Myeloma
Today WINTER2010
Volume 8 Number 5
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
Supportive Care
Dr. Cristina Gasparetto (Duke University Medical
IMF Hotline Coordinators
Center, Durham, NC), who specializes in multiple
respond to a question about vita-
myeloma both in clinical practice and in the labora-
min D deficiency. People at risk
tory, talks about the current role of transplantation in
for vitamin D deficiency include
myeloma. She discusses autologous stem cell transplan-
those who have inadequate sun
tation (ASCT) and allogeneic stem-cell transplantation
exposure, inadequate dietary
(allo-SCT) and, as an author of the recent International
intake, severe liver disease, kid-
Myeloma Working Group (IMWG) consensus statement
ney problems, antiepileptic medications, or malabsorption due to health
regarding the current status of allo-SCT, Dr. Gasparetto shares the findings
issues. Because vitamin D deficiency is linked to more advanced stage of
recently published in the Journal of Clinical Oncology. PAGE 7
myeloma at diagnosis (portending poorer outcome), and to other health
Dr. Matthew T. Drake (Mayo Clinic, Rochester, MN), an
problems, maintaining adequate levels through supplementation is an
endocrinologist whose primary interest is in metabolic
important new aspect of myeloma care. PAGE 11
bone disease, talks about myeloma bone disease, and its
Greg Pacini, a licensed professional counselor and cer-
diagnosis and monitoring. He explains how biochemical
tified group psychotherapist with more than 30 years
markers of bone metabolism may be helpful in assessing
experience, talks about the difference between stress
both bone formation and resorption in myeloma. Dr.
and stressors, suffering and pain, and the nature of
Drake also addresses osteonecrosis of the jaw (ONJ),
the effect of novel drugs on myeloma bone disease, the
discomfort. Greg offers tools and suggestions that, with
development of a new osteoclast inhibitor, and the use of bisphosphonate
awareness and practice, can help us learn to master
therapy in myeloma. PAGE 8
our emotions and manage difficult feelings, during the
holidays and beyond. He also addresses the challenge
Dr. Joseph Mikhael (Mayo Clinic, Scottsdale, AZ),
faced by individuals who put everyone else first while having a hard time
whose clinical practice is dedicated to plasma cel
honoring their own needs and asking for help. PAGE 12
disorders, is also an educator and an investigator of
many clinical trials, primarily in relapsed myeloma. Dr.
Also in this issue...
Mikhael speaks about clinical trial design, the process
of new drug development, and the patient factors to be
Letters to the IMF PAGE 3
considered when selecting individualized anti-myeloma
therapy. He also offers a glimpse into the promising
Dear Reader by IMF president Susie Novis PAGE 4
myeloma drugs currently in the development pipeline that should become
News & Notes PAGE 6
available to patients in the near future. PAGE 8
NLB Update PAGE 13
Profiles in the News
International Affiliates PAGE 14
Spotlight on Advocacy PAGE 16
Robert Reeves was diagnosed with myeloma at age 72.
An athlete with a passion for running and cycling, Bob
Member Events PAGE 20
biked 150 miles for charity a year following his diagnosis.
2011 IMF Calendar of Events BACK COVER
He had a stem cell transplant at age 74. A regular caller
to the IMF Hotline during his eight years of living with
myeloma, Bob has coped with multiple tumors, radia-
tion, surgery, treatments that worked and those that
LOOKING FOR A LOCAL MYELOMA SUPPORT GROUP?
didn't, side effects of myeloma therapy, and the loss of a
Please visit our website at www.myeloma.org
wonderful wife of 54 years to cancer. Bob shares what has helped him on his
or call the IMF at 800-452-CURE (2873).
journey that might also be of benefit to you. PAGE 8
This issue of Myeloma Today is supported by
Binding Site, Celgene Corporation, Millennium: The Takeda Oncology Company, Novartis Pharmaceuticals, 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
Benson Klein
Susie Novis
E. Michael D. Scott
Loraine Boyle
Dr. Robert A. Kyle
John O'Dwyer
Igor Sill
Mark Di Cicilia
Dr. Edith Mitchell
Dr. S. Vincent Rajkumar
Allan Weinstein
Michael S. Katz
Charles Newman
Matthew Robinson
Amy Weiss
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, United Kingdom
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 Hájek, 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, United Kingdom
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, United Kingdom
Jayesh Mehta, USA
Guido J. Tricot, USA
Meletios A. Dimopoulos, Greece
Hĺkan Mellstedt, Sweden
Benjamin Van Camp, Belgium
Johannes Drach, Austria
Giampaolo Merlini, Italy
Brian Van Ness, USA
Brian G.M. Durie, USA
Gareth Morgan, United Kingdom
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 Grassroots Liaison
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
Director of Annual Giving and Social Media
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
Letters to the IMF
IMF Regional Community Workshops
How to Start a Myeloma Support Group
Dear Kelly,
Secure a location for the meeting as soon as practical. Consider
Thank you for the wonderful day at the IMF Regional Community
parking availability and handicap accessibility. Some suggestions
Workshop in Raleigh/Durham, NC. It was so uplifting, positive, and
are hospitals, community centers, libraries, and churches.
entertaining. We walked away with some more hope and were very
Pick a date and time convenient to you, taking into consideration
pleased to learn of the upcoming new drugs, clinical trials, etc. This
the best time for others to come to the meeting. Groups typically
has been a very daunting year and a half. It is people like you who
meet for two hours, and on a monthly basis.
really help people like us. Again, thanks.
Compose a letter that you can send to doctors, clinics, hospitals,
Ed and Nancy Brooks
and patients and family members informing them of the group.
Ask the office of your local oncologist to inform their patients
We enjoyed the Kansas City Area IMF Regional Community Workshop
about your group and post your flyer in their office.
in Overland Park, KS. Besides learning to live with myeloma, I am
List your group's meeting date, time, and place in your local
learning so much more about the disease. Since I don't fit the "typical
newspaper's health section (free). Involve local radio and TV
profile," I feel as if I am going in many different directions to gather
media to help create awareness of your group.
as much information as possible. Since I found out there is a myeloma
support group in Kansas City, I will attend the next meeting in
How the IMF can assist you
November. Thanks for all you do for myeloma patients!
Provide direction and ongoing assistance in starting your
myeloma support group.
Sherry Kennedy
List your support group on the IMF website.
Thank you for the fabulous IMF Regional Community Workshop you
Create a basic website for the group.
organized in Denver, CO. My family and I were really impressed with
Design a flyer for the group.
the content and quality of the presentations. There is nothing like
Mail out a flyer to patients in the area to help with outreach.
hearing directly from the medical specialists who deal with multiple
IMF staff can visit and provide you with free IMF publications
myeloma on a daily basis. Not only did we come away with addi-
and information.
tional knowledge, but my kids said they came away with more hope.
Provide you with an annual DVD of an IMF Patient &
Knowledge may be power, but hope is eternal. I think we are all better
Family Seminar.
prepared for whatever may face us in the future. I look forward to see-
Offer free IMF Patient & Family Seminar registration
ing you at the next support group meeting. Thanks again.
for support group leaders.
Access to specific website exclusively for IMF Support Group
Malena Garst
Leaders, as well as the Support Group Leader Listserv.
