Myeloma
Today Summer2010
Volume 8 Number 3
A Publication of the International Myeloma Foundation
Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
Scientific & Clinical News
Profiles in the News
Dr. S. Vincent Rajkumar of the Mayo Clinic in
Allan Weinstein, myeloma patient and member of the
Rochester, MN, discusses the concept of "cure ver-
IMF Board of Directors, is profiled in the "Investing
sus control" in multiple myeloma. He weighs the
in the Future" feature as an individual who is making
pros and cons of the two treatment philosophies.
a substantial investment in the myeloma community
Should myeloma patients be treated aggressively in
and the path to a cure. We hope that his story of how
an attempt to potentially cure the disease, knowing
that this is unlikely and that such therapies come
and why he has chosen to commit to the fight against
with the risk of adverse events and substantially
myeloma will inspire you, as it inspires us. PAGE 18
decreased quality of life? Should myeloma be treated
as an incurable but manageable condition with the goal of controlling the
Charty Bassett,
disease for as long as possible, balancing efficacy and quality of life?
a recently diagnosed myelo-
PAGE 5
ma patient, shares the story of how a sore
Prof. Antonio Palumbo of the University of Torino
hip led to the diagnosis that dropped Charty
and the Italian Multiple Myeloma Study Group
and her husband into what felt like another
responds to a retrospective study performed by
dimension, a bleak period of uncertainty
investigators at the Mayo Clinic who looked at the
and fear faced by many newly diagnosed
impact of response failure with thalidomide or
patients and their loved ones. Charty writes
lenalidomide regimen as induction therapy prior
about the empowerment of knowledge and
to autologous stem cell transplantation in multiple
the "web of caring" that has materialized as a profound reminder that she
myeloma. The value of the study finding is in the
is not alone on this journey. PAGE 19
possibility of predicting response early in the thera-
py, thus allowing for a better assessment of treatment choices available to
the patient after the initial courses of induction therapy. PAGE 7
Also in this issue...
Supportive Care
Dear Reader by IMF president Susie Novis PAGE 3
Sandra Rome, member of the IMF Nurse Leadership
Letters to the IMF PAGE 4
Board (NLB) and leader of the NLB Functional
Mobility and Safety task force, answers questions
Spotlight on Advocacy Report on the Myeloma Awareness Month PAGES 8-9
about optimal functioning, fall risk, and planned
Patient & Family Seminar Review by newly diagnosed patient PAGE 10
activity for newly diagnosed multiple myeloma
patients, patients undergoing treatment, and long-
NLB Update Report from ONS by Joseph D. Tariman PAGE 11
term survivors. Mobility challenges vary among
Support Group
survivors, but problems with a lack of mobility
People Helping People PAGE 15
or activity affect quality of life and also may be a
International Affiliates Report from Australia PAGE 17
hindrance to continuing treatment. PAGE 12
Member Events raise funds to benefit the myeloma community PAGES 20-21
IMF Hotline Coordinators answer a
2010 IMF Calendar of Events
question about myeloma informa-
BACK COVER
tion provided via computer and
internet. Information includes IMF
website resources, the Myeloma
Listserv, the Myeloma ManagerTM
LOOKING FOR A LOCAL MYELOMA SUPPORT GROUP?
Personal Care AssistantTM and Personal Memory Stick, and miscellaneous
If you are interested in joining a support group, please visit our website
other resources and services. There are many computer-based resources
at www.myeloma.org or call the IMF at 800-452-CURE (2873).
and services that might be useful to patients and caregivers. PAGE 13
This issue of Myeloma Today is supported by
Binding Site, Celgene Corporation, Millennium: The Takeda Oncology Company, and Onyx Pharmaceuticals.
Inter
P
nationallaceholder
Myeloma Foundation
Founder
President
Brian D. Novis
Susie Novis
Board of Directors
Chairman Dr. Brian G.M. Durie
Tom Bay
Michael S. Katz
Dr. Edith Mitchell
Matthew Robinson
Allan Weinstein
Loraine Boyle
Benson Klein
Charles Newman
E. Michael D. Scott
Amy Weiss
Mark Di Cicilia
Dr. Robert A. Kyle
Susie Novis
Igor Sill
Scientific Advisory Board
Chairman Robert A. Kyle, USA
Scientific Advisors
Raymond Alexanian, USA
Thierry Facon, France
Antonio Palumbo, Italy
Kenneth C. Anderson, USA
Dorotea Fantl, Argentina
Linda Pilarski, Canada
Michel Attal, France
Jean-Paul Fermand, France
Raymond Powles, England
Hervé Avet-Loiseau, France
Rafael Fonseca, USA
S. Vincent Rajkumar, USA
Dalsu Baris, USA
Gösta Gahrton, Sweden
Donna Reece, Canada
Bart Barlogie, USA
Morie A. Gertz, USA
Paul Richardson, USA
Régis Bataille, France
John Gibson, Australia
Angelina Rodríguez-Morales, Venezuela
Meral Beksaç, Turkey
Hartmut Goldschmidt, Germany
David Roodman, USA
William Bensinger, USA
Roman Hajek, Czech Republic
Jesús San Miguel, Spain
James R. Berenson, USA
Jean-Luc Harousseau, France
Orhan Sezer, Germany
Leif Bergsagel, USA
Joy Ho, Australia
Kazayuki Shimizu, Japan
Joan Bladé, Spain
Vania Hungria, Brazil
Chaim Shustik, Canada
Mario Boccadoro, Italy
Sundar Jagannath, USA
David Siegel, USA
Michele Cavo, Italy
Douglas Joshua, Australia
Seema Singhal, USA
J. Anthony Child, England
Michio M. Kawano, Japan
Alan Solomon, USA
Raymond L. Comenzo, USA
Henk M. Lokhorst, The Netherlands
Pieter Sonneveld, The Netherlands
John Crowley, USA
Sagar Lonial, USA
Andrew Spencer, Australia
Franco Dammacco, Italy
Heinz Ludwig, Austria
A. Keith Stewart, USA
Faith Davies, England
Jayesh Mehta, USA
Guido J. Tricot, USA
Meletios A. Dimopoulos, Greece
Håkan Mellstedt, Sweden
Benjamin Van Camp, Belgium
Johannes Drach, Austria
Giampaolo Merlini, Italy
Brian Van Ness, USA
Brian G.M. Durie, USA
Gareth Morgan, England
David Vesole, USA
Hermann Einsele, Germany
Nikhil Munshi, USA
Jan Westin, Sweden
Amara Nouel, Venezuela
Headquarters
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607-3421 USA
Tel: 818-487-7455 or 800-452-CURE (2873)
Fax: 818-487-7454
Email: TheIMF@myeloma.org Web: www.myeloma.org
IMF Staff
Executive Director
David Girard (dgirard@myeloma.org)
Chief Financial Officer
Senior Global Analyst
Senior Vice President,
Vice President,
Vice President,
Jennifer Scarne
Dan Navid
Strategic Planning
Development
Clinical Education & Research Initiatives
(jscarne@myeloma.org)
(dnavid@myeloma.org)
Diane Moran
Heather Cooper Ortner
Lisa Paik
(dmoran@myeloma.org)
(hortner@myeloma.org)
(lpaik@myeloma.org)
Database & Inventory Control
European Programs
Regional Co-Director, Support Groups SE
Betty Arevalo (marevalo@myeloma.org)
Gregor Brozeit (greg.brozeit@sbcglobal.net)
Andrew Lebkuecher (alebkuecher@myeloma.org)
Director of Advocacy
Advocacy Assistant
Specialty Member Services Coordinator
Arin Assero (aassero@myeloma.org)
Meghan Buzby (mbuzby@myeloma.org)
Kemo Lee (klee@myeloma.org)
Inventory Control Associate
Director, Support Groups Outreach
Development Associate
Alci Avelar (aavelar@myeloma.org)
Kelly Cox (kcox@myeloma.org)
Randi Lovett (rlovett@myeloma.org)
Director of Member Events
Hotline Coordinator
Development Intern
Suzanne Battaglia (sbattaglia@myeloma.org)
Paul Hewitt (phewitt@myeloma.org)
Kerri Lowe (klowe@myeloma.org)
IT Consultant
Meeting & Event Services
Publication Design
Zsolt Bayor (zbayor@myeloma.org)
Spencer Howard (showard@myeloma.org)
Jim Needham (jneedham@myeloma.org)
Hotline Coordinator
Publications Editor
Data Specialist
Nancy Baxter (nbaxter@myeloma.org)
Marya Kazakova (mkazakova@myeloma.org)
Selma Plascencia (splascencia@myeloma.org)
Hotline Coordinator
Hotline Associate
Webmaster
Debbie Birns (dbirns@myeloma.org)
Missy Klepetar (mklepetar@myeloma.org)
Abbie Rich (arich@myeloma.org)
Regional Co-Director of Support Groups SE
Accountant
Regional Director, Support Groups NE
Joanie Borbely (jborbely@myeloma.org)
Phil Lange (plange@myeloma.org)
Robin Tuohy (tuohy@snet.net)
2
www.myeloma.org
A
Pla
Message ceho
from lder
the President
Dear Reader,
Spring is generally a time when things just seem to just "pop." Sometimes
Paul is a patient with multiple
it's expected and sometimes it's a wonderful surprise. This spring the IMF
myeloma. For the past year, their
experienced two unexpected and remarkable surprises!
continued attempts to get married
were thwarted by his unrelenting
The first happened on May 7th, when Michael McKean won the
health issues. Most recently, they
Jeopardy! Million Dollar Celebrity Invitational and the IMF was his
had to cancel plans to go to Hawaii
chosen charity. One Million Dollars for the IMF now that's what
when Paul's arm was broken and his
I call an unexpected and incredibly fantastic, heart-stopping surprise.
doctor told him not to lift anything
Dr. Durie, Suzanne
heavier than a half gallon of milk.
Battaglia and I were in
the audience for both
While at the Portland IMF Patient
days of the tournament.
& Family Seminar, the couple real-
We sat there perched on
ized that there was no time like the
the edge of our seats,
present, so they asked me if I knew anybody that could marry them the
clutching good luck
next day.
charms and each other. I
As it turned out, Dr. Brian Durie, co-founder of the IMF and Chairman of
think the only other per-
the its Board of Directors, had previously registered as a minister with the
son who was as nervous
Universal Life Church at the request of some dear friends who wanted him
as we were was Michael's wife Annette O'Toole who was also in the audi-
to perform their ceremony last year. As a faculty member at the Portland
ence cheering for her husband. When it came to the final Jeopardy ques-
seminar, he was on hand to perform the ceremony for Paul and Robin.
tion this was it, the moment we were waiting for... Jane Curtin played
a great game but got the answer wrong and
During the breakout sessions on Saturday afternoon, we worked with the
had bet everything. Cheech Marin played a
hotel to make the wedding as memorable and special for the couple as
so-so game (unlike him as he's really smart),
we could. The hotel prepared a bouquet for the bride, a three-tier white
got the answer right but didn't have enough
wedding cake, and poured sparkling apple cider into champagne glasses.
money to win. Then it came to Michael, he
Then we went to work writing a ceremony, displaying an image of a
too got the answer wrong, BUT he didn't
Hawaiian beachfront wedding arch on the
bet that much, so his winnings from the day
projection screen, and creating a playlist of
before combined with his total for that day
music for the entrance and recessional.
made him the MILLION DOLLAR winner!!
Dr. Robert Kyle, one of the world's leading
We leapt out of our seats, cheering, crying
experts on myeloma who is often called the
and hugging everyone in sight. In Michael's
"father of myeloma," stepped in to walk the
honor and in memory of his friend Lee
bride down the aisle. When they entered the banquet room, everyone
Grayson who died of myeloma, we've established the McKean/Grayson
stood and applauded as the bride was escorted to front of the room to
Fund and you'll learn more about that in the near future.
stand next to her groom.
