internal Medicine at Queen's
pleased to finally be working at the same
University in Kingston, Ontario,
center. This has been a very exciting start-
Canada. I specialized in Hematology and
up period. We share a lab, we have shared
Oncology at the University of Toronto
clinical meetings, and we have made
and was a Medical Research Council
some exciting discoveries. The three of us
Fellow at the New England Medical
are a good team, and I think it will help
Centre in Boston. From 1992 to 2005, I
myeloma patients to have us working
was a consultant at the Toronto General
together.
and Princess Margaret Hospitals,
University of Toronto, where I held the
Dr. A. Keith Stewart
MT: What is the focus of your
Scott-Whitmore Chair in Hematology.
Senior Associate Consultant ­
current activities in myeloma?
In 2002, I was appointed the inaugural Division of Hematology/Oncology Dr. Stewart: We are most interested in
Professor of Medicine ­
director of the McLaughlin Centre for
defining the genetic basis of myeloma,
Mayo Clinic College of Medicine
Molecular Medicine at the University of
Mayo Clinic
and developing therapies that target that
Toronto. Last year, I joined Mayo Clinic
Scottsdale, Arizona
genetic disruption. My colleagues are
in Scottsdale, Arizona.
most interested in finding the genes
MT: How did you first become interested in
that are going awry, and my lab and clinical practice is
multiple myeloma?
focused on finding drugs that are most helpful in treating
myeloma. We have four Phase I clinical trials currently
Dr. Stewart: My basic research was in B lymphocyte
ongoing, and we are developing or running a number of
biology. In 1992, transplant for myeloma was the state-
large Phase III clinical trials. We are particularly excited
of-the-art approach to myeloma treatment. I was trained
about exploring inhibitors of fiberblast growth factors
in stem cell transplant, so I married my two interests
receptor 3 (FGFR3), which affects 15% of myeloma
together: basic research into this type of cancer and clini-
patients. We are also investigating a promising new pro-
cal practice with stem cell transplant as the focus.
teasome inhibitor that has a different spectrum of activ-
MT: When did you become involved with the IMF?
ity than bortezomib, although we do not yet know if it
will be better than the existing drug.
Dr. Stewart: Since 1992, I have been heavily invested
in the field of myeloma. I became aware of the IMF
MT: Based on your clinical experience in both
in 1993 when I attended the International Multiple
Canada and the US, how would you compare the
Myeloma Workshop at Mayo Clinic. A few years later I
two health systems?
joined the IMF Patient & Family Seminar program as a
Dr. Stewart: Both systems have their own unique
faculty member. In 2004, I was invited to join the IMF
advantages and frustrations. In Canada, some of the
Scientific Advisory Board and participated in my first
newer myeloma drugs are either not available or difficult
Advisors' Retreat, which focused on molecular testing
to access. The government there has not been responsive
and its clinical applications. The IMF does an excellent
to the needs of the myeloma community ­ they have
job in the area of patient education, and I want to con-
refused to pay for certain drugs, making it difficult for
tribute to that cause in whatever way I can. I am inter-
clinicians to offer the optimal care to their patients. But,
ested in what's best for myeloma patients, particularly in
in Canada, doctors can care for their patients without
the area of improving available treatments.
Please see a. KeITH sTeWaRT On Page 31
0
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Board of Directors Profile
igor siLL
Myeloma Today: Mr. Sill, please tell us a
until he finishes college. My other son, Kevin, is a patent
little about your educational and professional
attorney in New York City.
background.
MT: Has your life been touched by
Igor Sill: I received my MBA from Oxford
multiple myeloma?
University, Said Business School, and attend-
ed the University of California, Berkeley,
Mr. Sill: My wife was diagnosed in November
as well as Stanford University's Graduate
of 2005, with 90% myeloma cells. She has
School of Business SEP program, Advanced
already had one stem cell transplant with Dr.
Management College, and Strategic
Bart Barlogie in Little Rock, Arkansas. Her
Marketing Management. I also attended
second transplant is scheduled for the end of
Harvard University's GSB Venture Capital
May. This is a highly individualized disease,
Program, and Stanford University School
and patients have to make their own individ-
of Law's Directorship College Program.
ual decision about treatment. Given the range
Currently, I am the Managing Partner of
of options, Cindy opted to dive in completely,
Hambrecht Geneva Ventures, Managing Director and
rather than just stick her toe in the water. I've taken
co-founder of Geneva Venture Partners I & II, and the
some time off to be her caregiver. She has had numerous
Founder and Chairman of GenevaGroup International,
lesions and broken bones, with one remaining, but there
Inc. Prior to forming GenevaGroup, I served as Vice
is no evidence of myeloma in it. Although we are very
President for Visual Engineering, founding management
early in our myeloma journey, her outlook is good.
team member of INGRES, and Director of Sales and
MT: How did you become involved with the IMF?
Support for MicroPro International (renamed WordStar)
during its high-growth pre-IPO period. Prior to enter-
Mr. Sill: My wife and I were hit by the diagnosis pretty
ing the software industry, I served as General Manager,
hard. The very next day, we met a myeloma patient who
EIS, and managed the internal merger and integration of
lives just a few miles from us, and she referred us to the
EXXON Corporation's three high technology divisions:
IMF website. That night, I visited the site and was very
Qwip, QYX, and VYDEC.
impressed with the educational content. Now I want to
do whatever I can to provide the resources for the physi-
MT: What about your family life?
cians and researchers to combat and eradicate myeloma
Mr. Sill: My wife, Cindy, and I enjoy the wine coun-
as quickly as humanly possible. At the end of the day,
try of Northern California, and are starting to put in a
nothing happens without capitalization of these efforts,
vineyard at our St Helena home. My daughter, Jessica,
and I believe that the best vehicle to do this is the IMF.
works in the business at Geneva Venture Partners. My
I see Susie Novis as the propelling entrepreneur behind
son, Weston, recently joined the Army National Guard
the IMF, and I want to do whatever I can to support her
but he is in college so he won't be starting his service
efforts. mt
A. KEITH STEWART -- continued
being hindered by the patients' lack of finances or insur-
be unable to pay for them either on their own or via
ance. My experience in the US has been quite depress-
inadequate insurance coverage.
ing at times. There are patients here who I feel can be
MT: Please tell us a little about your life outside
looked after but their insurance won't allow them to be
of myeloma.
treated. So, under Universal Health Coverage in Canada
everyone gets good patient care but has to cope with the
Dr. Stewart: My wife, Bridget, is a veterinarian. We have
government's unwillingness to pay for costly new drugs,
three kids, ages 10, 8, and 5, who are involved in every
while in the US everyone can access the drugs but may
sport conceivable. And when I am not looking after
them, I am an enthusiastic but atrocious golfer! mt
800-45-CURE(87)
1