Multiple myeloma support groups
Invite you to the IMF Annual Support Group Leader Retreat.
Kelly,
Thank you so very much for the most informative meeting our Inland
Valley Multiple Myeloma Support Group has had in a very long time.
You and the nurse who spoke to our members were so clear, precise,
and forthcoming with important information. We send you both a big
thank you from our group!
Mary Ming-Mosley
If you would like to share your thoughts with the IMF or with readers
of Myeloma Today, or if you wish to suggest or contribute future content
for this newsletter, please contact:
Marya Kazakova Publications Editor
International Myeloma Foundation
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607
Currently there are over
mkazakova@myeloma.org.
100 myeloma support
groups that meet regularly. If there is not one in your area, we will
be happy to help you initiate one.
800-452-CURE(2873)
3
A Message from the President
Dear Reader,
The IMF is strongly committed to educating healthcare professionals.
The International Myeloma Foundation,
The Nurse Leadership Board (NLB) was founded by the IMF in 2006 in
the first myeloma organization in the
order to continually improve the care of myeloma patients through the
world, was founded 20 years ago with the
education of nurses. Their first guidelines, Managing the Side Effects of
firm belief that no one should ever have to
Novel Agents for Multiple Myeloma, was published in the Clinical Journal
face multiple myeloma alone. Since 1990,
of Oncology Nursing, June 2008. In 2010, for the 4th consecutive year,
families like yours have come to depend
the NLB presented a Satellite Symposium at the Annual Congress of the
on the important work that the IMF does
Oncology Nursing Society (ONS). As myeloma patients are increasingly
not only to improve their quality of life in
living longer and achieving extended disease-free periods as a result of
the short term, but also to ultimately find
novel drug therapies, the NLB's Long-Term Care Survivorship Plan is
the cure. The IMF has become the lead-
addressing the need for effective management of treatment-related side
ing international gateway for information
effects and other survivorship issues. The Satellite Symposium at ONS was
and resources in the fight against myeloma, serving more than 195,000
attended by a "standing room only" audience of 625 oncology nurses. Also
members patients, families, caregivers, and healthcare professionals in
in 2010, the nurses of the NLB educated their colleagues at 11 accredited
113 countries. As we mark our 20th anniversary, we celebrate the many
in-person meetings and through a series of accredited webinars, and
achievements in the myeloma community but remain committed to the
provided patient and caregiver education at four IMF Patient & Family
work that remains to be done to put the end to this disease, focusing our
Seminars, 10 IMF Regional Community Workshops, and 12 educational
efforts in four key areas:
conference calls. Another outstanding 2010 accomplishment of the NLB
is the first ever myeloma textbook for nurses. Joseph D. Tariman served
EDUCATION
as the textbook's editor and, along with nine NLB colleagues, contributed
Education is one of the strongest weapons in the
chapters to the book. The textbook, published by the ONS a mere year
fight against myeloma, and an independent survey
after its conceptualization, has been extremely well-received.
has rated the IMF as the number one patient resource
RESEARCH
for up-to-date information on treatments and clini-
cal trials, as well as its publications and educational
The IMF's collaborative research initiatives continue to
seminar programs. The IMF has held more than 200
lead the way as the myeloma community enters the era
educational patient meetings in 16 countries. The IMF produces publica-
of "tailored treatment," with new approaches aimed at
tions that address myeloma treatment options, clinical trials, and quality
customizing each myeloma patient's treatment to his
of life issues. Materials are available in 16 languages, and this extensive
or her specific needs. As our research successes contin-
library of pamphlets, booklets, and tip cards is available free of charge.
ue, we are making important strides toward myeloma
The complimentary IMF Info Pack, a compilation of these resources, is dis-
becoming a chronic disease, and moving closer and closer to a cure.
tributed annually to more than 20,000 patients, caregivers, and healthcare
The IMF's International Myeloma Working Group (IMWG) of 140 experts
professionals. The IMF's quarterly newsletter Myeloma Today has more
from around the world are pursuing their mission to conduct basic,
than 15,000 print subscribers, as well as a web view and pass-along rate
clinical, and translational research in a collaborative manner to improve
independently estimated at an additional 60,000 readers. The Myeloma
patient outcomes, and to provide scientifically valid and critically-
Minute, a frequently distributed e-mail newsletter with more than 16,000
appraised consensus opinions on the diagnosis and treatment of myeloma
subscribers, presents up-to-the-minute information about myeloma and
and related disorders. To date, IMWG members have had more than 30
IMF services.
papers published in the most prestigious peer-reviewed medical journals,
4
www.myeloma.org
Scientific & Clinical
including numerous myeloma guidelines and consensus statements, as
ADVOCACY
well as genetic publications linked to the IMF's Bank on a Cure® research
By building relationships and fostering meaningful
initiative. In 2010, the IMWG held its inaugural Myeloma Summit, a first-
change, the IMF is committed to supporting the needs
of-its-kind meeting, in order to identify, support, and implement the most
of everyone touched by myeloma. The IMF serves
promising research to prevent onset of active disease, improve treatment,
as a strong voice on behalf of our constituents in
and find a cure for myeloma.
favor of protecting and increasing myeloma research
In keeping with our efforts to make research more efficient and collabora-
budgets, improving access to quality care, advocating
tive, the IMF has initiated the new Global Clinical Trials Network (GCTN).
for appropriate and early Food and Drug Administration (FDA) approv-
And, with more than 100 grants awarded since 1994, the IMF's Brian
als, strengthening clinical trials, and ending the disparities in insurance
D. Novis Research Grants Program continues to fund junior and senior
coverage that affect patient care. The IMF's online Advocacy Action Center
projects. (The 2011 IMF Brian D. Novis Research Grant recipients and
www.advocacy.myeloma.org is a "one stop shop" for individuals who want
their projects will be profiled in the Spring 2011 issue of Myeloma Today.)
to communicate with their elected representatives on issues the IMF is
SUPPORT
tracking. The IMF provides information on key federal- and state-level ini-
tiatives that will have a significant impact on the lives of myeloma patients
The IMF offers support to all myeloma patients, and
and the cancer community at large, as well as tools needed to become
their families and caregivers, through its tol -free
proactive in these efforts and be an effective advocate.
Hotline 800-452-CURE (2873), as well as via e-mail,
with National Cancer Institute (NCI) trained specialists
In closing, as the IMF marks our 20th Anniversary, I can't help but remem-
who respond to over 4,300 phone calls and over 3,600
ber how it all began... with three people in a London coffee shop
e-mails each year. The IMF also provides blogs and
Dr. Brian Durie, Brian Novis, and me with an idea to create something
online listservs for the myeloma community.
that didn't exist, an organization dedicated to helping myeloma patients.