Now you'd think that would do it for "Spring Surprises" but wait
There was something very touching about this impromptu wedding, and
there's more...
all of us in attendance were keenly aware of this as we stood to witness
the joining of such longtime friends. Who
On Friday, May 20, 2010, the IMF kicked off our annual Patient & Family
better to appreciate the trials and tribula-
Seminar program in Portland, Oregon at the downtown Embassy Suites
tions of living with myeloma than the 150
Hotel. Each year, we visit four cities across the country, bringing with
people who have experienced exactly the
us an esteemed faculty ranging from top myeloma physicians to nutri-
same thing?
tional specialists and more. Patients and their caregivers in attendance
spend two days learning about the disease, treatments, side effects and
When Dr. Durie pronounced Paul and
quality-of-life issues that affect them, and often leave filled with a sense of
Robin as husband and wife, the room
renewed hope and camaraderie with their fellow patients. But one special
erupted into a joyful blend of cheers,
couple made the Portland seminar one of the most unforgettable events
tears, and applause. It was, in fact, the perfect way to close the first IMF
in IMF's twenty-year history.
seminar of 2010 with hope, happiness, and a true sense of family.
Robin Laughlin and Paul Daurelle met in high school nearly 40 years
I can't wait to see what the summer holds in store for all of us!
ago. Over the years, their friendship dwindled as they drifted apart.
Warm regards,
A few years ago the two reconnected on Facebook and last year, they
became engaged.
Susie Novis
800-452-CURE(2873)
3
Let ers to the IMF
IMF Hotline
Hi Nancy,
Dear Debbie,
I just wanted you to know how much the members of
It has been TWO WEEKS since we spoke on the phone you were kind
Rhode Island Multiple Myeloma Support Group (RIMMSG)
appreciate the benefits of your extensive myeloma knowl-
enough to stay late to walk me through all kinds of things I am facing with
edge and the impressive manner in which you explain the complexities
this still relatively new diagnosis. I am so very thankful, and you can hardly
of this disease in a language that patients can understand. As patients and
imagine what an encouragement and a comfort it is to know that you are
caregivers, we are just so comforted and grateful, knowing that expert
right there, available to give help and advice. I am already awed by this
advice from the compassionate members of the IMF team is guiding us
IMF, and I am only barely getting started!
through the myeloma journey. Angels appear to us in many forms... they
happen to hang out at the IMF!
My husband and I have signed up for the upcoming IMF Patient & Family
Seminar, and I am really looking forward to it. I am still not really up on
Carol Murray-Rossi & members of the RIMMSG
my light chains, heavy chains, IgA kappas and all that, but little by little I
am learning. I also plan to go to the next local support group meeting.
IMF Website
Charty Bassett
I just want to say thank you. My 51-year-old husband was diagnosed with
myeloma in January and is starting treatment tomorrow. The information
Editor's Note: To read about Charty Bassett's experience as a newly
on your website has been so incredibly helpful and has answered every
diagnosed myeloma patient, please see page 21.
question we have... far better than our consultant in the UK has been able
to! I really do wish the foundation the very best and want you to know
Hi Debbie,
how appreciative we are of the work you are doing. My very best regards.
Thank you so much for helping me on the phone. The information you
Tina Spencer-Keyse
gave me was invaluable! I went online and downloaded the patient
information sheets about the "hand and foot syndrome" my husband was
If you would like to share your thoughts with the IMF or with readers
experiencing, and we followed what the sheets said. The IMF publications
of Myeloma Today, or if you wish to suggest or contribute future content
for this newsletter, please contact:
you sent us have arrived and they are also a big help. Thanks again. We
Marya Kazakova Publications Editor
couldn't get through this without people like you.
International Myeloma Foundation
Christine Lawrence
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607
mkazakova@myeloma.org.
INTERNATIONAL MYELOMA FOUNDATION
Presented by
DATE
Presenting
The IMF Hero Award to MICHAEL MCKEAN, Actor & Musician
THE
&
The Lifetime Achievement Award to
DR. SOL J. BARER, Chairman, Celgene Corporation
Hosted by
VE
RAY ROMANO
Featuring
JEFF GARLIN, KEVIN JAMES, DORIS ROBERTS, FRED WILLARD
SA
(Additional performers to be announced)
Saturday, November 13, 2010 5:30pm
The Wilshire Ebell Theatre & Club Los Angeles California
For information about sponsorship opportunities, please cal (818) 487-7455 or email: events@myeloma.org or visit: comedy.myeloma.org
4
www.myeloma.org
Scientific & Clinical
CURE VERSUS CONTROL
Myeloma Today in conversation with Dr. S. Vincent Rajkumar
Please summarize the concept of "cure versus
What is the background of this debate?
control" in myeloma.
Before the introduction of high-dose therapy with
This is a very important subject. Myeloma is a devastat-
autologous stem cell transplant (ASCT) in the 1990s,
ing and complicated disease that is still not curable. All
the goal was to control myeloma as much as possible,
of us who treat myeloma patients recognize the gravity
providing the best quality of life to the patient for the
of the situation. If we had treatments for myeloma
longest duration by use of the available chemothera-
with a reasonable probability of cure and acceptable
peutic agents. Subsequently, bisphosphonates were
toxicity, there would not be a cure-vs-control debate.
found to be effective in decreasing the incidence
All of us would surely choose cure. But the available
of bone lesions. In the past decade, three novel
treatment options, while excellent, fall far short of
agents (thalidomide, bortezomib, and lenalidomide)
being curative. Therefore we must weigh the pros and
emerged as effective anti-myeloma drugs, producing
cons of cure versus control treatment strategies.
remarkable results in numerous treatment regimens
in terms of CR rate, progression-free survival (PFS),
Cure-vs-control is the key philosophical point of
time-to-progression (TTP), and overall survival (OS).
debate among physicians and patients about the
We expect upcoming newer drugs, like pomalido-
management of myeloma. Unlike certain hematologic
mide and carfilzomib, to improve on these out-
malignancies, such as large cell lymphoma, myeloma
comes. These results have prompted a new philoso-
cannot be cured as traditionally defined, at least for
phy of treating myeloma with the goal of potential
the vast majority of patients. So, should we treat
S. Vincent Rajkumar, MD
cure rather than disease control.
myeloma patients aggressively in an attempt to poten-
Professor of Medicine
Mayo Clinic
tially cure the disease, knowing that this is unlikely and
Some groups such as the Mayo Clinic myeloma group
Rochester, MN
that aggressive therapies come with the risk of adverse
are pursuing both strategies in clinical trials, allowing
events and substantially decreased quality of life? Or, should we treat
patient choice. For example, we are currently pursuing
myeloma as an incurable but chronic, manageable condition with the goal
an approach with single-agent lenalidomide as initial therapy for myeloma
of controlling the disease for as long as possible, balancing efficacy and
with other drugs added as needed, with an emphasis on quality of life and
quality of life?
disease control. At the same time, we are testing a 4-drug combination
strategy in a separate trial in an attempt to develop a curative regimen
The cure approach involves multi-agent therapy applied in combination
for myeloma.
early in the disease course with a goal of achieving a complete response
(CR), and then sustaining it. The control approach involves administering
Please share the logic of each approach.
treatments in a sequential approach with a goal of preventing disease pro-
If cure is the goal, then CR is the logical first step, and maintaining the
gression rather than CR, but emphasizing low toxicity and quality of life.
CR is the second step. The best time to attempt to achieve a CR is early in
On the one hand, proponents of a curative approach generally feel that
the disease course. Moreover, administering the best treatments early on
therapies that work in high-risk disease tend to work even better in low-
will provide a greater chance at success. Trying to achieve and maintain
risk disease and therefore should be used for all patients with myeloma.
the highest CR rate requires more intense, more toxic therapy. However,
On the other hand, proponents of the control approach employ an indi-
many side effects are reversible, and many patients are willing to accept
vidualized, risk-adapted approach, targeting CR for high-risk patients with
high toxicity rates in exchange for the possibility of longer life. It must be
aggressive therapy, and a sequential, gentler therapy for low-risk patients
kept in mind that although OS is usually better in patients who achieve
with an emphasis on avoiding serious toxicity (such as neuropathy) at all
CR than in those who do not, this could be more a reflection of some
costs since low-risk patients are destined to live an average of 7-10 or more
patients having inherently more favorable disease prognosis. It is still
years regardless of what the sequence of treatment is.
unclear whether intensifying therapy with the sole purpose of achieving
CR for patients who are otherwise responding well to therapy actually
The cure-vs-control debate has an impact on most clinical decisions in
prolongs OS. In addition, there are many problems with our definitions
both symptomatic and asymptomatic myeloma, including choice of drugs
of CR; in myeloma, unlike in other cancers, CR really reflects profound
and intensity and duration of therapy. It also colors our interpretation of
disease reduction, but not elimination, and thus is not a surrogate for true
clinical trial results, with well-meaning investigators interpreting the same
cure (unlike diseases such as large cell lymphoma, where the majority of
clinical trial data in opposite ways depending on whether they subscribe
patients achieving CR are cured).
to the cure or control philosophy as they approach the care of patients
with myeloma. Interestingly, the journal Nature recently published an
If control is the goal, CR becomes a desirable event, but it is not the goal.
In many myeloma patients, reduction of the disease to a state similar to
article which called for a change of strategy in the war on cancer. The
that of monoclonal gammopathy of undetermined significance (MGUS) by
author makes the point that trying to control the disease may prove to be
achieving very good partial response (VGPR) may be all that is required
a better plan biologically than striving to cure it. He draws a parallel with
for best long-term survival. The logic of the control approach is that not
agriculturalists who have abandoned efforts to eliminate invasive species,
everyone needs to be subjected to the toxicity of aggressive therapy, and
and now apply insecticides only when infestation exceeds some threshold
that drugs administered sequentially with a goal of optimal quality of life
level, with the goal of producing a sustainable and satisfactory crop.
CONTINUES ON PAGE 6
800-452-CURE(2873)
5
Scientific & Clinical
RAJKUMAR / CURE VERSUS CONTROL -- continued from page 5
will result in equally long duration of life for low-risk patients with lower
Where is your position in the cure-vs-control debate?
morbidity. The control approach recognizes that myeloma is a marathon,
The answer to this question depends on what kind of myeloma we are
not a sprint, and that preserving options for later is important.
talking about. Outside of a clinical trial setting, I suggest a risk-adapted
Is there a conclusion to be drawn from interpretation of available
approach.
clinical trials data?
In high-risk patients about 15% to 25% of the myeloma population an
I think that there are three big factors that are of concern. They are:
aggressive approach to achieving CR may be the only route to long-term
1) Overestimating the clinical benefit of endpoints like PFS and TTP;
survival. We use cytogenetic abnormalities to identify these high-risk
2) Overestimating the value of a CR; and 3) Considering and treating
patients. These patients should consider: 1) a multi-drug regimen, includ-
myeloma as if it were acute leukemia. These factors are affecting the way
ing bortezomib early in the disease course; 2) CR as a treatment goal; and
in which clinical trials are interpreted and ultimately are affecting the way
3) routine maintenance therapy.
in which patients are treated clinically.
In standard-risk patients about 75% of the myeloma population I
The metrics for a new drug going through the clinical trials process in
favor a control approach. In clinical trials before the introduction of novel
order to receive FDA approval differ from the metrics that need to be
agents, patients under the age of 65 lived an average of 7 to 10 years, and
applied to non-regulatory trials, where the goal is to determine the place
the current availability of novel agents will increase their survival further.
of that new drug in the overall treatment strategy. Although with the best
For low-risk patients, my approach involves:
of intentions, it is not unusual for pharmaceutical companies, researchers,
and practicing clinicians to lose sight of this. And most patients and care-
1) Using non-neurotoxic initial therapy such as lenalidomide plus low-
givers do not have the training to correctly process statistical terminology
dose dexamethasone (Rd), and avoiding bortezomib except if patients
or clinical trial data.
have renal failure or need urgent control of disease. My rationale is to
avoid the risk of neurotoxicity (which can be severe) in low-risk patients
In regulatory clinical trials, endpoints such as PFS and TTP are meaningful
when there is no OS data indicating that using bortezomib early rather
because they often suggest clinical benefit, and since the drug being tested
than later at first relapse improves survival compared with Rd
is not approved, patients in the control arm (and patients at large) do
not have the option of getting the drug later on in the disease course. In
2) Targeting VGPR rather than CR as a goal, using treatments at the mini-
contrast, in non-regulatory trials, PFS and TTP do not carry the same value
mal effective dose with a sequential approach of less intense therapy first
because patients in the control arm do have the option of getting the same
and more aggressive approaches only when the need arises
drug later. Thus, in most non-regulatory studies, prolonged PFS or TTP
3) Allowing patients to decide between early versus delayed transplant,
does not necessarily imply clinical benefit (which would be prolonged OS
and
or patient-reported improvement in quality of life). In these situations,
PFS or TTP in the control arm must ideally be measured at second relapse,
4) Employing maintenance therapy primarily in patients who have failed
after the patient has failed use of the experimental treatment in question
to achieve a VGPR or better.
that was administered at first relapse.