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Letters to the IMF
Fighting with everything you've got
When I was diagnosed with myeloma, I believed the chemo. Ask a physical therapist to show you appro-
no one understood how bad I felt, how much
priate movements. Yoga may NOT be a good idea if you
I hurt, how tired I was, how afraid, etc.
have bone damage.
The problem is that no one can do anything about it
8. Thankfulness: Be very thankful to all your caregivers
EXCEPT US! We are our own best friends on this rocky
who have the most difficult and stressful job of all.
road. Here are a few things I did:
There will be times when you won't feel thankful at
1. Psychology: Had about four visits with a psychologist
all but, believe me, they hurt a lot, too.
and finally accepted my problem instead of denying
9. Education: Take advantage of attending seminars in
it. She also taught me to do a process diary where my
which you will learn more about myeloma and the
daily task was to write down ten positive things that
latest treatments. Knowledge is power. Take charge
made each day a little better. My first entry was a bit-
of your life. You'll be glad you did and happier when
ter and bald, "Got a normal bowel movement!"
you see that helpless look disappear from your family
2. Antidepessants: Took a tricyclic antidepressant (ami-
members' faces.
tryptiline) which helped with neuropathy, but par-
With love and hugs,
ticularly with those middle of the night waking night-
Ann Collins Hill
mares where you wonder what is coming next, how
long have you got, etc.
The IMF
3. Prayer and/or meditation: If you are religious, pray. If
not, take up some kind of meditation.
The International Myeloma Foundation is a group of
very caring, friendly, and knowledgeable folks who have
4. Support: A cancer support group is likely to have truly
a great desire to do all in their power to assist every
inspirational folks as members. Some are enduring
myeloma patient possible in their battle with myeloma.
much more than you'll ever suspect and from them
you will truly learn to cope.
We have experienced first-hand the IMF Patient & Family
5. Hobbies: A sedentary hobby gives your mind some-
Seminars that are extremely informative and provide
thing to enjoy. At our local Gilda's Club I took up a
education about myeloma and provide hope to us that
watercolor class. I found out how very untalented I am
someday this disease will either have a cure or become a
but the two-hour class was amazingly relaxing. I felt
chronic disease with an acceptable quality of life.
awful because of the chemo in my system but painting
It gives us great comfort to know that if there are any
took my mind away from the cancer obsession.
questions that come up in Jerry's treatment, the IMF
6. Don't feel guilty about taking time out for yourself: I
hotline is there to assist. The Hotline monitors are ready
went to a program called Healing Touch where nurses
with up-to-date answers, and if they do not know the
at a cancer support center realign your energy centers
(called "shakras"). It felt wonderful whatever it was!
There may be several of these alternative programs in
your area, but make sure that the program will not
jeopardize your health. The American Cancer Society
has a marvelous program called "Look Good, Feel
Better" which provides you with a free wig and cos-
metics reputedly worth $100. A cosmetologist shows
you how to use the makeup and will also style the wig
if there is enough time.
7. Exercise: There are gentle exercises you can do,
even while sitting down, which will help dispel that
exhausted flu-like feeling in your arms and legs from
Susie Novis with Marcia and Jerry Sawyer