Brian Novis and Brian Durie, two remarkable men, put their heart and souls
The IMF web site www.myeloma.org receives an average of 70 million
into making the IMF what it is today. The passion they shared has made
"hits" per year, serving as a touchstone for everything the IMF has to offer
a world of difference in the lives of tens of thousands of patients around
and providing 24-hour access to news and information on myeloma, as
the world. Their passion has only grown stronger over the last 20 years,
well as our comprehensive publications, videos, and blogs. The site is
and it is shared by everyone here at the IMF. Our commitment to you is
multilingual and offers multi-media webcasting and downloads.
unwavering you are not alone and together we will find a cure
With a network of more than 100 myeloma support groups, the IMF seeks
for myeloma.
to ensure that patients and families have access to support and informa-
tion in their local communities. IMF representatives frequently visit the
groups and offer guidance as needed. In 2011, the IMF will host the 12th
annual myeloma Support Group Leaders Summit, an opportunity for
Susie Novis, President
Leaders to learn from each other, stay abreast of new advances in myeloma
treatment from invited speakers and have the opportunity to discuss the
many issues they encounter as leaders. They leave feeling renewed and
empowered with new information to share with their group members.
800-452-CURE(2873)
5
News & Notes
The content for the News & Notes section of Myeloma Today is drawn from a long list of publications
based on inquiries received by the IMF Hotline and the interests expressed by our readers.
To submit your inquiries or suggestions, please email MKazakova@myeloma.org.
ASH/ASCO clinical practice guideline
Phase 3 VISTA study results highlight CR
on the use of ESAs has been updated
as an important treatment goal
The clinical practice guideline of the American Society of Hematology
Analysis of the phase 3 VISTA study results show that superior outcomes
(ASH) and the American Society of Clinical Oncology (ASCO) for use of
are associated with complete response (CR) in newly-diagnosed multiple
erythropoiesis-stimulating agents (ESAs) in adult patients with cancer
myeloma patients treated with non-intensive therapy. The phase 3 VISTA
has been updated. Based on data published between January 2007 and
study of bortezomib (Velcade®) plus melphalan-prednisone (VMP) ver-
January 2010, the Update Committee recommends that clinicians treating
sus melphalan-prednisone (MP) as initial therapy in myeloma patients
patients undergoing myelosuppressive chemotherapy who have hemo-
ineligible for high-dose therapy demonstrated that VMP was superior
globin (Hb) less than 10 g/dL discuss the potential harms and benefits of
to MP across all efficacy end points. After nine 6-week cycles of therapy,
ESAs, and compare these with potential harms and benefits of red blood
the investigators assessed the participating patients using the European
cell (RBC) transfusions. Individual preferences for assumed risk should
Group for Blood and Marrow Transplantation (EBMT) criteria. CR was
contribute to shared decisions on managing chemotherapy-induced ane-
associated with significantly longer time-to-progression (TTP), time
mia. The Committee cautions against ESA use under other circumstances.
to next therapy, and treatment-free interval when compared to partial
If used, ESAs should be administered at the lowest dose possible and
response (PR). There was no significant difference in overall survival (OS);
should raise Hb to the lowest concentration possible to avoid transfu-
similar differences were seen with CR versus very good partial response
sions. ESAs should be discontinued after 6 to 8 weeks in nonresponders.
(VGPR). Quality of response improved with prolonged VMP treatment.
ESAs should be avoided in cancer patients not receiving concurrent che-
CR duration appeared similar among patients with "early" (cycles 1-4) and
motherapy, except for those with lower risk myelodysplastic syndromes.
"late" (cycles 5-9) response; the same conclusion was reached regarding
Caution should be exercised when using ESAs with chemotherapeutic
patients receiving 9 or fewer than 9 cycles of bortezomib within VMP. In
agents in diseases associated with increased risk of thromboembolic
conclusion, the Phase 3 VISTA investigators report that CR is an important
complications.
treatment goal and support prolonged VMP therapy to achieve maximal
MGUS follow-up and early diagnosis and
response. MT
prevention of myeloma-related complications
Monoclonal gammopathy of undetermined significance (MGUS) is asso-
Help the IMF learn more about myeloma patients
ciated with a long-term risk of progression to multiple myeloma or
Whether you are a myeloma patient or a caregiver who can provide
related malignancy. In a retrospective study, investigators reviewed 116
information on behalf of a patient, you can help the IMF by
patients from southeastern Minnesota seen at Mayo Clinic (Rochester,
participating in our latest Myeloma Patient Survey. No personal
MN) between 1973 and 2004 who were diagnosed with MGUS that subse-
identifying information is gathered as part of the survey. All responses
quently progressed to myeloma. The findings suggest that routine annual
are anonymous. Please visit at http://survey.myeloma.org.
follow-up of MGUS may not be required in low-risk patients. Future
studies are needed to determine the optimal frequency of monitoring in
higher-risk MGUS patients.
ASH 2010 Multiple Myeloma Highlights for Patients
The 52nd annual meeting of the American Society of Hematology (ASH) took
place December 47 in Orlando, FL. An overview of the myeloma highlights
from the ASH meeting will appear in the Spring 2011 issue of Myeloma
Today (Volume 8, Number 6). In the meantime, please visit the IMF website
www.myeloma.com to view webcasts from ASH, take part in an interac-
tive presentation on continuous therapy in myeloma, and access the video
from the IMF co-sponsored symposium, Key Myeloma Questions for 2010:
Latest Developments in Diagnosis, Prognosis, and Treatment.
6
www.myeloma.org
Scientific & Clinical
THE CURRENT ROLE OF TRANSPLANTATION IN MULTIPLE MYELOMA
Myeloma Today in conversation with Dr. Cristina Gasparet o
Please tell us about your medical background and
option has clearly surpassed the other treatment
how you came to work in myeloma.
approaches.
I received my medical training at the Sapienza University
Some doctors see the novel agents thalido-
of Rome, Italy. My residency in Internal Medicine was at
mide, lenalidomide (Revlimid®), and bortezomib
Duke University Medical Center, followed by residency
(Velcade®) as substitutes for a transplant, while I
in Hematology and Bone Marrow Transplant, also at
see novel agents as a way to improve upon transplant.
Duke. During my first year at Duke, I was called to a
In my opinion, the real question is, "What is the best
consultation with a young woman who had just been
sequential way to tackle myeloma?"
diagnosed with multiple myeloma. At that time, the
treatment options available to myeloma patients were
Our goal must be not to simply achieve complete
very limited. She was a candidate for a transplant and,
remissions (CR), but to achieve a CR with good depth
as she struggled with the decision, I wanted to help
and durability. As with other approaches to myeloma
her with the best recommendations I could give. This
therapy, the major failure of transplant is relapse, but
led me to do a lot of reading about myeloma. I knew
transplant patients usually experience longer periods
at that point that I wanted to make myeloma the focus
of progression-free survival (PFS) and often have lon-
of my medical career. I spent the last two years of my
ger periods of time off therapy. This also helps them
fellowship doing myeloma research in the laboratory.
avoid developing significant toxicity-related issues
Cristina Gasparetto, MD
and/or drug resistance.
Do you currently work both in the lab and in
Duke University Medical Center
the clinic?