In clinical trials, of course, we need to continue the search for a cure,
The ultimate goal of our therapy should be improved OS. The problem
and we need to explore both the cure and control strategies. The treat-
is OS data in regulatory clinical trials is impractical because the required
ment algorithm must also take into account patients' needs, goals,
sample size is too large and the duration of follow-up needed is too long,
and attitudes toward prolonged survival versus a better quality of life.
and it would significantly delay the FDA approval of a drug that might be
Some patients prefer a potentially curative approach despite the risk of
quite useful to myeloma patients.
adverse events; others think that quality of life is more important than a
potential cure. MT
WHAT DO YOU GET AT AN IMF PATIENT & FAMILY SEMINAR?
Education · Access to Experts · Camaraderie
Topics Covered
· What's New in Myeloma? · Ask-the-Expert
· Managing Side Effects · How to be a Better Patient
· Frontline Therapy · Transplant · Bone Disease
· Maintenance Therapy · Relapse · Novel Therapies
Regional Community Workshops (RCW)
Go to our website www.myeloma.org
If you cannot get to a P&F Seminar, consider attending a Regional
and click on the "meetings & events"tab
Community Workshop. These half-day meetings provide Education,
Access to Experts, and Camaraderie. Registration is free but you must
for more details, the most up-to-date faculty,
register. It's a great way to learn from myeloma experts, as well as
hotels and registration information.
share experiences and gain strength from others in the IMF family.
Find more details about the next RCW near you at our website.
6
www.myeloma.org
Scientific & Clinical
INDUCTION THERAPY PRIOR TO
AUTOLOGOUS STEM CELL TRANSPLANTATION
Myeloma Today in conversation with Prof. Antonio Palumbo
Your response to a study performed by
· Increasing the potency of the two-drug induction
investigators at the Mayo Clinic was recently
regimen by moving to a three-drug combination
published in Blood. Would you please explain the
that includes an additional agent, then possibly a
complex issues involved to our readers?
four-drug combination.
This retrospective study looked at the impact of
· Prolongation of induction therapy from three to
response failure with thalidomide or lenalidomide
six cycles.
regimen as induction therapy prior to autologous
· Consider the advantage of a tandem instead of a
stem cell transplantation (ASCT) in multiple myeloma.
single ASCT.
The study analyzed progression-free survival (PFS)
and overall survival (OS) in 286 patients, comparing
· Decide on consolidation or no consolidation,
patients who achieved a partial response (PR) to those
although few data are available on the role of con-
who did not achieve at least a PR or progressed during
solidation and maintenance therapy after ASCT.
therapy after induction with a regimen that contains
Three different phase 3 studies found that thalido-
thalidomide or lenalidomide.
mide maintenance improved PFS and OS. Large
randomized trials are now investigating the role
The Mayo investigators conclude that an absence of
of lenalidomide maintenance, which might offer
a response to induction therapy with thalidomide
Antonio Palumbo, MD
the same benefits as thalidomide but with less
or lenalidomide predicts a poorer outcome receiving
University of Torino and
toxicity. Data on bortezomib maintenance are also
high-dose therapy and ASCT. Study patients who did
Italian Multiple Myeloma
showing benefits in this setting.
not achieve PR during induction therapy, or those
Study Group (GISMM)
Torino, Italy
who progressed despite a short initial response during
Which are the appropriate choices to overcome poor
induction therapy, had a significantly shorter OS from
outcome still remains an open question. Despite this,
transplantation and a shorter PFS.
in newly diagnosed patients, it is reasonable to use all available options to
improve suboptimal responses.
How do you assess the value of those results?
What is your opinion about the therapy options for good-prognosis
In many clinical studies, the achievement of response, in particular the
patients?
achievement of complete response (CR) or very good partial response
(VGPR) has been considered a strong predictor of outcome, especially for
In good-prognosis patients, the best treatment option should be consid-
myeloma patients undergoing ASCT. In a recent study, both 5-year PFS
ered upfront to maximize the chance of a significant reduction of disease
and 5-year OS rates were significantly increased in patients achieving at
and a prolonged duration of remission. Clinicians should avoid the risk
least VGPR after ASCT. Unfortunately, this outcome can only be measured
of under-treating patients who respond to induction therapy or ASCT.
at the end of the entire treatment procedure including both induction and
A recent study showed that in patients who have a good prognosis, the
transplantation.
addition of consolidation after ASCT improved the CR rate from 15% after
transplantation to 50% after consolidation.
The value of the finding of The Mayo Clinic study is in the possibility of
predicting response early in the therapy, thus allowing for a better assess-
Any closing comments?
ment of treatment choices available to the patient after the initial courses
It is difficult to give patients a clear message. Further studies are needed
of induction therapy.
to assess the role of tailored therapy in myeloma. But physicians and
patients should not underestimate the difference between the outcome of
Cytogenetic markers can predict a poor outcome and the need for a more
a phase 3 trial with 600 patients and the outcome of a phase 2 trial with
intense treatment approach but suboptimal response in the early phases
30 patients. It is risky to base standard of care regimens on small Phase
of treatment may represent an advantage over biological markers for the
2 clinical trials. Evidence-based prospective phase 3 randomized clinical
treatment choice of an individual patient.
trials are essential to validate the standard of care treatment regimens for
What is your opinion about the therapy options for patients who
myeloma. MT
do not respond to induction therapy?
Editor's Note: The Continuing Medical Education (CME) article "Stem cell
If a patient has a suboptimal response to the initial treatment regimen if
transplantation in multiple myeloma: impact of response failure with thalido-
the patient does not achieve PR on a two-drug combination therapy
mide or lenalidomide induction" by Drs. Gertz, Kumar, Lacy, Dispenzieri,
from a practical point of view, an intensification of treatment should be
Dingli, Hayman, Buadi, and Hogan (Division of Hematology, Mayo Clinic,
Rochester, MN) was published in Blood on March 25, 2010.
considered to attempt to increase the patient's chances of reaching CR:
800-452-CURE(2873)
7
Education & Awareness
SPOTLIGHT ON ADVOCACY
Important policies and political issues that impact the myeloma community
By Christine Murphy
Annual Budget and
in the absence of a budget resolution, although that timeline does not
Appropriations Process Begins
have to be followed.
Earlier this year, the President released his bud-
While the House and Senate work to put together some form of a budget
get for fiscal year (FY ) 2011. Included in the
resolution, the IMF is working to ensure Congress supports increased
President's Budget was $32.09 billion for the
funding for critical myeloma research and outreach programs in FY 2011.
National Institutes of Health (NIH), an increase
Specifically, IMF advocates:
of $1 billion (3.2 percent) over the FY 2010. The
· $33.349 billion to the NIH and $5.957 billion to the NCI;
proposed NIH budget included $5.26 billion for
· $6 million to the Geraldine Ferraro Blood Cancer Program at the CDC;
the National Cancer Institute (NCI), an increase of $161 million (3.16
and
percent). While this is good news for cancer research, the President's
· $50 million for the Peer-Reviewed Cancer Research Program (PRCRP),
Budget eliminated the Geraldine Ferraro Blood Cancer Program at the
funded through the Department of Defense (DoD) Congressionally
Centers for Disease Control and Prevention (CDC), which received $4.7
Directed Medical Research Programs (CDMRP).
million in FY 2010.
The President's budget is a "blueprint" and does not have the force of
NIH Testifies About FY 2011 Research Budget
law. It is merely his formal request to Congress, and Congress is not
The NIH recently testified before the House Appropriations Subcommittee
required to adopt his recommendations. Generally, the president's bud-
on Labor, Health and Human Services, and Education (LHHS) about the
get is a political document that the Congress can consider and use as a
"crunch" NIH will face in FY 2011 when a two-year allotment of $10.4 bil-
guideline. It may follow it exactly, or reject it entirely. After the release
lion in stimulus funding for research runs out. The LHHS Subcommittee
of the President's budget, the House and Senate begin working on a
determines the annual funding level for the NIH.
budget resolution. The budget resolution sets spending ceilings (limita-
In the hearing, House appropriators spent two hours exploring topics as
tions) and determines the amount of federal spending available to the
varied as pancreatic cancer, children's health and the success rate in com-
Appropriations committees. While the Senate Budget Committee adopted
pleting cancer trials. But the ever-present scramble for money was a con-
its $3.7 trillion resolution on April 22, it has yet to come to the Senate
tinuing theme. According to NIH Director Francis Collins, NIH grant appli-
floor for a vote.
cants had a 25 to 30 percent chance of success at obtaining funding, but
Meanwhile in the House, House Democratic leaders continue to push
more recently that has dropped to 20 percent during the last 30 years. In FY
factions in their caucus to agree on a budget plan that could be moved
2011, Col ins predicted that just 15 percent of grants would be funded as
to the floor, but they will soon have to decide what to do if no deal can
the spigot of money provided through the economic stimulus law shuts off.
be reached. They are having trouble reconciling the demands of fiscal
Are You a Member of the Myeloma
conservatives, who want sharp spending cuts, and the remainder of the
Action Network?
caucus, which is concerned that such cuts would harm education and
other domestic programs.
Want to stay informed about IMF's advocacy activities? All you need to do
is to join the Myeloma Action Network at www.advocacy.myeloma.org
If the House and the Senate do not adopt a final, unified budget resolu-
and you will automatically receive e-mail advocacy alerts from the IMF. To
tion, lawmakers could turn to a process called "deeming" to set caps on
learn more about health care reform and other important advocacy issues
discretionary spending for the 12 annual appropriations bills, or they
that impact the myeloma community, please visit the IMF advocacy page
could try to move the bills without such guidance. But either course
at www.myeloma.org. MT
comes with difficulties. Adoption of a final budget resolution would clear
the way for the Appropriations committees to begin their work, and that
How to contact the IMF Advocacy Team
reality is putting pressure on leaders to decide whether to move forward
with a fiscal 2011 budget resolution.
Christine Murphy Director, Government Relations
The budget resolution establishes the total amount of discretionary
International Myeloma Foundation
Phone: 703-738-1498
Fax: 703-349-5879
spending that can be divided among the appropriations bills. But the cap
Email: cmurphy@myeloma.org
can also be set without a resolution through deeming, which has been
used in previous years when no final budget blueprint was adopted. The
Arin Assero Director of Advocacy
last time the cap was deemed was in 2006. The deeming resolution, which
International Myeloma Foundation
can be passed on its own or as part of another bill, also serves as a pro-
Phone: 800-452-CURE (2873) ext. 232
Fax: 818-487-7454
cedural enforcement tool on spending totals absent a budget resolution.
Email: aassero@myeloma.org
For now, Democratic leaders do not want to discuss what fallback options
Meghan Buzby Advocacy Assistant
are being considered, saying their immediate focus is on producing a
International Myeloma Foundation
budget resolution that all factions of their caucus can support. Technically,
Phone: 410-252-3457
May 15 is the date when appropriations bills can come to the House floor
Email: mbuzby@myeloma.org
8
www.myeloma.org
Education & Awareness
SPOTLIGHT ON ADVOCACY
Report on the Myeloma Awareness Month
By Arin Assero
Myeloma Awareness Month
Thanks to all who participated! All of these tips can be found in our
and Beyond
Advocacy Toolkit on the IMF website www.myeloma.org or directly at
As most of you know, March was Myeloma
toolkit.myeloma.org.
Awareness Month. The IMF was busy across
IN THE COMMUNITY:
the country doing our part raising awareness
Support Group Leaders fight for access
about multiple myeloma, educating patients and
to treatment The Oral Drug
their families as well as the general public, and
Reimbursement Parity
continuing our dialogue with members of Congress and local legislators
about important issues facing the myeloma community.