www.myeloma.org

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Letters to the IMF
Letters -- continued
answer, they have top-notch myeloma specialists to go
I received your materials and have talked with the
to for help.
Hotline's Nancy Baxter, and have received several e-mails
from her. Thank you all very much. You have helped me
The materials that are available through the IMF are
enormously after the shock, fear, and anxiety of learning
extremely informative. The Patient Handbook was easy
that I was a potential victim of multiple myeloma. Hope
to understand and very helpful when Jerry was diagnosed
to go to Philadelphia in August for the IMF Patient &
and we were trying to figure out what we were up against.
Family Seminar with my son who will be my primary
We are co-leaders of a large support group in the Dallas
care helper.
area. The IMF has been extremely helpful by providing
Paul Alexander
us with materials and information that are invaluable to
run a successful group.
mt
To share your personal stories of how you and your loved ones are
Jerry and Marcia Sawyer
coping with myeloma, or how the IMF or a support group has had an
impact on your life, please emai your letters to IMF Publications Editor,
A group of us are caretakers for a friend and colleague
Marya Kazakova, at mkazakova@myeloma.org.
with myeloma. We have received the order I placed for
various IMF materials. Your InfoPack is very good, clear,
The IMF has new publications!
reader-friendly, and attractive. The pins and bracelets
have arrived, too. Your materials have increased our
In the Understanding series: Dexamethasone and
understanding of our friend's condition and have helped
Other Steroids, Serum Free Light Chain Assays, and
us to raise myeloma awareness. Thanks for an excellent
Revlimid®, are available. Please log on to our website at
resource.
www.myeloma.org or call us at 800-452-CURE
(2873) and we will be happy to send you a copy.
Cay Jurgensen
Here are just some highlights of what we will be
bringing you in the next issue of Myeloma Today.
Coming This Summer...
· A report on the meeting of the IMF Scientific Advisory Board in Portugal
· An overview of the outcomes from the annual meeting of the
European Hematology Association
· A report from the annual meeting of the Oncology Nursing Society
· A sneak preview of the upcoming American Society of Clinical Oncology meeting
· An update on the IMF's Bank On A Cure® myeloma research initiative
· A report from IMF Research Grants recipient Dr. Nicola Guiliani
· A profile of the IMF Patient & Family Seminar program
· A report on our Myeloma Canada affiliate
· Important supportive care information on oral care and
Osteonecrosis of the Jaw
· A report from the IMF Support Group Leaders Retreat
If you or someone you know wants to be kept up-to-date regarding all the significant developments
in the field of myeloma, as well as news about the IMF and other topics of interest to the members of
the myeloma community, please contact the IMF to subscribe to this free-of-charge quarterly publication.
800-45-CURE(87)