Over the past decade, I have acquired a lot of
Durham, NC
Before my work at Duke University Medical Center,
experience with transplants in myeloma. ASCT is
when I first came to the US from Italy, it was on a scholarship. I worked
not a perfect solution to myeloma, but I think it
in the lab at Memorial Sloan-Kettering Cancer Center, where I focused
remains a valid option, particularly for younger patients. In transplant,
my research on stem cells and growth factors for stem cell mobilization.
one approach is a short course of powerful induction therapy; the other
I was involved with a lot of pre-clinical studies. At that time, the dendritic
approach is to continue therapy with consolidation and maintenance. The
cell vaccine was introduced for other cancers, and I thought it would be
second choice requires us to continue therapy longer we cannot stop
interesting to explore this avenue in myeloma. When I joined the faculty,
after just a few cycles. Younger patients may not wish to spend much of
I kept my laboratory work going, even though it was difficult to do both
the rest of their lives receiving anti-cancer therapy, so a more aggressive
clinical and lab work simultaneously. I love my clinical work because I
transplant approach may be the right choice for these individuals. Others
really love working with patients and participating directly in their care,
may not be able to tolerate the toxicity of therapy that goes on for a pro-
which was why I became involved with translational research and clinical
longed period of time.
trial development.
This is why I tailor therapy to each individual patient. Some patients
Currently, what is your primary focus?
prefer to "go for the cure" while others decide that it is more appropri-
ate to control the disease without attempting to cure it. Plus, given the
I have always been interested in transplantation, both in terms of my
heterogeneity of myeloma, what is a reasonable goal for one patient may
laboratory research and in terms of working with patients with hemato-
not be for another.
logic malignancies who could be candidates for high-dose chemotherapy
and stem-cell transplantation. I am involved both with laboratory and
You are a member of the IMWG, which recently published a paper
clinical research, following my interest in developing immunotherapy
on allogeneic transplantation. Please tell us about that consensus
approaches to treating myeloma, particularly in conjunction with stem cell
statement.
transplantation. My current lab research projects include the development
The IMF's International Myeloma Working Group (IMWG) consensus
of dendritic cell vaccines and antibody therapies. Clinical studies include
statement regarding the current status of allogeneic stem-cell transplan-
a recently approved trial involving vaccination with autologous dendritic
tation (allo-SCT) as a treatment option for myeloma was published in
cells pulsed with idiotypic protein following high-dose chemotherapy and
October by the Journal of Clinical Oncology. The IMWG reviewed the
autologous stem cell transplant (ASCT). Upcoming trials include novel
results from prospective and retrospective studies of allo-SCT in myeloma.
antibody therapies. I am also an investigator on several other clinical tri-
Allo-SCT, which uses cells from a compatible donor, is a treatment with
als for myeloma, including non-myeloablative allogeneic transplantation,
a potential to cure myeloma due to the graft-versus-myeloma (GVM)
high-dose sequential chemotherapy and ASCT, and transplantation of
effect, and because the donor cells are free from myeloma contamination.
partially HLA-matched unrelated cord blood.
However, given the high treatment-related mortality rates with allo-SCT,
How would you assess the current role of transplantation in
and the increasing survival rates being achieved with other anti-myeloma
myeloma?
therapies and supportive care, allo-SCT should only be recommended in
the context of clinical trials until it is made safer and more effective for
For now, myeloma remains an incurable disease, and we have only three
patients with myeloma. The promising results of reduced-intensity condi-
options to offer our patients chemotherapy, transplantation, and novel
tioning (RIC) transplantation in low-grade lympho-proliferative disorders
agents. Since we have not yet cured anybody, I don't think that any one
CONTINUES ON PAGE 10
800-452-CURE(2873)
7
Scientific & Clinical
BONE DISEASE IN MULTIPLE MYELOMA
Myeloma Today in conversation with Dr. Mat hew T. Drake
Please tell us about your medical background.
myeloma, and presents novel markers that may be
The 2010 annual meeting of the American Society of
of interest in the future.
Clinical Oncologists I studied biology at Harvard and
Is there a correlation between myeloma bone
worked at the Massachusetts General Hospital with a
disease and the myeloma itself?
group interested in bone biology, so my interest in bone
It does not appear that the myeloma cells are the
started in college. I received my medical degree and com-
direct cause of bone loss, but they affect the bone
pleted my doctoral work in Molecular and Cell Biology
cells that, in turn, cause the bone loss. In general,
at Washington University (St. Louis, MO). Subsequent
patients who have more extensive myeloma tend to
to that, I did my residency and fellowship in Internal
have more bone damage. Approximately 85-90% of
Medicine/Endocrinology at Duke University (Durham,
myeloma patients have some sort of lytic (destruc-
NC), followed by two more years there as a Postdoctoral
tive) bone disease as a complication of their myelo-
Fellow. In 2006, I came to Mayo Clinic (Rochester,
ma. The majority of myeloma patients have bone
MN) as a Postdoctoral Clinical and Research Fellow in
lesions that result in skeletal-related events (SREs).
Endocrinology. Since 2007, I have been Senior Associate
Consultant (Endocrinology) and Assistant Professor of
It is also known that patients with MGUS, even those
Medicine (College of Medicine) at Mayo Clinic.
who never progress to myeloma, are at a higher risk
for osteoporotic fractures than individuals who do
Recently you were invited to join the IMF's
not have MGUS. I think it is reasonable for MGUS
International Myeloma Working Group (IMWG).
patients to have their baseline bone mineral density
How did you develop an interest in myeloma?
Matthew Truman Drake, MD, PhD
determined.
Mayo Clinic
Endocrinology can be subdivided into several sub-spe-
Patients with MGUS or myeloma may experience
Rochester, MN
cializations, and my primary interest is in metabolic bone
fractures, radiation or surgery to bone, spinal cord
disease. It was not until I came to Mayo in 2006 that I started to work in
compression, and hypercalcemia (elevated calcium levels in the blood).
myeloma. Clinically, I spend about a quarter of my time seeing patients
Bone lesions rarely heal even in those myeloma patients who have
with metabolic bone diseases, including myeloma and MGUS (monoclonal
achieved a complete remission (CR). Without therapy for their bone dis-
gammopathy of undetermined significance).
ease, more than half of myeloma patients with stage III disease will experi-
In brief, please describe myeloma bone disease.
ence at least one SRE over the span of two years. On average, patients who
In a healthy individual, there is a balanced continuous process of removal
do not have myeloma bone disease have a better prognosis than those
of old bone by osteoclasts and replacement with new bone by osteoblasts.
who do.
This process is normally well coupled, so that on average we completely
Please give us some examples of bone markers and their use in
replace our skeletons every 6-7 years. In a number of bone diseases, there
myeloma.
is increased bone breakdown (resorption), but myeloma bone disease is
Bone markers help assess bone turnover. In myeloma the bone resorption
rather distinct from other bone diseases because it also involves decreased
markers are more useful than the bone formation markers in assessing
bone formation (remodeling). In myeloma, there is both increased acti-
bone disease, and they have also been shown to correlate with stage of
vation of osteoclasts and suppression of osteoblasts. Thus in myeloma,
myeloma. The bone resorption markers that appear to be more useful
bone is being destroyed at an accelerated rate and not being then
in myeloma include urinary NTX, serum CTX, and serum ICTP. In my
actively rebuilt.
practice, I frequently use the serum CTX marker with myeloma patients
How is myeloma bone disease diagnosed and assessed?
because it's a simple blood test done fasting in the morning, and it gives
In myeloma, bone scans can be misleading because they are based on the
me a some sense of whether the disease is active or not, especially if I track
bone formation process. However, in myeloma, the bone building cells are
the patient over an extended time.