In Connecticut, myeloma support group leaders Michael and Robin
Tuohy participated by giving testimony in a local hearing on SB 50, an
One of our most successful Myeloma Awareness Month activities was a
act concerning oral chemotherapy treatments. In the last few years, we
free four-part teleconference series that highlighted the pillars of the IMF:
have seen dramatic and important advances in treatments for multiple
SUPPORT · EDUCATION · RESEARCH · ADVOCACY.
myeloma. However, the needless disparity in insurance coverage between
I'd like to take this opportunity to thank everyone who participated,
oral drugs and intravenous (i.v.) chemotherapy is a critical issue for many
including Tiffany Richards, MS, ANP, AOCNP, an experienced myeloma
myeloma patients. The IMF believes patients and their doctors should be
nursing specialist at MD Anderson Cancer Center (Houston, TX) and
able to take advantage of the treatment that is best for them, regardless
member of the IMF's Nurse Leadership Board who was the host of the
of how it is administered. What we need is a 21st century system in place
first call of the series covering Support, the members of our IMF Hotline,
to keep up with the innovation. As follow up to this hearing, we're happy
Debbie Birns, Nancy Baxter, Paul Hewitt, and Missy Klepetar, who took
to report that SB50 passed unanimously through the House on May 3rd!
on Education, Dr. Brian Durie, world-recognized myeloma expert
Congratulations to the Michael and Robin for being a part of the solution!
and Chairman of the IMF Board of Directors, who discussed the latest
"Never doubt that a small group of thoughtful,
Research in frontline therapy, and, finally, the IMF Advocacy Team and
our guest panelists Michael & Robin Tuohy and Jerry Walton, who shared
committed citizens can change the world;
their experiences as IMF advocates and discussed the importance of this
indeed, it's the only thing that ever has."
role in the myeloma community. If you didn't get a chance to dial in and
be a part of the discussion, audio recordings of each teleconference are
Margaret Mead, American anthropologist
available on the IMF website www.myeloma.org.
In a similar hearing in the state of New Hampshire, support group leader
In addition to the teleconference series, our advocacy team has been very
and myeloma patient Tom Liebert testified: "Personally, I am in remission
busy expanding our grassroots outreach by hosting training webinars
because of an i.v. drug. An oral version that is currently being developed
for advocates from all around the US. Webinar topics included building
would be more convenient to take. It would eliminate the time and
relationships with your legislators, congressional visits in Washington,
expense required for treatment in a medical center time that keeps
the top 10 DOs and DON'Ts for legislative visits, effective use of the
some patients from going back to work. And it would be less expensive
IMF's Advocacy Action Center, and the IMF's 2010 public policy agenda.
CONTINUES ON PAGE 16
The IMF Advocacy Voice
Get Fired Up! Raise Your Voice! Get Out There and Take Action!
In order to make a change, we must focus our legislators on critical elements
affecting ALL myeloma patients. A personal visit is the MOST effective way to
Based on our "Cancer
communicate your concerns, so take the time to take a stand!
Patient Statement of
Not sure where to start? No worries. Our Advocacy
Principles," the IMF
team will supply you with all the tools you need and
calls on the US Congress
walk you through each step. Email Meghan Buzby
and the White House to:
at mbuzby@myeloma.org for more information
Ensure equality of access for all cancer patients;
or visit us at myeloma.org and click on Advocacy
to learn what you can do to make a difference.
Reform and streamline policies and procedures
for early approval of new cancer treatments;
Sign up NOW for the MYELOMA ACTION
NETWORK to stay informed of critical
Support innovation to develop more effective cancer
treatments; and
issues affecting the myeloma community.
Visit www.advocacy.myeloma.org.
Support research uncovering the causes of cancer.
800-452-CURE(2873)
9
Education & Awareness
IMF PATIENT & FAMILY SEMINAR
A newly diagnosed patient shares her first IMF seminar experience
By Nancy Hol eran Dupont
Itwaswithsometrepidationthatmyhusband
I had received my treatments and stem cell
and I attended our first IMF Patient & Family
transplant in Wisconsin. At lunch, my husband
Seminar in the Fall of 2009. My shocking diagno-
and I shared that we were having difficulty
sis of Stage III multiple myeloma, just 8 months
finding the right place to be seen and treated
prior, followed by chemo and stem cell trans-
in Florida, where we live during the Winter
plant still had me reeling. And so tired!
months. Through much research we'd chosen
a place we thought might meet our needs.
I'd experienced what was thought to be a torn
One of the IMF Hotline counselors listened
muscle in my side in December 2008 and, when
carefully and said that a colleague had the best
the pain didn't resolve, I sought further diagno-
knowledge of physicians and medical facilities
sis. On New Years' Eve we received the call from
dealing with myeloma. That's when we met
my internist: two broken ribs and a compression
IMF's Debbie Birns, one of the IMF staff mem-
fracture to my spine. Although I didn't "exactly"
bers and Hotline Coordinators.
know what that meant, I knew my condition was
grave.
Debbie easily had the recommendations we'd
been searching for the past few months. This
Fortunately, friends told us about the IMF semi-
Nancy Holleran Dupont & Howard Dupont
had been a grueling task at a time when
nar in Minnesota. As a registered nurse, I'd been
research was a daunting for us. She had it at
to many conferences, some more helpful than others. As a patient, could
her fingertips and shared it with professionalism and ease. During the
I get through this one? Would we learn anything? Would my husband
remainder of our time at the IMF seminar, we developed a friendship with
Howard feel the support I hoped he would find among other caregivers?
Deb, a real bonus as she continues to be our resource person.
And finally, was it worth the investment of time and energy, or would stay-
ing home for continued rest be the right decision?
In November, after extensive tests had been done at Moffitt Cancer Center
in Tampa, I got a long list of test results from which all appearances
I must admit I convinced my husband that we must go, that if for no other
seemed to joyously shout "normal!" But I still longed to hear that I was
reason, the networking with other myeloma patients and family members
really in remission. I contacted Deb, who after reviewing the test results
would make the time worthwhile. Thankfully my wish came true.
said, "Yes, Nan, you are IN REMISSION." I just needed another person to
The conference was held in a beautiful
view those lab results and say the
venue, a really lovely hotel. At a time like
"I was very impressed with the concentration of experts at the IMF
magic words we all long to hear.
this, beautiful spaces help to nurture
Patient & Family Seminar. We heard from many speakers and the
Of course there are no guarantees
and support.
information was at all levels. Some of it was a bit complex for a new-
for any of us at any time. Myeloma
comer to the world of myeloma, but it was all backed up with visuals
We were greeted warmly by the staff of
may try to take residence with me
that helped us to absorb the information. Booklets and pamphlets
the IMF. At a time like this, feeling wel-
again, or it may never return. I
were available for us to take home. We learned a lot about my wife's
come provides a healing balm. A good
may encounter other obstacles
myeloma in a short period of time.
start, a good omen.
in my life that are life threatening
It was amazing to me that there was actually a special session held
and as challenging as myeloma.
We learned a lot about myeloma, and
just for family members of myeloma patients. We were included
But I have chosen to live my life
that information came from many sourc-
throughout the conference, but one session was held just for us.
in the most positive way possible.
es. The speakers were innovative, bright
Amazing. I would highly recommend attending a conference, you
Although this outlook on life is
and caring. Did we understand all the
won't be sorry."
not new for me, it has taken on
terms and jargon used? No. But the writ-
Howard Dupont
even greater meaning. I have gar-
ten materials given to us, and the people
nered more points on the "I can
from the IMF who welcomed our questions made it usable information.
overcome" scale through this experience. Yoga, exercise, healthy food,
You see, the people at the IMF understand "us." In some cases, we've
loving and supporting relationships with family and friends, and positive
just been diagnosed with myeloma and we're often still adjusting to the
thought... those are the tools I choose to use to stay well.
diagnosis. Often, our energy levels are at an all-time low. Or, we might
I would highly recommend that other myeloma patients and family mem-
be veterans of the disease, having lots of information through living with
bers consider attending an IMF seminar if they can. And don't hesitate to
myeloma and continuing to learn. Perhaps we've ridden the wave, going
call the IMF Hotline for advice and support, the IMF staff really is there for
from diagnosis to treatment, to re-treatment. At the IMF seminar, there
us. They consider no question a silly one. We're family now.
were patients at many levels, sharing their experiences with treatment,
medical decisions, and ups and downs that accompany. These people
How fortunate we are to have them. MT
are our peers, our new friends, our support network. They are experts in
their own right.
10
www.myeloma.org
Nurse Leadership Board
REPORT ON RECENT NLB ACTIVITIES
Page Bertolotti, RN, BSN, OCN
Myeloma Today in conversation with Joseph D. Tariman
Cedars-Sinai Outpatient Cancer Center
Samuel Oschin Comprehensive Cancer Institute
Joseph D. Tariman, PhC, MN, APRN,BC, OCN
Los Angeles, CA
PhD Candidate
Elizabeth Bilotti, RN, MSN, APRN, BC, OCN
Research Fellow, National Institute of Nursing Research
John Theurer Cancer Center at HUMC
Predoctoral Fellow, Biobehavioral Nursing Research
Multiple Myeloma Division
Fellow, ARCS Foundation
Hackensack, NJ
School of Nursing, University of Washington
Kathleen Colson, RN, BSN, BS
Seattle, Washington USA
Dana-Farber Cancer Institute
Please give our readers an update on NLB activities
How would you assess the value of this textbook?
Boston, MA
at the recent ONS annual meeting.
The book delivers meaningful and comprehensive con-
Deborah Doss, RN, OCN
I was a member of the NLB faculty presenting at the
tent. The major strength of this book is that it has a
Dana-Farber Cancer Institute
ONS 35th Annual Congress, held on May 14, 2010, in
chapter on every aspect of myeloma:
Boston, MA
San Diego, CA. Our presentation encompassed a summa-
· Historical accounts of advances in myeloma
ry of the five core elements of the NLB Survivorship Care
Beth Faiman, MSN, APRN-BC, AOCN
Plan. (In the last issue of Myeloma Today, two team lead-
· Anatomy and Physiology
Cleveland Clinic Taussig Cancer Institute
ers described the work of their task forces. In this issue,
· Pathophysiology
Multiple Myeloma Program
Sandra Rome discusses her section of the Survivorship
Cleveland, OH
· Epidemiology, Prevention, and Detection
Care Plan on page 12.) As myeloma patients are living
Charise Gleason, MSN, NP-BC, AOCNP
longer, in part due to the advent of novel agents, there
· Patient Assessment
Emory University Winship Cancer Institute
is a clear need for a care plan that deals with the issues
· Treatment Modalities
Atlanta, Georgia
on survivorship. The Survivorship Care Plan manuscript
· Newly Diagnosed, Transplant Eligible
Bonnie Jenkins, RN
is currently being prepared for publication, and is being
· Relapsed and/or Refractory
University of Arkansas Medical Sciences
submitted to a peer-reviewed medical journal.
· Patient Management and Evaluation
Little Rock, AR
The NLB presentation was attended by 625 nurses. The
Kathy Lilleby, RN
meeting room was packed, and 75 additional chairs had
· Patient Receiving High-Dose Chemotherapy with SCT
Fred Hutchinson Cancer Research Center
to be brought in to accommodate the crowd. There were
· Patient Receiving Novel Agents
Seattle, WA
an additional 75-100 nurses that, unfortunately, had to
· Patient Teaching
be turned away because we had reached capacity for the
Patricia A. Mangan, APRN, BC
· Survivorship Issues
hall where the presentation was held. Clearly, the atten-
Abramson Cancer Center at the
dance was this high because more and more nurses are
· Nursing Research
University of Pennsylvania
seeing myeloma patients in their practice, and through
· On the Horizon: Future Considerations
Philadelphia, PA
recognition of its contributions to advancing the care of
Emily McCullagh, RN, NP-C, OCN
myeloma patients the NLB has developed a strong fol-
Memorial Sloan-Kettering Cancer Center
lowing. As patients are living longer, it is important for
New York, NY
the nurses who care for them to be up-to-date in their
myeloma education. The NLB members are very com-
Ann McNeill, RN, MSN, APN-C
mitted to the task of disseminating myeloma education
The John Theurer Cancer Center at HUMC
to the nursing community.