---

News & Notes
National Physician of the Year:
friends were more likely to view their relationship with
Bart Barlogie, MD, PhD
their doctors as a partnership, and were more comfort-
Dr. Barlogie is National Physician of the Year in the
able asking questions about treatment alternatives.
first awards given by the organization responsible for
The IMF Publishes German Language
the annual America's Top Doctors publication. Dr.
Myeloma Newsletter
Barlogie and two other physicians received the award for
The Myelom Merkur, the IMF's first German language
clinical excellence from Castle Connolly Medical Ltd.
newsletter, was inaugurated in April 2006. The idea for
during a ceremony March 15 at the Metropolitan Club
this new service came out of a meeting convened by the
in New York City. Dr. Barlogie is one of the world's
IMF in October, 2005, of German-speaking support
leading experts in the diagnosis and treatment of mul-
group leaders in Heidelberg, Germany. The Myelom
tiple myeloma. "I am thrilled by this recognition by my
Merkur will feature translations of medical and scientific
fellow physicians and Castle Connolly for our continu-
articles from Myeloma Today and the Myeloma Minute.
ing work at the Myeloma Institute to find a cure for
If you or someone you know might want to receive
multiple myeloma," said Barlogie, who in 2004 received
the Myelom Merkur, please contact Gregor Brozeit at
the IMF's Robert A. Kyle Lifetime Achievement Award
merkur@myeloma.org to register for this free service. A
in recognition of his 20-year career in the treatment of
distribution system is also being set up for those without
multiple myeloma.
Internet access.
IMF Sponsors Symposium
for Oncology Nurses
Newly released information on treatment for myeloma
is critical to improving patient care. The IMF is pleased
to announce a special education symposium, Advancing
Access to Myeloma Treatment: Administration, Side
Effects, and Implications for Survival, to be held prior
to the ONS 31st Annual Congress. The event will take
Danish Multiple Myeloma Assembly Leaders Jørgen Gislinge,
place on May 4, 2006, at the Boston Convention and
Peter Randløv, and Ole Dallris meet with newly appointed
Exposition Center. The meeting is designed to meet the
Director of IMF Europe, Gregor Brozeit (second from right)]
needs of oncology nurses who manage the treatment
of myeloma patients. This activity is sponsored by the
National Cancer Survivors Day®
International Myeloma Foundation and the Institute
National Cancer Survivors Day® (NCSD) is an annual,
for Continuing Healthcare Education and supported
worldwide Celebration of Life that is held in hundreds
by educational grants from Celgene Corporation and
of communities throughout the United States, Canada,
Millennium Pharmaceuticals.
and other participating countries. Participants unite in a
Temple University Study Published
symbolic event to show the world that life after a cancer
According to a new Temple University study published
diagnosis can be a reality. In the beginning, cancer survi-
in the March 2006 issue of the Journal of Health
vor Richard Bloch (co-founder of H&R Block) and his
Communication, newly diagnosed cancer patients who
wife, Annette, held their first Cancer Survivor Rally in
use the Internet to gather information about their disease
Kansas City, Missouri, to demonstrate that a diagnosis
have a more positive outlook and are more active partici-
of cancer was not an automatic death sentence. The
pants in their treatment. For this study, the researchers
idea soon caught on in other communities. NCSD is
recruited 442 patients who called a toll-free NCI-funded
celebrating its 19th year in 2006, and is now the world's
number, where trained specialists answered questions
largest and fastest-growing annual cancer survivor event.
about the disease and directed callers to resources in
NCSD defines a "survivor" as anyone living with a his-
their area. During the survey, a strong parallel emerged
tory of cancer ­ from the moment of diagnosis through
between Internet use and the patients' feelings about
the remainder of life. To attend an official NCSD 2006
their decision-making ability. Those who used the
event in your area on June 4th, e-mail info@ncsdf.org or
Internet or received Internet information from family or
call 615-794-3006. mt
4
www.myeloma.org