not working properly. As a result, it is easy to underestimate the extent of
What about anti-resorptive therapy?
myeloma bone disease. Thus in myeloma, plain X-rays and MRIs are more
Biochemical bone turnover markers have been used in studies of myeloma
accurate than bone scans.
patients to monitor response to bisphosphonate therapy, and in stud-
What other options are there?
ies aimed at determining those patients who would most benefit from
In myeloma, biochemical bone turnover markers of bone metabolism may
bisphosphonate therapy to decrease bone resorption. Data from such
be helpful in assessing both bone formation and resorption, and may
studies demonstrate that while the majority of patients have a good clini-
provide useful information on myeloma disease activity in bone. Bone
cal response to bisphosphonate therapy and decrease their bone resorp-
turnover markers have also been used for the early diagnosis of bone
tion markers, there are some myeloma patients who do not respond to, or
lesions, for evaluating the extent of myeloma bone disease, and to mea-
who stop responding to bisphosphonate therapy over time.
sure response to anti-myeloma therapies. However, there has been no
How would you assess the risk of ONJ?
consensus for the use of bone turnover markers in myeloma. The recent
With improved recognition of osteonecrosis of the jaw (ONJ), and
IMWG report, published in Leukemia, summarizes the current data for
improved dental care, the risk of developing ONJ has significantly
the use of markers of bone remodeling to assess the extent of myeloma
decreased. The rate of ONJ is currently about 2-4%. In addition to our
bone disease and to monitor bone turnover during anti-myeloma treat-
heightened awareness and improved dental care efforts up front, we look
ment, proposes markers that may have a role in caring for patients with
forward to studies aimed at determining if decreased cumulative bisphos-
CONTINUES ON PAGE 10
8
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Scientific & Clinical
CLINICAL TRIALS IN MULTIPLE MYELOMA
Myeloma Today in conversation with Dr. Joseph Mikhael
Please tell us about your medical background and
to benefit from that particular drug. If the drug is
current affiliations.
shown to be effective, we hope that in the long run
I graduated from medical school at the University of
it will also be shown to improve patient survival.
Ottawa in Canada. My internal medicine residency at
What is your assessment of the current range
the Ottawa General Hospital was followed by hematol-
of myeloma therapies?
ogy training in Toronto, along with a masters' degree in
There has been a major shift in the field of myelo-
education at the University of Toronto - Ontario Institute
ma. Not long ago, a doctor might have said, "My
for Studies in Education (OISE). In 2004, I completed
standard treatment for myeloma is X." We had very
a two-year multiple myeloma fel owship at Princess
few bullets for the gun, and when the bullets ran
Margaret Hospital in Toronto, primarily under the guid-
out, they ran out. Doctors now have an arsenal of
ance of Dr. Keith Stewart. From 2004 until starting at
weapons to help patients fight myeloma. The reason
Mayo Clinic in January 2008, I was a staff hematologist
for this is the research that has allowed us to under-
and education coordinator for hematology at Princess
stand myeloma on a molecular level.
Margaret Hospital.
How does one select the best treatment?
I am a consultant hematologist at the Mayo Clinic in
Scottsdale, Arizona. I specialize in plasma cell disorders:
There are several factors to be considered, both for
myeloma, amyloidosis, and Waldenstrom's macroglobu-
the disease and for the patient. We have learned that
linemia. I am currently the principal investigator (PI) of
there are as many as six types of myeloma. To keep
Joseph Mikhael, MD, MEd, FRCPC
many clinical trials, primarily in relapsed myeloma. My
Mayo Clinic
things simple, I'll break it down into the three major
clinical research interests also include the transforma-
Scottsdale, AZ
groups: standard-risk, intermediate-risk, and high-
tion of MGUS to myeloma, pharmaco-economics, and
risk disease. We treat patients differently depending
supportive care in cancer. I am currently the PI of the prECOG study
on which risk group their disease belongs to. We also consider several
evaluating the use of lenalidomide (Revlimid®) in patients with renal
patient factors. Does the myeloma patient have kidney or other organ
insufficiency.
involvement? Does the patient live far away from a medical facility and,
therefore, prefer an oral therapy to an intravenous one? Does the patient
In addition, I continue to be heavily involved in education. I am an
have specific symptoms that may eliminate some treatment options while
assistant professor at the Mayo College of Medicine, the Vice-Chair of
pointing us in a different direction? We individualize the treatment based
Education for the division of Hematology-Oncology, the program direc-
both on myeloma features and patient features.
tor of the Hematology-Oncology Fellowship Training Program, and the
Vice-Chair of the Graduate Education Committee at Mayo Clinic (Arizona).
What new treatments might become available for myeloma in the
near future?
How did you develop an interest in myeloma?
I would separate those into two categories: promising new versions of
I was influenced by my mentor, Dr. Stewart, and I was fascinated by the
the older drugs as well as completely new mechanisms of drugs. Both of
complexity of this disease and by how much better we could make our
those development pipelines are very deep. Currently, the three major
patients with the novel therapies, which is what got me interested in
anti-myeloma drugs on the market are thalidomide and lenalidomide,
myeloma research.
which belong to the same drug family, and bortezomib (Velcade®). In
Do you work both in the clinic and in the lab?
both drug families, there are new drugs being developed.
One of the benefits of working at Mayo Clinic (Arizona) is that we have
The next-generation drug in the thalidomide and lenalidomide family
three of the best myeloma researchers Keith Stewart, Rafael Fonseca,
that's showing a lot of promise is pomalidomide, which seems to be very
and Leif Bergsagel. With them in the lab, I am able to split my time
well tolerated and is not associated with peripheral neuropathy (PN). It is
between clinical research and clinical practice, as well as continue my
soon to begin phase III clinical trials. Similarly, there are several next-gen-
work in education. My research work in myeloma is all clinical, be it thera-
eration proteasome inhibitors being developed. The front-runner seems
peutic trials or supportive care. I follow up on what Drs. Stewart, Fonseca,
to be carfilzomib, which is already under phase III investigation. In the
and Bergsagel do in the lab. My role in the bench-to-bedside paradigm is
US, it is likely to be the next drug to receive FDA approval for myeloma.
to help bring some of what they learn in the lab into the clinic setting.
The other drugs in the bortezomib family that are being developed for
What is your approach to myeloma research?
myeloma are either not associated with PN, can be given less frequently, or
are administered orally. So the outlook in this category is very promising.
It is a three-step process. A better understanding of myeloma leads to bet-
In addition, there may be as many as 20 drugs being developed that are
ter drugs for this disease, which leads to better survival for patients. This
completely new to myeloma but could become a big part of what we will
requires getting samples from patients and having a sophisticated mouse
be able to offer patients in the near future.
model, which we have at Mayo. We can give mice myeloma, then test
new drugs or test blood levels to gain knowledge about how this disease
Currently, drug development is less about directly attacking the plasma
changes over a rapid period of time. This enables us to understand the
cell (the key cell in myeloma) and more about interrupting the bone mar-
pathways of the disease, so that drugs can be developed to counteract
row microenvironment. We know that in myeloma the communication
those pathways. When a new drug is developed, my role is to design clini-
between the cells and their environment is very sophisticated, so we are
cal trials for the specific group of myeloma patients who are most likely
trying to make it harder for the myeloma cells to thrive.