Multiple Myeloma Division
Hackensack, New Jersey
You are also publishing a myeloma textbook for
nurses. How did this project originate?
Teresa Miceli, RN, BSN, OCN
(left to right) Beth Faiman, Tiffany Richards,
There has never been a textbook for nurses on multiple
Mayo Clinic Rochester
Joseph Tariman, Elizabeth Bilotti, and Kena Miller
myeloma. I discovered this in the year 2000, when I
Rochester, MN
at the book launch during ONS Congress
was working as nurse practitioner at the Northwestern
Kena C. Miller, RN, MSN, FNP
University Myeloma Program. Almost 10 years later, this
How and where is the textbook available?
Roswell Park Cancer Institute
was still the case. I felt that it was very important for
It is currently available through orders placed with ONS
Buffalo, NY
nurses who work with myeloma patients to have a book
customer service by calling 866-257-4667, and it will
Tiffany Richards, MS, ANP, AOCNP
that would guide them in their practice.
shortly be available through Amazon and Barnes & Noble
MD Anderson Cancer Center
I made a proposal to the Oncology Nursing Society
as well. I would like to reiterate that this is a textbook
Houston, TX
(ONS), which included the conceptualization of the
written in technical language for nursing professionals.
Sandra Rome, RN, MN, AOCN
content. Then I started looking for contributors to work
For publications intended to be read by patients and
Cedars-Sinai Medical Center
on the various book chapters. As a member of the IMF's
caregivers, I would highly recommend the IMF library of
Nurse Leadership Board, I work with some of the best
Los Angeles, CA
free publications, which covers a wide range of topics in
nurses working in myeloma today, and I invited my col-
patient-friendly terms.
Joseph Tariman,
leagues to become contributors to the book. Nine NLB
PhC, MN, APRN,BC, OCN, PhD(c)
members contributed one or two chapters each, and
Any closing comments?
University of Washington
I contributed two chapters. As the textbook's editor, I
Yes, I would like to thank the IMF and Susie Novis in
Seattle, WA
was responsible for the entire content of the publica-
particular for organizing the NLB. Our membership
Jeanne Westphal, RN
tion. It was a lot of work. Given the scope of the book,
has become a very close network that represents the
Meeker County Memorial Hospital
it has been quite an achievement to get it published
best nurses in the field of myeloma, and my colleagues
Litchfield, MN
just one year after my proposal. All the contributors
were invaluable throughout the development of the
worked so hard to make this book timely and relevant to
textbook. MT
oncology nurses.
800-452-CURE(2873)
11
Supportive Care
MOBILITY AND SAFETY IN THE MULTIPLE MYELOMA SURVIVOR
Myeloma Today in conversation with Sandra Rome
The NLB manuscript is being prepared for health
as well as ongoing assessment be performed at every
care professionals. What can you share with the
encounter with the healthcare team.
patients and caregivers who read Myeloma Today?
What are some NLB recommendations regarding
People with myeloma are surviving longer due to
physical activity?
newly available treatment options. Not unlike other
Planned physical activity and/or exercise should be
cancer survivors, long-term myeloma survivors must
part of an overall health program that includes nutri-
deal with issues that include treatment, recovery from
tion, weight management, and potential complemen-
therapies, and the effects of the disease itself. Optimal
tary therapies, such as support groups. All assessments
functioning is key to the quality of life of long-term
prior to an activity or exercise plan should include
myeloma survivors.
patient's previous activities and exercise preferences,
Multiple myeloma causes anemia and bone disease
which may be unique and varied.
in as many as 90% of patients. The impact of the side
There are three types of exercise: aerobic, resistance,
effects at diagnosis and throughout treatment includes
and flexibility. The choice of exercises depends on the
decreased mobility, pain, metabolic disturbances from
person's goals, health status, exercise history, and can-
bone loss, neurological compromises, weakness, and
cer experience. Studies with myeloma patients have
fatigue. Mobility challenges vary among survivors,
Sandra Rome, RN, MN, AOCN
included an aerobic component, usually walking, but
but problems with a lack of mobility or activity affect
Cedars-Sinai Medical Center
in some instances, running or cycling plus strength
quality of life and also may be a hindrance to continu-
Los Angeles, CA
resistance training using exercise stretch bands.
ing treatment.
Activity may improve physical fitness, which may improve physical func-
The purpose of my section of the NLB Survivorship Care Plan is to provide
tioning. Studies have shown the feasibility of exercise in all categories of
the health care professional with information on mobility, fall risk, and
cancer survivors. The benefits of adequate physical functioning and exer-
planned activity as an integral part of the myeloma patient's plan of care.
cise have been shown to have physical as well as psychological benefits.
The intent is to provide tools for nurses and physicians assessing and
Physical activity has been shown to improve cardio-respiratory fitness dur-
evaluating the newly diagnosed myeloma patient, the patient undergoing
ing and after cancer treatment, symptoms and physiologic effects during
treatment, and the long-term survivor.
treatment, and vigor post-treatment.
Patients with myeloma may experience physical changes related to treat-
Positive effects of exercise in cancer patients include improved sleep qual-
ment. Some of these changes include peripheral neuropathy, muscle
ity, mood, overall quality of life, functional and physical measures, as well
wasting, fatigue, and gastrointestinal problems. These, along with other
as a reduction in cancer-related distress and cancer-related symptoms.
patient factors, may interfere with daily mobility, safety, and the ability to
Emotional benefits, such as decreased tension, depression, irritability,
function safely.
pain, and fatigue, and higher levels of invigoration and relaxation have
Myeloma patients have particular risk factors related to falls as compared
been observed with moderate stretching exercise, such as yoga. Exercise
with other individuals 65 years, regardless of their health status. A
may improve treatment completion and possibly reduce toxicity. It may
myeloma patient may have one or more fall risk factors (e.g. visual prob-
help patients with advanced-stage disease improve physical strength and
lems, orthostatic hypotension, gait and balance problems, medication
health, reduce fatigue, and improve emotional status.
side-effects, and degenerative joint disease), so a single factor might not
Exercise intervention studies in myeloma survivors who participate in
necessarily predict a patient's risk for falling. Given the bone problems in
exercise programs show that it can be done safely. Even myeloma patients
myeloma, falls more frequently lead to bone fractures.
undergoing aggressive treatment, such as a stem cell transplant, can safely
What are the recommendations of the NLB regarding mobility?
participate in an individualized strengthening and endurance exercise
program.
We recommend that an evaluation of the patient's baseline history and
physical assessment is performed with a focus on neurologic function,
It is clear that improvement in functional ability, strength, and balance
muscle strength and balance, and visual acuity. Laboratory tests and other
reduces an individual's risk of falling and having a fall-related injury. For
health conditions and medications should be reviewed in terms of the
patients with mobility problems and potential risk of falling, the following
impact on the patient's functioning. MRIs or other imaging studies may
should be specifically addressed:
be indicated prior to prescribing an exercise program. Bone density scans
· Immediate needs for safety (hospital fall-precautions program, in-home
are beneficial for evaluation at diagnosis and annually for guiding the use
assistance, use of assistive devices)
of bisphosphonates, a class of drugs that prevent the loss of bone mass.
· Treat or manage the underlying disorder or problem, e.g. neuropathy
Since a patient's condition can change over time, it is crucial that baseline
CONTINUES ON PAGE 14
12
www.myeloma.org
Supportive Care
IMF HOTLINE COORDINATORS ANSWER YOUR QUESTIONS
The IMF Hotline 800-452-CURE (2873) consistently provides cal ers with the best information about myeloma
in a caring and compassionate manner. The Hotline is staffed by Paul Hewit , Missy Klepetar, Nancy Baxter,
and Debbie Birns. The phone lines are open Monday through Friday, 9am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
I have recently become somewhat
6. The IMF website also features
computer literate and am wonder-
an index of links to other online
ing what information you provide
resources that range from financial
via computer other than your
help to advice for caregivers. This
website?
is available as the last item on the
That is a great question because the
drop-down menu under "Living
International Myeloma Foundation
with Myeloma."
(IMF) is also becoming more computer
Myeloma Listserv
savvy and is able to provide more help
In addition to face-to-face local
via computer to patients regarding all
support groups, the IMF has cre-
aspects of their journey with myeloma.
ated a cyber community of patients
Website
and caregivers in conjunction with
Paul Hewitt, Missy Klepetar, Nancy Baxter, and Debbie Birns
You mentioned that you are familiar with our website, but we'd
the Association of Online Cancer
like to remind everyone what is readily accessible via our website
Resources (ACOR). The listserv helps members communicate quickly and
www.myeloma.org:
easily via e-mail. This incredibly supportive and informative "family" of
1700 participants can be found by clicking on the "Find Support" and
1. A full library of PDF versions of all
then the "Online group" tab. It is easy to sign up for this list by following
IMF publications, including the Patient
the directions on the ACOR link
Handbook, the Concise Review, and all
provided or you can go directly
booklets from the Understanding series.
to http://listserv.myeloma.org.
2. Webcasts from medical meetings held
While the listserv is a wonderful source of all sorts of information, we
by the American Society of Hematology
remind everyone, as always, to verify anything you have read with your
(ASH) and the American Society of
physician and not to follow any suggestions or advice offered that you
Clinical Oncology (ASCO), as well as the
might receive without talking to your doctor.
bi-annual International Myeloma Workshop, and the
Myeloma ManagerTM
IMF Patient & Family Seminars. Just click on the "Webcasts" tab at the top
of the IMF home page and you will get a dropdown menu of all of our
Personal Care AssistantTM
webcasts or go directly to http://webcasts.myeloma.org.
The Myeloma ManagerTM Personal
Care AssistantTM (MMPCA) is a soft-
3. The publications of the International Myeloma Working Group (IMWG)
ware program designed specifically for patients and
are also on our website. There are over 30 IMWG publications, with
caregivers battling multiple myeloma. It was developed
subjects ranging from diagnostic criteria to response criteria. These can
by the IMF to help patients and caregivers deal with the glut of information
be found under the "Research" tab and then under "Myeloma Working
and constantly increasing complexity of myeloma treatment programs. The
Group." In addition to the full papers, we have begun to create summary
program runs on your computer and stores all personal data on your com-
guidelines of each of these papers, which are also listed on that page.
puter. None of your data is transmitted to anyone. Access to the Myeloma
4. The links to clinical trials and clinical trial search tools are constantly
Manager is password-protected and the data is encrypted (scrambled) so
being updated on the IMF website, and these are a good way to find rel-
that it cannot be accessed from outside of the Myeloma Manager.
evant clinical trials. Just click on "Clinical Trials" on our website.
At its core, the Myeloma Manager provides a tool to capture laboratory
5. Our support group directory can help you find a group in your area.
results and display and print tables and charts to show how those results
Just click on "Find Support" and you will go to http://support.myeloma.
change over time. Other features include automatic backup of your data
org page. Myeloma support groups in the US are listed by state, and
each time you shut down the program, calendars, and graph features
international groups are listed by region and country. Some of the
such as plotting multiple tests on one graph and time-scaled graphs. The
groups have their own websites that feature specific details on their
software also includes real-time news feeds from the IMF website and a
activities and upcoming meetings, and those links can be found in the
reference shelf, with links to useful publications and web pages.
group descriptions.
CONTINUES ON PAGE 14
800-452-CURE(2873)
13
Supportive Care
SANDRA ROME / MOBILITY & SAFETY -- continued from page 12
· Adjust medications
In any setting, the immediate need for patient safety (e.g. prevention of
· Recommend an exercise program that includes training in gait
falling) should be the priority, and the patient's environment should be
and balance, and stretching
assessed and modified to maximize safe mobility (e.g. rug placement,
handrails, and grab bars).
· Assessment and modification of daily routines
· Safety of home environment
What about ongoing assessment and readjustment?
Cancer rehabilitation is seldom linear; myeloma survivors may have var-
What precautions should be considered?
ied problems and symptoms over time, such as pain, neuropathies, etc.