---

This quarterly publication is available free of charge.
To subscribe, fill out the form below, visit www.myeloma.org, or call 800-452-CURE (2873).

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Dear Reader,
It's spring: a time of new beginnings.
In addition, the IMF and the
Winter is over, anything is possible, and a
International Working Group have
renewed sense of hope is in the air.
moved us forward by publishing three
crucial papers that will ensure better
There is much activity and momentum
treatment and outcomes for myeloma
in the world of myeloma, giving us good
patients. The Myeloma Management
reason for renewed hope. Two important
Guidelines ensure that patients today get
drugs for the treatment of myeloma, tha-
the best care possible. An updated 2006
lidomide and Revlimid, should receive
version will be available this summer.
FDA approval in the next few months; another mile-
The International Staging System provides doctors
stone for myeloma patients. These drugs would join
with the information they need to properly stage and
VELCADE as the first new therapies approved for the
treat their patients. The Diagnostic Criteria establish
treatment of myeloma in over 20 years.
the baseline criteria for defining and treating active
Dr. Julian Adams, who was responsible for the
(symptomatic) myeloma.
development of VELCADE, is now with Infinity
The International Working Group's most recent proj-
Pharmaceuticals, and he is a driving force in the
ect has been the development of the International
development of innovative new drugs. He's now
Response Criteria, which was recently submitted
spearheading the development of HSP90 inhibitor,
for publication. The Response Criteria simplify and
IPI-504. This compound in combination with other
codify the way oncologists define response to treat-
drugs holds great promise, and we anxiously await the
ment. This will allow groups throughout the world to
early trial results.
more precisely compare results of various treatments.
Amgen has developed a new antibody RANK-L
These important projects from the International
inhibitor, AMG 162, which currently is completing
Working Group have changed the landscape for
clinical trials for its use in the treatment of osteopo-
myeloma treatment and provide greater hope with
rosis. Myeloma trials using this new antibody are just
each passing year.
getting underway.
I'm proud of what the IMF has been able to achieve,
There is also a lot of excitement about using the novel
through its collaboration with doctors and research-
agents such as thalidomide, Revlimid and VELCADE
ers from institutions around the world. I would like
in new combinations, along with prior chemo agents.
to take this opportunity to extend to them a very
Multiple trials combining these drugs are taking place
heartfelt thank you ­ we couldn't have done it
around the world.
without you!
Warm regards,
All this activity means that something big is going to
happen soon!
Susie Novis
International Myeloma Foundation
NON-PROFIT
12650 Riverside Drive, Suite 206
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
U.S.A.
www.myeloma .org
PAID
N. Hollywood, CA
(800) 452-CURE (2873)
PERMIT NO. 665
Address Service Requested
F
oundation
y
eloma
M
I
nternational
©2006,
U.S.A.
in
Dedicated to improving the quality of life of myeloma patients while working towards prevention and a cure.
P
rinted

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