CONTINUES ON PAGE 10
800-452-CURE(2873)
9
Scientific & Clinical
GASPARETTO / TRANSPLANTATION -- continued from page 7
renewed the interest in allo-SCT as a treatment option for myeloma.
Any closing comments?
However, no definite conclusions could be drawn as to whether allo-RIC
The survival of patients with myeloma has improved significantly over the
was even of benefit. Future studies of allo-SCT in myeloma should aim
past decade. Not only are many patients living longer, but many also have
at improving the graft-versus-myeloma (GVM) effect while reducing the
good quality of life. The overall outlook is encouraging, and it continues
morbidity and mortality of allo-SCT.
to improve. MT
DRAKE / BONE DISEASE -- continued from page 8
phonate dosing and decreased dosing frequency will further decrease the
myeloma has been evaluated in several studies. The available data indi-
incidence of ONJ.
cate that immunomodulatory drugs have more effect on osteoclast activ-
What about denosumab, a bisphosphonate currently in clinical
ity than on osteoblast activity. Two clinical phase II trials have studied
trials?
the effect of thalidomide on bone metabolism in myeloma. One study of
Denosumab is a potent new osteoclast inhibitor. It targets the same cells
relapsed/refractory patients showed that after six months of therapy with
but uses a completely different mechanism of action than the bisphos-
thalidomide plus dexamethasone (TD) there was a significant reduction of
phonates Zometa® (zoledronic acid) and Aredia® (pamidronate). It has a
serum levels of some bone markers. The other study of newly diagnosed
much shorter duration of action, staying in the bones approximately 3-6
myeloma patients showed that the combination of TD and zoledronic acid
months, not 5-10 years like we believe some other bisphosphonates do.
(Zometa®) for four months produced a significant reduction of urinary
Also, it does not seem to have an adverse effect on renal function. In a
NTX and serum CTX in patients who responded to therapy. There is lim-
recent study of 1776 patients with solid tumors or myeloma who had not
ited data on the effects of lenalidomide on myeloma bone disease. Studies
previously received intravenous bisphosphonates, those who were ran-
have shown that bortezomib may decrease bone resorption and increase
domized to receive 120 mg of subcutaneous denosumab attained results
bone formation, but data suggest that the beneficial effect of bortezomib
similar to the patients who received intravenous zoledronic acid every 4
may be reduced when it is combined with other anti-myeloma agents.
weeks. Denosumab also reduced urinary NTX levels by more than 80%
What do you anticipate in your field in the near future?
within the first month. However, in the subgroup of patients with myelo-
Better understanding bone disease and the bone marrow microenviron-
ma (approximately 10% of the total study population), denosumab was
ment, the area within the bone where myeloma cells grow, is crucial to
associated with significantly worse survival. As a result, the FDA did not
controlling and/or curing myeloma. Clinical trials are needed before bio-
approve the drug for treatment in myeloma. Further studies are needed to
chemical markers of bone remodeling become part of the routine clinical
evaluate the safety and efficacy of denosumab in myeloma.
care of myeloma patients. There are ongoing studies with breast cancer
What is the effect of novel anti-myeloma agents on bone markers?
patients and in patients with other forms of cancer and bone metastases,
The effect of novel drugs thalidomide (Thalomid®), lenalidomide
and trials in myeloma are anticipated in the future. MT
(Revlimid®), and bortezomib ( Velcade®) on bone metabolism in
MIKHAEL / CLINICAL TRIALS -- continued from page 9
Also, it is important to remember that we are not looking for one silver
this disease has improved tremendously. We can now detect the disease
bullet. We are learning to combine drugs, old and new, to increase efficacy
at a much lower lever than ever before, both at initial diagnosis and at
and lessen toxicity. This approach also helps us counter drug resistance.
relapse, and we can run tests that help us stratify the patients. The use
There is such a complex nature to the growth and development of
of newer drugs and drug combinations is resulting in longer and deeper
myeloma that we have not been able to shut it down with a single drug.
remissions for many patients. Another important point is that supportive
One patient might have more than one type of myeloma growing in them
care continues to get better. We don't just treat the myeloma, we are con-
simultaneously, and a strategic combination approach appears to be most
tinuing to get better at treating the whole patient.
successful at limiting the disease. Some of these therapies are only avail-
I consider myself an optimistic realist and, overall, the future looks
able in the context of a clinical trial.
very optimistic. Although myeloma is still not curable, we have seen
So who is the best candidate for entering a clinical trial?
a tripling in the average patient survival rates. Dramatic progress has
Clinical trials are available to patients at all stages of myeloma, and we
been made in the field in the last decade, and our understanding of
encourage all patients to consider participating if there is one available to
myeloma has improved significantly in the last three years. But our suc-
them. There is no down side. Clinical trials are not using people as guinea
cesses notwithstanding, we all share a very strong drive to find better and
pigs. Clinical trials are providing patients an opportunity to be treated
longer-lasting therapies.
with either a validated therapy or a therapy that's undergoing validation.
In the meantime, I would stress the importance of myeloma patient educa-
Patients always have the option to opt for standard therapy later on. Of
tion. This is a very complex disease, and knowledge IS power. While sci-
course, as with all other important decisions, it is very important to have
entists and clinicians seek to better understand the disease and to develop
clear and honest discussions with the healthcare provider and the team
better treatments, I would encourage all patients to take a participatory
running the trial.
role in their own care in partnership with their healthcare providers. MT
Any closing comments?
Our management of myeloma the ability to diagnose, treat, and monitor
10
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 Nancy Baxter, Debbie Birns, Paul Hewitt, and Missy Klepetar. 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 read several articles about
patients with newly diagnosed myeloma.
vitamin D supplementation. As a mul-
At the Los Angeles IMF Patient & Family
tiple myeloma patient, I am curious
Seminar in August 2010, Dr. Robert Kyle
if vitamin D deficiency plays a role in
stated that all myeloma patients should
myeloma?
have their calcium and vitamin D levels
Vitamin D is a hormone produced by the skin
checked. Population reference ranges for
when it is exposed to ultraviolet B radiation
vitamin D vary widely depending on eth-
from sunlight. It can also be ingested from
nic background, age, geographic location,
dietary sources (vitamin D-fortified dairy
and season, so they cannot be given as a
products, fatty fish, eggs, and meat) and oral
blanket statement. Kennel et al at Mayo
supplements. Vitamin D is essential for the
make the following recommendations:
metabolism of calcium and for skeletal health.
· Measurement of the total 25(OH)D level is the preferred means of assessing
According to studies published in the Archives of Internal Medicine in 2007
vitamin D stores in the body.
and the Journal of the American Geriatric Society in 2009, higher vitamin D
levels have also been associated with increased longevity.