Patients need to be educated as to when they need to modify or abstain
Ongoing patient assessment of risk of falling, physical activity, medica-
from their exercise regimen. For example, when they have a fever, patients
tions and their side-effects, laboratory and diagnostic tests, nutrition, and
should avoid group participation; if they have low platelets, a greater
adequate management of other health issues is essential.
concern for strenuous activity and maintaining security of balance needs
to be emphasized. Patients with balance problems may need to use a chair
Maintaining a weekly exercise log helps patients track the frequency,
or wall for balance.
intensity, and duration of the exercises they perform. Based on patients'
documented exercise performance, programs could be altered to best
Patients must be cautioned to listen to their own bodies and abstain from
accommodate their physical functioning (e.g. if the patient is feeling very
activities that cause discomfort. Clinicians should recommend safe activity
fatigued the intensity of the exercises can be lowered accordingly).
as part of the plan of care for every patient. On the one hand, a patient
Any closing comments?
who had been active previously may not want to adhere to restrictions
such as calling for help or using a walker. On the other, a sedentary indi-
Whatever is recommended or endorsed as exercise or activity needs to
vidual may not understand the importance of exercise on bone health.
be carefully evaluated by the patient's healthcare providers. Patients and
Safe mobility and physical activity programs need to be tailored to the
their family members should be instructed to tailor the patient's activities
needs of each individual patient.
based on daily health status and communicate with the healthcare team
regarding any questions or concerns they might have. MT
IMF HOTLINE -- continued from page 13
At this time, the Myeloma Manager is available for Windows computers
we have the capacity to hold virtual meetings between two people who
running XP, Vista, or Windows 7. It is not yet available for Macintosh,
are logged on to their computers. This is a tool that has come in handy
although it can be run on a "dual boot" Mac running Windows.
for our webmaster, Abbie Rich, as she assists support groups in building
their own websites.
You can find the Myeloma Manager on the IMF website and down-
load the program by either clicking on "Living with Myeloma"
Miscellaneous resources
and then going to Myeloma Manager or going directly to the link
The are a lot of other computer-based resources and services that you
http://manager.myeloma.org.
might find useful. For example, the CaringBridge website at www.
Personal Memory Stick
CaringBridge.org allows patients or their caregivers to create a free
personalized website to connect family and friends. These personalized
In an ideal world, every person would create, update, and
websites are private and accessible 24 hours a day and can greatly ease the
carry around a small memory drive on which the store their health
burden of keeping family and friends up-to-date with a patient's progress.
history, medications, and current year's laboratory data. Some institutions
For example, if someone is having a stem cell transplant or is hospitalized
like the Kaiser system in California, which has fully implemented elec-
for some other reason, the author can provide health updates and even
tronic medical records, make these small memory sticks and all laboratory
photos to share their story. Visitors to the CaringBridge webpages can
results available to their patients. Storing and carrying your medical data
leave messages of love and support in the guestbook for the patient and
on a memory stick is a safe and reliable way to share medical information
family.
when visiting different doctors who need to know your medical history,
Finally, we want to remind everyone that while computers are great, there
what medications and dosages you're taking, and what your current lab
is sometimes nothing better than a live human being at the end of the
values are. If you already have all this information stored in your computer
phone. So don't forget about the IMF Hotline, even if you just need help
on your Myeloma Manager, it is a small step to transfer all the information
finding something on our website. MT
on that program to a memory stick and carry it with you in your pocket,
ready to share with your doctor.
Need telephone help fast?
Webinars
Go to the web, click to talk.
A "webinar" is a web-based seminar. The IMF's first webinar was a training
Check out the new instant Hotline telephone
session for people interested in learning about the Myeloma Manager.
access. Go to the IMF website and click on this icon
Look for more webinars from the IMF in the future. On a smaller scale,
in the upper right corner...and we'll give you a call.
14
www.myeloma.org
Support Groups
PEOPLE HELPING PEOPLE
You are never alone in your bat le against myeloma
Central Florida Multiple Myeloma
and a great way to close out the
Support Group Takes Action
Central Florida Multiple Myeloma
To celebrate the 2010 Myeloma Awareness Month, the Central Florida
Support Group's activities for the
Multiple Myeloma Support Group members decided to organize a series
2010 Myeloma Awareness Month.
of events.
Editor's Note: The Central Florida
Multiple Myeloma Support Group
meets on the second Monday of
each month from 6 p.m. to 8 p.m.
in the Asbury Methodist Church in
Maitland, FL. For more informa-
tion, please contact Ken Fabian at
kenfabian011107@yahoo.com or
407-928-2808, or Dick Wells at
richard.wel s@celebration.fl.us or
321-939-2594.
(left to right, standing) John Kearney, Robin Kearney, Roy Leader,
Janet Leader, Kelly Bodiford, Lureen Keyser, Patricia Wells, Richard Wells,
Primera Reunión del Grupo de Soporte
Charles Cain, Barbara Cain, Monica Chill, Arlene McCutcheon,
de Mieloma Los Angeles (en español)
Victor Alas, Ishwar Khamare, and Alpesh Patel.
(left to right, seated) Ken Fabian Uma Khamare, Lois Sain, and Julius Sain.
The inaugural Los Angeles Spanish-language Myeloma Support Group
Meeting was held on May 1, 2010. We believe that this is the first such
On March 13, support group members Uma Khamare, Lureen Keyser,
group in the US. If you know a myeloma patient and/or family that
and Ken Fabian, along with SCC nursing student and volunteer, Arlene
would benefit from this group, please give them this article or they can
McCutcheon, set up a booth at the Winter Park Farmers Market to provide
call Betty Arévalo at 818-487-7455, ext. 242 in Spanish. The next meeting
myeloma information and to pro-
of this group is scheduled to take place on Saturday, July 10, 2010 from
mote awareness. Several patients
10am to Noon in the Conference Room of the IMF offices located at 12650
and others whose lives have been
Riverside Drive, Suite 206, North Hollywood, California.
touched by myeloma stopped at the
booth to share their experiences
Myeloma Today tiene el placer de notificar a nuestros lectores de la
and offer support. Many friendly
lengua hispana que la IMF se celebró la reunión inaugural del Grupo de
people who had never heard of the
Soporte de Mieloma Los Angeles en español el día primero de mayo
disease came by to chat and pick
del año en curso en el salón ejecutivo del hotel Sheraton Universal.
up copies of IMF publications that
Estuvieron presentes varias personas de la plantilla de la IMF para apoyar
were distributed at the booth. A
a miembros de dos familias hispanas afectadas por el mieloma múltiple.
Lureen Keyser, Arlene McCutcheon, local news crew interviewed Arlene
Aunque la comunidad hispana en los EE UU sufre del mieloma en cifras
and Uma Khamare promoting
McCutcheon and the segment
similares de incidencia a la población anglosajona, hasta la fecha, no haya
myeloma awareness.
appeared on the evening news. All
existido ningún grupo de soporte de mieloma realizado únicamente en
in all, this was such a rewarding experience for the support group that a
español en los Estados Unidos.
plan is in the works to repeat this event annually.
(Nota: ¡si estamos equivocados, les rogamos a nuestros amables lectores
The following weekend, group members gathered at the Sanford Farmers
de actualizarnos, por favor!)
Market to pass out IMF literature. Arlene and Kelly Bodiford volunteered
Los hispanos en los EE UU con mieloma y sus familias luchan contra
for a special event with the Seminole State College Student Nurses
las mismas dificultades y padecen de las mismas necesidades que los
Association, which hosted a National Bone Marrow Donor registry. Arlene
anglosajones. Las familias presentes el primero de mayo se levantaron
and Kelly successfully registered 171 new prospective donors!
varias preguntas sobre los tratamientos actuales y anteriores, los efectos
One week later, on March
secundarios de ellos, la posibilidad de conseguir una segunda opinión, los
27, support group members
seguros médicos, la duración probable de la remisión y las opciones en el
organized a Car Wash and
caso de recaída en el transcurso de la mañana. Suenan como los tópicos
Bake Sale. The weather was
típicos de cualquier grupo de soporte, ¿verdad?
beautiful, and everyone who
Con un vistazo rápido del equipo IMF presente en la foto adjunta, se
participated had a great time.
nota que hay apoyo por parte de la IMF para lograr el éxito del grupo.
Many friends and support-
Pero hay que señalar el trabajo determinado de una enfermera y miembro
ers showed up to wash cars, hold up signs, or sell a variety of delicious
de la plantilla de la IMF, la Sra. Mirna (Betty) Arévalo, por la planeación
baked goods. The Car Wash and Bake Sale events were a huge success
CONTINUES ON PAGE 16
800-452-CURE(2873)
15
Support Groups
PEOPLE HELPING PEOPLE -- continued from page 15
La siguiente reunión del Grupo de Soporte de Mieloma Los Angeles en
español se llevará a cabo el día sábado, 10 de julio, de las 12:00 a 2:00 p.m.
en la Sala de Conferencias de las oficinas de la IMF. La dirección es: 12650
Riverside Drive, suite 206 (2do Piso) North Hollywood, California. Para
más información, llame por favor a Betty Arévalo al 818-487-7455, exten-
sión 242 o por email a: marevalo@myeloma.org.
2010 IMF Annual
Betty Arevalo, Mr. & Mrs. Lorenzo Garcia, Noemi Fuentes and
Support Group Leaders' Summit
her daughter Vanessa, Selma Plascencia, David Girard, Debbie Birns
This year's Support Group Leaders' Summit will commence at 1 p.m.
de la reunión y sus esfuerzos de comunicación con las familias hispanas
on July 23rd at the beautiful Four Seasons Resort & Club, Dallas at Las
de el área metropolitana de Los Angeles. La IMF dice que la educación
Colinas, in Irving, TX. The retreat will conclude at noon on July 25th.
de solamente una persona en una reunión hace exitosa el evento con
Alan Kumomoto will once again serve as facilitator. We are confident that
un comienzo pequeño pero sincero y la divulgación de la existencia
everyone who attends the summit will take away lots of helpful informa-
del grupo en la comunidad, se puede lograr educar a más que una sola
tion to bring back to their group to make it even better! MT
persona, mucho más.
ADVOCACY -- continued from page 9
to administer. Yet most insurance plans would require us to pay so much
Pakman put it best, when he said, "An update of current laws is necessary
more out-of-pocket, that the oral drug would not be affordable for the
to prevent inequalities to deny access to treatments that the medical and
patient." Because of Tom's efforts, the state of New Hampshire is setting
research communities struggle to bring to cancer patients."
up a panel to explore the issue further and, hopefully, move forward with
a bill next year. This is another prime example of how patients really are
IN WASHINGTON:
making a difference. Way to go, Tom!
Support Group Leaders go to Capitol Hill
The IMF has helped facilitate meetings in Washington, DC with members
The IMF Advocacy Team would also like to thank... Carol Klein, wife and
of Congress for patients and support group members to voice issues
caregiver for IMF board member Benson Klein for participating in the hear-
of concern to the myeloma community. These issues include oral-drug
ing in Maryland... Caethe Goetz, support group leader from California for
reimbursement parity, funding for blood cancer research, and support
giving testimony in the hearing on SB 961... and Dr. Marcelo Pakman,
for the 21st Century Cancer ALERT (Access to Life-Saving Early detection,
myeloma patient from Massachusetts, for submitting written testimony in
Research and Treatment) Act (S. 717).
support of SB 2271, An Act Relative to Oral Cancer Therapy. I think Dr.
MT
Jerry Walton, Support Group
blood cancer research initiative in the Congressionally Directed Medical
Leader, Southeastern VA, met with
Research Program (CDMRP) at the DoD.
Representative Glenn Nye (D-VA-2)
In Jack's meeting with the staff of Senator Barbara Boxer (D-CA), one
to talk about the issue of access to
of his requests was for the senator to become a cosponsor of the 21st
treatment, and more specifically,
Century Cancer ALERT, which was introduced by the late Senator
HR 2366-which was introduced by
Edward Kennedy (D-MA) and Senator Kay Bailey Hutchison (R-TX). This
Representative Brian Higgins (D-NY-27), and would end the disparity
is an important piece of legislation that would require the Secretary of
in insurance coverage between oral and IV treatments. Jerry highlighted
Health and Human Services to award grants for research on rare cancers
the fact that this is a critical piece of legislation for myeloma patients
and cancers with a low five-year survival rate, which would include
since there's a very good chance at some point in treatment, patients
myeloma. It also provides procedures for the National Cancer Institute
will have to use both therapies.
to advance new technologies in cancer
Jack Aiello (left), Support Group Leader,
research, support tissue collection for can-
Bay Area, CA and
cer research, and clarifies issues governing
Marti Hill (right),
clinical trials, including ethical and privacy
Support Group Leader, Tampa, FL focused
standards.
their meetings primarily on funding for
research. Since Marti's Representative,
The IMF would like to thank Jerry, Jack, and
Bill Young, is a member of the House
Marti for their time, diligence, and dedication to the myeloma commu-
Appropriations Committee, but more importantly, Ranking Member of
nity. Patients like you set such high standards for the rest of us!
the Department of Defense (DoD) Appropriations Subcommittee she
Editor's Note: Please visit the IMF action center at advocacy.myeloma.org
spoke with Representative Young's staff about the need for establishing a
and become a part of the solution.
16
www.myeloma.org
International Affiliates
UPDATES FROM AROUND THE GLOBE
Australia: National Myeloma Day
disease, 40,000 copies of a
The inaugural National Myeloma Day in Australia was held on May 19,
new diagnostic tool devel-
2010. Celebrated across Australia with 12 patient and family events and
oped specifically for use
two myeloma education sessions for clinicians in general practice, the
within the Australian health
National Myeloma Day was an unqualified success. Organized by the
care system were circulated
Leukaemia Foundation Austalia, this special day aimed to achieve three
in two publications for medi-
things:
cal professionals. The aim of
the tool is to encourage clini-
· increasing myeloma awareness among clinicians to support
cians to consider myeloma as
its diagnosis,
a diagnosis when generalized Dr. Mathew Wright during his presentation
· promoting myeloma awareness among the general public, and
symptoms occur, so that the at the patient and family seminar in Perth
· celebrating achievements including early access to novel treatments
patients can then be referred
Western Australia
in Australia
to a specialist treatment center. In addition, an awareness survey was also
conducted of myeloma and its impact in the wider community.
Patient groups and health professionals in Australia have recognized that
diagnosing myeloma can be difficult due to a limited awareness of the
In a significant step forward, in the last 12 months, myeloma patients
condition and its general unspe-
in Australia were granted earlier access to various drugs used to treat
cific symptoms. Symptoms of
myeloma through the Pharmaceutical Benefits Scheme (PBS) system. Early
the disease can be mistaken
access to novel therapies can potentially improve the outcome for many
for other conditions, poten-
myeloma patients in Australia.
tially delaying correct diagno-
Myeloma is the second most common blood cancer in Australia. It
sis and prompt treatment, and
accounts for around 15% of all blood cancers in the country, and the inci-
clinicians who encounter few
dence of myeloma is growing at the fastest rate of all the blood cancers.
myeloma patients during their
Around 1,500 new cases will be diagnosed in Australia this year. MT
career may have limited aware-
Kaye Hose and Jasmine Latash of the
ness of the condition. To pro-
Editor's Note: For more information, please contact Kaye Hose at
Leukaemia Foundation Australia with
Dr. Silvia Ling, a recipient of the 2008
mote myeloma awareness and
myeloma@leukaemia.org.au. To locate a myeloma support group in
IMF Brian D. Novis Research Grant
improve the diagnosis of the
Australia, please visit the IMF website and click on the "find support" tab.
We speak
your language
The IMF publishes a comprehensive
library of informative myeloma resources.
Used by patients, caregivers, healthcare
professionals, and anyone needing a
reliable source of up-to-date information
regarding the disease, these publications
are critical to a better understanding
of myeloma.
800-452-CURE(2873)
17
Investing in the Future
MYELOMA TODAY IN CONVERSATION WITH ALLAN WEINSTEIN
"Investing in the Future" features profiles of IMF members who are making substantial investments in the
myeloma community and the path to a cure. We hope that the stories of how and why these individuals
have chosen to commit so significantly to the fight against myeloma wil inspire you, as they inspire us.
Please share with our readers your history with
Why have you chosen to invest in the IMF and its
myeloma.
programs?
I was diagnosed in 2002 as a result of a recurring infec-
There is a direct connection between my disease and my
tion. I felt fine but laboratory tests showed an elevated IgG
support for the organization that does so much for so
level. Further testing found a bone lesion in my sacrum. My
many people in the myeloma community. I like the fact
myeloma was (and remains) mostly asymptomatic. I was
that the IMF is so patient-centric. Given that myeloma
treated with three rounds of VAD, then three rounds of tha-
is as yet incurable, addressing the needs of the patients
lidomide plus dexamethasone. In July 2003 I had an autolo-
is extremely important. In some cancers, if you make it
gous stem cell transplant. After that I was on a thalidomide
through the first five years, you know you'll probably be
maintenance program and, up until last year, my myeloma
alright. That's not the case with myeloma. Nearly every-
was stable, except for a vertebral fracture about two and a
one relapses eventually. So there is a constant patient
half years ago. A year ago, my IgG numbers started going
need for the work that the IMF does on that front. The
up and my peripheral neuropathy was getting worse. At that
Hotline, as well as the seminars and community work-
point, I decided to switch to lenalidomide (Revlimid®) and
shops do a great job at providing information to the
we've been doing a gradual dose escalation, from 5 mg to
patient and caregiver, and this is extremely important.
10 mg to 25 mg about a month ago. I have not attained the
Obviously, I'd like to see a cure for myeloma found, the
desired response, so I am moving on to other treatment
Allan Weinstein
Member, IMF Board of Directors
"silver bullet," and I'm encouraged by the research being
options. But I still feel fine.
done in the field. The IMF has a big role in this and we
Please tell us about your history with the IMF.
have seen some very promising results in recent years. But the commitment to
After I was diagnosed, I started to research myeloma online and found the
finding a cure is likely a long-term one. In the meantime, the IMF has a large
IMF. I attended the very next IMF Patient & Family Seminar and have contin-
number of doctors who are committed to the organization. Their collaborative
ued attending IMF meetings, which offer excellent educational value. In 2009,
work has produced many important publications and guidelines, as well as
I was a presenter at the Patient & Family Seminar in San Francisco my ses-
treatment advice that is very helpful to keeping the disease under control for
sion aimed to help patients and caregivers understand scientific literature. I'm
as long as possible for those who are living with myeloma today.
looking forward to being a presenter again at seminars this year.
In a way, finding financial support for research projects is easier than getting
When the IMF launched its Bank On A Cure® research initiative, I was asked
support for patient programs, because we all want to wake up tomorrow to
to join its management committee because of my background. I am retired,
the news that a cure for myeloma has been found. This is such a strong motiva-
but had been a professor of Bioengineering and Orthopaedic Surgery and
tor, but unlikely to happen overnight. We must not only look into the future
ran a research department at Tulane University, then I ran a company in the
but also support today's patients. While we are searching for a cure, we can't
orthopaedics area and another company involved in spinal disc prostheses.
ignore the needs of those who are being diagnosed and those who are living
Because of my background in bone replacement materials and devices, I have
with the disease. The IMF strikes a good balance patient services and progres-
a thorough understanding of the bone aspect of myeloma.
sive research. This is a major strength of the organization.
When I was invited to join the IMF Board of Directors, I was happy to do so.
I would love to see the day when the cure is found and the IMF is no longer
Currently, I am Chairman of the Finance Committee and I also serve on the
needed. But most cancers don't have a "silver bullet" cure, and patients
Executive Committee. The Finance Committee prepares the annual budget,
still need to be well-informed about their disease in order to make the best
provides financial oversight to the Board, and conducts a monthly review of
decisions in selecting among the available treatment options. It is because I
the financial performance of the organization. The Executive Committee is
believe in the work that the IMF is doing that I want to help the organization
charged with acting in place of the Board if an emergency decision needs to be
in every way I can, including making an annual contribution to support its
made before the full Board can be convened frankly, I don't even remember
programs and services. MT
the last time this happened.
In 2009, Mr. Weinstein was a presenter at the IMF Patient & Family Seminar in San Francisco
18
www.myeloma.org
Patient & Caregiver Experience
BOLT FROM THE BLUE
By Charty Bassett
Thesorehipseemedlikejustanotherone
As I write this I am finishing cycle three
of those aggravating aches and pains that
of chemo, and have just begun consulting
come with "getting older." At age 60, newly
with doctors at the UC San Diego Moores
retired and in seemingly good health, I had
Cancer Center regarding a possible stem cell
recently moved with my husband Brant from
transplant. I feel that we have the best of all
the East Coast to San Diego County where he
worlds in medical care: an excellent oncolo-
was born and raised. The heavenly climate, a
gist/hematologist well versed in myeloma,
garden that churned out fruits and vegetables
in an office that is small, close to home and
every month of the year, and endless oppor-
with friendly and highly competent nurses
tunities for hiking, biking and swimming in
and office managers. Our oncologist com-
gorgeous mountain, desert, and oceanside
municates directly with doctors at UCSD,
settings how could one help but be healthy?
making my transition to a possible stem
Yet this sore hip, starting in November 2009,
cell transplant smooth and seamless. In the
would not go away. Physical therapy didn't
meantime, we have had wonderful support
solve it, so in late February 2010 (two months
from the IMF the initial information packet
ago as I write this) I went to an orthopedist,
Charty Bassett and her husband Brant
which was promptly mailed to us gave us a
who ordered an MRI.
wealth of material to get us started on this
steep learning curve. The counsel I have gotten from the IMF Hotline has
That same afternoon the orthopedist called and informed me that the MRI
been outstanding everything from handholding and encouragement
showed bone lesions and "a destructive mass on the acetabulum." This is
to medical pointers and answers to very specific technical questions.
difficult information to process, even apart from the fact that I had never
We are planning to travel to the next IMF Patient & Family Seminar, and
heard of an acetabulum. The phone call dropped my husband and me
look forward to getting more involved in San Diego's active myeloma
into what felt like another dimension a time which has been to date the
support group.
darkest and most difficult period of dealing with this disease. Something
was radically wrong, clearly life-threatening, yet it had no name and
In addition to first-rate, multi-faceted medical support, we are blessed
we knew nothing specific. No label was given, no indication of what to
with an extraordinary circle of family and friends who have reached out
expect. Whom should we tell about this? What to say to our kids? We were
to us with encouragement, help and love that have sustained us and kept
stricken fearful, confused, and completely at a loss.
our spirits up day by day a true lifeline for me. This web of caring that
has materialized around us is a profound reminder that we are not alone
The following day we met with our primary physician, who gave us more
on this journey. Because we are recent transplants to Southern California
details on the MRI results, and expressed the hope that what I had was
and our family and friends are so widely scattered, we have found keep-
multiple myeloma. This also took us aback; what kind of "hope" is this?
ing a blog an ideal way of keeping everyone informed of our medical
(and what IS multiple myeloma, anyway?)
developments. (For us, the CaringBridge website www.caringbridge.org
He told us that myeloma is a disease of the plasma, and that it is "emi-
has proven to be a wonderful vehicle for communication.)
nently treatable" a phrase which I seized upon as the one positive little
I never would have chosen to come down with myeloma. I realize that the
straw floating in an ocean of dark unknowns.
road ahead will be difficult. Yet these last two months since my diagnosis
This bleak period of uncertainty and fear, which at the time felt like an
have been a time of lessons, gifts and silver linings. The unwanted turn of
eternity, was in fact only two days. Our primary physician called us with
events has caused me to cross paths with some remarkable people I other-
the results of my blood test, which showed an IgA protein spike of 2400.
wise would have never encountered. It has reminded me of the value and
He said he was 90% sure it was myeloma, but that he would set me up with
real power of love and friendship and of how much I cherish my family
an oncologist for an initial consultation and official diagnosis.
and friends. It has tied me even closer to my husband, who is alongside
me at each step of the way. It has brought into focus just how fragile and
It is strange how liberating and empowering a bit of knowledge can be.
how very precious life is, and has enabled me even forced me to live
Suddenly we had a name for what was happening. We could do research.
and relish one day at a time.