· Adequate vitamin D intake cannot be maintained by diet alone; vitamin D
supplementation is safe and inexpensive. Revised dietary reference intakes
People at risk for vitamin D deficiency include those who have inadequate sun
from the Institute of Medicine are in process.
exposure, inadequate dietary intake, severe liver disease, kidney problems, or
malabsorption because of one of a number of gastrointestinal issues. Certain
· Supplementation should be with vitamin D3 in general, but vegans and
antiepileptic medications can also cause low levels of vitamin D. The Centers
vegetarians will better absorb vitamin D2.
for Disease Control reports that the percentage of Caucasian adults who have
· If a patient is severely vitamin D deficient, a "loading dose" of 50,000 IU of
adequate levels of vitamin D declined to approximately 30% in 2001-2004.
vitamin D orally once weekly for 2-3 months, or 3 times weekly for 1 month,
During the same period, only 5% of African-Americans had sufficient levels
may be necessary. For mild to moderate deficiency, a shorter treatment inter-
of vitamin D.
val or lower dose may be effective.
Vitamin D deficiency has played a prominent role in the medical press of
· Regardless of initial vitamin D therapy, a maintenance/prevention dose of
late, and has been linked to a host of illnesses including colon, breast, and
800-2,000 IU daily will be needed to avoid recurrent deficiency.
prostate cancer, vascular disease, infectious conditions, autoimmune diseases,
osteoporosis, type 2 diabetes, obesity, and cognitive decline. Not surprisingly,
· Both vitamin D3 and vitamin D2 should be taken with a meal containing fat
vitamin D deficiency also plays a role in the clinical presentation and progno-
to ensure maximum absorption.
sis of myeloma.
In addition to the above recommendations, Dr. Brian Durie of the IMF urges
In the March 2009 article in the American Journal of Hematology entitled
follow-up testing of vitamin D levels to ensure adequate supplementation and
"Impact of vitamin D deficiency on the clinical presentation and prognosis of
absorption, particularly at the time of relapse. If the hematologist/oncologist
patients with newly diagnosed multiple myeloma," Drs. Ng, Kumar, Rajkumar,
who treats you is in doubt about assessing and maintaining adequate levels of
and Drake of the Mayo Clinic report on 148 newly diagnosed patients whose
vitamin D, Dr. Durie stresses the need for a referral to an endocrinologist who
vitamin D levels were tested within 14 days of diagnosis. They found that
deals with bone issues to evaluate your situation and make recommendations.
ISS (International Staging System) stage increased in parallel with vitamin
Myeloma patients should be closely monitored throughout the course of their
D deficiency, suggesting that vitamin D deficiency "may portend poorer out-
treatment, not only for levels of M-protein and blood counts, but also for
comes in subjects with MM." Vitamin D deficiency occurred in 16% of patients
levels of serum calcium and serum creatinine, both closely related to vitamin
with stage I, 20% of patients with stage II, and 37% of patients with stage III
D levels. These tests should be routinely performed as components of the
myeloma.
metabolic panel. It is important to note that the United States Department of
Patients who were vitamin D deficient had higher levels of C-reactive protein
Agriculture (USDA) table of Dietary Reference Intakes states that "patients on
(CRP), a marker of systemic inflammation, and of creatinine, a marker of kid-
glucocorticoid therapy may require additional vitamin D." Glucocorticoids, of
ney dysfunction. High levels of both CRP and creatinine in newly diagnosed
course, include such medications as dexamethasone, prednisone, and meth-
myeloma patients have been shown to predict poorer outcome and survival.
ylprednisolone, common components of myeloma treatment.
Contrary to their original hypothesis, however, the researchers did not find
Until further research is done on vitamin D levels in myeloma patients, we can-
that lower levels of vitamin D correlated with skeletal morbidity (increased
not automatically make the assumption that patients' outcomes will improve if
lytic lesions, long bone fractures, or vertebral compression fractures) at the
they achieve a normal level of vitamin D. What we do know, however, is that
time of diagnosis. This finding does not, however, preclude the possibility
vitamin D deficiency is linked to more advanced stage at diagnosis (portend-
that low levels of vitamin D may play a role in the subsequent development of
ing poorer outcome), and to a host of other health problems. Maintaining
new skeletal lesions or in the progression of bone disease following diagnosis.
adequate levels of vitamin D is thus an important new aspect of myeloma care.
The Mayo authors conclude by asserting the need for larger population-based
As always, we urge you to discuss this and all other medical issues thoroughly
studies to confirm their research and more fully assess the role of vitamin
with your doctor, and to call the IMF Hotline, 800-452-CURE (2873), for help
D deficiency in disease progression, overall survival, and quality of life in
with your questions. . MT
800-452-CURE(2873)
11
Supportive Care
HOPE, STRESS, MYELOMA & THE HOLIDAYS
Myeloma Today in conversation with Greg Pacini, MS, LPC, CGP
On November 19, 2010, the IMF held a teleconference
yourself, "It's reasonable that I feel this way." When
on Hope, Stress, Myeloma & the Holidays. The event,
we accept what we feel, we stop struggling within
which was part of the IMF's quarterly Living Well with
ourselves. We then move forward more naturally
Myeloma conference call series, was moderated by Susie
with right Action.
Novis, IMF President. This was the final installment of
We can regulate our emotional discomfort. For
the call series for 2010, and featured guest speaker Greg
example, we can use doorways as cues. Walk into
Pacini. Greg has been a friend of the IMF for many years.
the kitchen, and notice how you feel. Get into the
He holds a master's degree in guidance and counseling,
car, and notice what you're thinking. Walk into the
and is a Licensed Professional Counselor and Certified
doctor's office, and notice your reaction. If you are
Group Psychotherapist with more than 30 years expe-
not in physical pain but find yourself in discomfort,
rience, including 20 years focused on support of the
I invite you to shift out of that. If you have ever felt
chronically and terminally ill, their caregivers, and the
hope, strength, love, or joy, you are clearly capa-
medical professionals who serve them. Greg is in private
ble of them. Those emotions are simply not being
practice in St. Louis, MO, and speaks locally and nation-
accessed now.
ally. Greg's book, Journey Beyond Diagnosis, takes a
compassionate look at the vast landscape of an illness
How does one transition from fear to hope?
experience, offering assistance to survivors, caregivers,
I like to quote the writer Lu Xun, "Hope is like a
and medical professionals alike.
path in the countryside: originally there was no path
In your professional opinion, what are the biggest
-- yet, as people are walking all the time in the same
Greg Pacini, MS, LPC, CGP
holiday stress factors for myeloma patients and their
spot, a way appears." Neuroscientists tell us that the
loved ones?
brain acts exactly this way. When we persist in a
particular set of thoughts or feelings, the brain creates neuropaths to sup-
It could be something small. It could be something more significant like
port those thoughts or feelings. If we frequently entertain thoughts that
whether you have the strength to do the things you wish this holiday sea-
are hopeful, the mind creates a network of nerve cells to support those
son. It could be a physical issue or how you feel emotionally, something
thoughts and feelings and, pretty soon, there's a path there of hope or of
with relationships or even financial. Let's start by talking about the differ-
joy or of love.
ence between stress and stressors, suffering and pain, and about discom-
fort in general. As we do that, we'll focus on hope.