We were going to confer with doctors who know these issues. We were
no longer helpless and bewildered. We immediately began notifying our
I am very much a novice on this strange myeloma journey. Yet I have every
children, our family, our friends a difficult and uncomfortable process.
hope to in time become, like so many who have written on these pages,
On the medical front, the pace picked up. Within days we met with our
a long-term veteran who can impart expertise, wisdom and even hope to
oncologist, who impressed us as extremely knowledgeable, accessible
those who are suddenly facing the challenge of multiple myeloma. MT
and pro-active. He scheduled a bone marrow aspiration and biopsy for
that same day, with radiation to my hip and chemo treatment to begin the
following week.
800-452-CURE(2873)
19
Member Events
IMF MEMBERS RAISE FUNDS TO BENEFIT MYELOMA COMMUNITY
By Suzanne Battaglia
In 2010, the IMF is proud to mark its 20-year anni-
Grayson was battling
versary of service to the myeloma community. Our
myeloma, and he has
strength is in our members a network of people like
continued that sup-
you from across the country and around the globe.
port in Lee's memory.
IMFers are raising money for myeloma research and
Playing in the 2010
educational programs that have an impact on the
semi-finals
brings
lives of patients and family members worldwide.
$100,000 to the chari-
Being involved is very fulfilling and empowering. Join
ties represented by
us in our search for a cure for myeloma. By organiz-
the celebrity com-
ing an event in your community, you are also raising
petitors who do not win the big MILLION DOLLAR PRIZE -- the largest
public awareness and helping those whose lives have been touched by
amount ever awarded on "Celebrity Jeopardy!"
this disease. You want to do something in your community, but deciding
Michael successfully competed in his semi-final round against actor
on what to do and how to do it can be confusing. That's where we come
Charles Shaughnessy (AMC's "Mad Men" and "The Nanny") and fashion
in! The IMF's Fundraising program is here to help you every step of the
designer Isaac Mizrahi on May 4, 2010. The semi-final win qualified him
way. We make it as easy as possible for you to be involved, whether or not
to play in the two-show final round on May 6 and 7.
you have any previous experience with such activities.
"Because of the money at stake, the material for this year's Celebrity
FUNdraising is fun and easy to do, and brings with it the satis faction
Invitational Tournament was more difficult than our normal celeb-
of knowing that YOU have made a difference in many lives. We are
rity fare," said "Jeopardy!" host Alex Trebek. "I thought all three finalists,
grateful to all IMFers who contribute their time, imagination, and hard
Michael McKean, Jane Curtin and Cheech Marin, proved that they were
work to benefit the myeloma community. Our FUNdraising pro gram
up to this challenging material. Michael, in particular, was strong in all
provides you with the tools, assistance, and expertise to make your
categories, and the IMF was lucky to have him represent them in the
event a success. Choose an established event model or create your own
competition."
no idea is too large or too small. Join us in working together toward
our common goal... a CURE. Please contact me, Suzanne Battaglia, at
After the two-day final, Michael remained undefeated as the "smartest
sbattaglia@myeloma.org or 800-452-CURE (2873). I am here to
man in Hollywood" as he won the top prize on the "Jeopardy!" Million
chat with you about any ideas you might have. Be part of making
Dollar Celebrity Invitational Tournament. This is the largest single
miracles happen!
donation the IMF has ever received, and this is the first time "Jeopardy!"
has ever awarded one million dollars in a celebrity tournament.
Here is a sampling of past and upcoming events...
McKean's triumph creates the largest single
"This is an amazing and overwhelming moment for the IMF," said Susie
donation ever for the IMF
Novis, IMF president and co-founder, as she received a check for one
million dollars from the producers of "Jeopardy!" The money is ear-
Grammy Award winner, Academy Award nominee, Michael McKean is a
marked to create the McKean/Grayson Fund in honor of Michael McKean
multi-talented actor, singer, writer and director who is associated with
and in memory of his friend Lee Grayson. "The International Myeloma
some of pop culture's most iconographic film and television shows of
Foundation continues its tireless fight regardless of who's helping foot
the last three decades. He has appeared in hundreds of movies and TV
the bill," said Michael McKean. "I'm glad I was able to kick in my share."
shows. He is best known for creating memorable characters such as
"Lenny" in "Laverne & Shirley" and lead singer/guitarist/songwriter in
Susie added, "A million dollars will do so much to help the myeloma
the classic motion picture "This is Spinal
community, by empowering patients and their families through education
Tap." Most recently, Michael performed
and offering them realistic hope for a brighter future through research.
on Broadway in Tracy Letts' new play
Michael McKean and our new friends at `Jeopardy!' have helped us beyond
"Superior Donuts."
words, and touched the lives of people around the world."
The IMF waited with great anticipation
The IMF plans to use the exceptionally generous winnings to fund
as Michael entered the semi-final round
research to find a cure for myeloma, and to help patients and their families
of the "Jeopardy!" Million Dollar
through education, because informed patients do better medically and
Celebrity Invitational Tournament on
emotionally. Susie concluded, "Thanks to Michael McKean and everyone
behalf of the Foundation. He had already
at `Jeopardy!' we have the resources to empower patients and help change
won $50,000 for the IMF in the quarter-
the lives of people all over the world!"
final round in October 2009. Michael
Editor's Note: Video of the winning moment can be found at
began supporting the IMF when his
http://www.jeopardy.com/minisites/celebrityjeopardy/.
good friend and fellow guitar player Lee
20
www.myeloma.org
Member Events
Fishing For A Cure
including a Ray Lewis jersey and a weekend getaway. We also gave away
By JoAnne Gunther
72 door prizes. It was great fun for everyone a truly memorable evening
and people continue to inquire if we will hold another event next year!
On April 10, 2010, I hosted Fishing For
A Cure, an event organized to honor the
Bill lived a life of faith with hope that someday a cure for myeloma would
memory of my husband. Bill's myeloma
be found, and I pray that the nearly $14,000 we raised will help other
diagnosis in 2001 was devastating to us.
myeloma patients and fam-
We lived on an emotional roller coaster,
ily members see the day that
with much uncertainty and great appre-
this disease becomes curable.
hension. Then we found the IMF and
Holding this event has been
gained the knowledge we needed to feel
an inspirational experience
more in control of our lives.
and a gigantic step in helping
me to reconcile my grief. I
Throughout the eight years we fought
Bill Gunther and Huey.
now truly comprehend how
Bill's disease together including transplants, chemotherapy, and blood
in giving we receive. MT
Conga line
transfusions the IMF was an important part of our lives. My background
as an operating room nurse helped me process a lot of the new informa-
tion about Bill's myeloma and we made the most of our situation, faced
UPCOMING MEMBER EVENTS
the challenges head on, and tried to remain upbeat.
August 22, 2010 "On The Fritz" theatre party
El Portal Theatre North Hollywood, CA
It was a difficult journey for both of us. Despite the challenges, Bill would
Contact 866-811-4111 and use "Fritz" promotional code
try to befriend and comfort other patients at the clinic of the University
October 3, 2010 "Afternoon Tea" Four Seasons Hotel Washington, DC
For information and reservations, please contact Carol Klein
of Maryland Medical Center and try to put them at ease with his kind
at carol60klein@verizon.net
and compassionate nature. During Bill's last hospitalization, I promised
October 10, 2010 Coach Rob's Benefit Bash Apopka, FL
him that I would turn the pain we experienced into something positive
For information and reservations, please contact Rob Bradford
and meaningful.
at rbradford@crothall.com
October 11, 2010 Coach Rob's Charity Golf Tournament Apopka, FL
After I lost my wonderful husband and soulmate of 43 years, it meant
For information and reservations, please contact Rob Bradford
everything to me to fulfill my promise. Through the guidance of Dr. Robert
at rbradford@crothall.com
Kyle of the Mayo Clinic, I contacted IMF's Suzanne Battaglia. She offered
November 6, 2010 "Misbehave for Myeloma" Harry Caray's Wrigleyville, IL
Contact Alexandra Zousmer at aezous@gmail.com
much encouragement and support as I organized my first fundraiser.
My son, Bill Gunther III, was a huge help in
overseeing the details of the event. I was also
sustained and uplifted by the generosity not
only of family and friends but even complete
strangers. All the support I received gave me the
courage to continue to move forward to fulfill
my promise to Bill.
Bill Gunther III
The night of the event was awesome!
Positive energy filled the room that held a capacity crowd of 235
guests. The nurses who cared for Bill
Put your old cell phone to good use!
throughout his illness showed up
Donate your old cell phone and become part of finding the cure. The
for the event, as did his oncologist
IMF has partnered with a cell phone recycling organization that makes a
Dr. Ashraf Badros, who moved everyone
donation for every cell phone we turn in. Current cell phone models are
when he shared his memories of Bill.
worth up to $20 each. Many older models are worth $1 to $10.
The event was called Fishing For A Cure
You can help the IMF continue its research and programs. You can help
because my husband was a commercial
our environment. You can provide cell phones to underserved com-
fisherman and fulfilled his passion for Dr. Badros and JoAnne Gunther
munities. And it's as easy as sending us your old cell phones. For more
the outdoors by making a living harvesting sea-
information about how to turn your old cell phone into a contribution
food. But the event I hosted was actually a Bull
(or how to set up an IMF collection program at your business or school),
call Kemo Lee at at 800-452-CURE (2873).
Roast, a typical social function in the DelMarVa
area where I live. We cooked beef over a pit
Or, you can mail your phones direct to the IMF:
and served it buffet-style along with a wide
International Myeloma Foundation
variety of other dishes. We had a DJ playing
c /o Cell Phones for a Cure
music all evening, and there was lots of danc-
12650 Riverside Drive, Suite 206 · North Hollywood, CA 91607-3421
ing. We raffled off 35 gift baskets of donated
The IMF thanks Binding Site for becoming the first corporate sponsor
items. In addition, we had big-ticket items,
It's dinner time!
of the IMF Cell Phones For A Cure program
800-452-CURE(2873)
21
International Myeloma Foundation
NON-PROFIT
12650 Riverside Drive, Suite 206
ORGANIZATION
North Hollywood, CA 91607-3421
U.S. POSTAGE
U.S.A.
PAID
www.myeloma.org
N. Hollywood, CA
(800) 452-CURE (2873)
PERMIT NO. 665
Change Service Requested
Foundation
Myeloma
International
©2010,
U.S.A.in
Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
Printed
2010 IMF Calendar of Events
July 16-17
IMF Patient & Family Seminar Cincinnati, OH
Oct 15-16
MMHÖ/IMF Patient & Family Seminar Vienna, AUSTRIA
July 23-25 IMF Support Group Leaders' Summit Dal as, TX
Oct 16
IMF Regional Community Workshop Raleigh/Durham, NC
Aug 6
IMF Regional Community Workshop Honolulu, HI
Oct 18
IMF Patient & Family Seminar Bologna, ITALY
Aug 13-14
IMF Patient & Family Seminar Philadelphia, PA
Oct 23
IMF Regional Community Workshop Overland Park, KS
Aug 21
IMF Regional Community Workshop Salt Lake City, UT
Oct 23
Myeloma Canada Patient, Family, & Healthcare Professionals
Aug 27-28
IMF Patient & Family Seminar Los Angeles, CA
Conference Richmond, BC, CANADA
Sept 5
International Community Workshop Berlin, GERMANY
Nov TBD
IMF Patient & Family Seminar Barcelona, SPAIN
Sept 11-12
IMF Patient & Family Seminar CZECH REPUBLIC
Nov 6
Southwest Symposium Tempe, AZ
Sept 18
IMF Regional Community Workshop Shreveport, LA
Nov 13
4th Annual Comedy Celebration Los Angeles, CA
Sept 23-24 6th International Serum Free Light Symposium Bath, UK
Nov 24
International Community Workshop Heidelberg, GERMANY
Sept 25
IMF Regional Community Workshop Las Vegas, NV
Dec 4-6
American Society of Hematology (ASH) Orlando, FL
Dec 18
IMF Patient & Family Seminar Würzburg, GERMANY
Additional events/meetings wil be posted in later editions of Myeloma Today as dates are finalized.
For more information, please visit www.myeloma.org or cal 800-452-CURE (2873).
IMFLatin America, IMFJapan and IMFIsrael events are not included above.
Thank you for your continued support of the IMF.