Now, what I'm learning about how this works at the cellular level, is that
when we feel fearful or angry or sad, neuropeptides associated with those
A stressor is an event in the physical world that has the potential to stress
emotions are released, landing on the cells and leaving less space for
us. Stressors trigger reactions within us, usually accompanied by uncom-
neuropeptides related to hope. This explains why, if you've been sad for
fortable thoughts or feelings, which can affect our behavior. We are con-
a long time, it's difficult to start feeling hopeful. On the other hand, if we
stantly exposed to stressors, but whether or not we become uncomfort-
begin to experience hope, the cell says, "We've got to start making room
able is based on our response. What is stress for one person may not
for hope." The more we make room for hope, the less space there is for
be for another. For example, one might react to a snow storm by saying,
the neuropeptides associated with sadness. It takes awareness and prac-
"Look, it's snowing! It makes me feel peaceful." and another might say,
tice, but this is something we can regulate. The more we practice it, the
"It's snowing, and I hate it because it's going to take me 45 minutes longer
easier it becomes to experience emotions that feel better.
to drive home." The stressor is the snow, but one person experiences
peace while another experiences the discomfort of stress.
One teleconference participant asked about referring to her disease
as "my myeloma." What are your thoughts on "owning" the disease?
How do you define the difference between emotional pain and
suffering?
There's nothing wrong with referring to it as "my myeloma" if your body
contains it. But I don't know that your spirit or your thoughts or your
Pain is a part of the human experience. It can be physical, emotional,
emotions have to. There's information available about using visualization
mental, or spiritual. The pain you feel from a medical treatment or from
to release illness, and some people have had good results with visualizing
witnessing a loved one in pain is real and it's happening in the moment.
their body without disease. The body responds to our thoughts, which
Suffering comes from a thought like, "I'll probably feel as bad at New
in a sense, are visualizations. It's probably more useful to say "I have an
Year's as I did at Thanksgiving." Suffering is thinking about pain that might
illness." Between you and me, and the quietness of your own spirit, con-
happen or has happened. Suffering is optional.
sider thinking, "I am releasing this illness."
How do we manage difficult feelings during the holidays?
Another caller asked about her guilt associated with having trouble
We have an absolute right to whatever we feel. Emotions are neither right
orchestrating the perfect holidays.
nor wrong. Honoring our difficult emotions is as important as those that
You can attempt to influence the situation. Let people know in advance
feel good. Feelings are simply guideposts. With practice, we can shift emo-
that you're going through a difficult time and how important it is for you
tions to feel something different, if only for a moment. We can learn to
to enjoy the holidays together. "Let's make a choice. We can talk about the
master our emotions instead of allowing them to master us.
sad stuff or we can put that on hold. We can laugh, hold each other, and
The first thing to do in dealing with any emotion is to Acknowledge it:
make this a special time." It's not about not feeling, it's about choosing.
"I'm sad. I'm scared. I'm angry." The second step is to Accept it. If you
are in remission and the tests are good, but you still feel anxious, say to
CONTINUES ON PAGE 15
12
www.myeloma.org
Nurse Leadership Board
REPORT FROM NLB VI
Page Bertolotti, RN, BSN, OCN
Cedars-Sinai Outpatient Cancer Center
The IMF Nurse Leadership Board (NLB)
Samuel Oschin Comprehensive Cancer Institute
was founded as a partnership with mul-
Los Angeles, CA
tiple myeloma nurses to gain insights into
Elizabeth Bilotti, RN, MSN, APRN, BC, OCN
their unmet needs and to address them
John Theurer Cancer Center at HUMC
and those of their patients by accomplish-
Multiple Myeloma Division
Hackensack, NJ
ing the following objectives:
Kathleen Colson, RN, BSN, BS
·Provide insights into the needs of
Dana-Farber Cancer Institute
myeloma nurses and their patients.
Boston, MA
·Identify and implement key nurse and
Deborah Doss, RN, OCN
patient education programs.
Dana-Farber Cancer Institute
·Facilitate information flow between the
Boston, MA
At NLB VI, nurses celebrate the 4th anniversary of the
IMF, oncology nursing organizations,
founding of the IMF Nurse Leadership Board
Beth Faiman, MSN, APRN-BC, AOCN
and patients.
Cleveland Clinic Taussig Cancer Institute
· Participated as faculty at the annual Oncology
Multiple Myeloma Program
The NLB, which is made up of experienced specialty
Nursing Society (ONS) meeting.
Cleveland, OH
oncology nurses, published the first comprehensive
· Presented at a meeting by IMF-Japan.
Charise Gleason, MSN, NP-BC, AOCNP
guidelines Managing the Side Effects of Novel Agents
· Presented at a meeting of the Canadian Association
Emory University Winship Cancer Institute
for Multiple Myeloma for nurses who work with
of Nurses in Oncology.
Atlanta, Georgia
myeloma patients receiving thalidomide, lenalidomide
· Conducted patient focus groups for IMF.
Bonnie Jenkins, RN
(Revlimid®), and/or bortezomib (Velcade®) therapy.
University of Arkansas Medical Sciences
· Conducted a series of accredited nurse education
The NLB consensus guidelines, published in the
Little Rock, AR
teleconferences/webinars.
June 2008 as a supplement to the Clinical Journal of
Kathy Lilleby, RN
Oncology Nursing, with 70,000 prints in circulation,
· Conducted educational teleconference during
Fred Hutchinson Cancer Research Center
Seattle, WA
continue to be immeasurably valuable to the general
Myeloma Awareness Week.
nursing community involved in myeloma care.
· Worked with elected government officials on
Patricia A. Mangan, APRN, BC
oral drug parity and access issues.
Abramson Cancer Center at the
The NLB is currently completing work on the
University of Pennsylvania
· Presented on various patient education topics as
Survivorship Care Plan, their second major paper.
Philadelphia, PA
speakers at twelve IMF myeloma support group
Publication is projected for the second quarter of
Emily McCullagh, RN, NP-C, OCN
conference calls.
2011. The Survivorship Care Plan will cover the key
Memorial Sloan-Kettering Cancer Center
topics of renal complications, sexuality and sexual
· Presented at four IMF Patient & Family Seminars.
New York, NY
dysfunction, bone disease and bone health, functional
· Participated in ten IMF Regional Community
Ann McNeill, RN, MSN, APN-C
mobility and safety, and health maintenance. This
Workshops.
The John Theurer Cancer Center at HUMC
Multiple Myeloma Division
project was initiated at NLB III, a prior assembly of
· Developed and conducted myeloma patient
Hackensack, New Jersey
the NLB membership. On November 6, 2010, the NLB
advisory boards.
Teresa Miceli, RN, BSN, OCN
gathered in Jersey City, NJ, for the sixth meeting of the
Mayo Clinic Rochester
full membership NLB VI. This occasion also marked
After an impressive recap, the group moved forward
Rochester, MN
the fourth anniversary of the Board's inaugural meet-
with its NLB VI agenda. The meeting's first presenta-
Kena C. Miller, RN, MSN, FNP
ing in November 2006.
tion was made by Elizabeth Bilotti, who addressed the
development of an interactive web-based Survivorship
Roswell Park Cancer Institute
NLB members Elizabeth Bilotti, RN, MSN, APRN,
Care Plan Tool to help patients, caregivers, and
Buffalo, NY
BC (John Theurer Cancer Center at HUMC), Teresa
healthcare practitioners improve symptom manage-
Tiffany Richards, MS, ANP, AOCNP
Miceli, RN, BSN, OCN (Mayo Clinic Rochester), and
MD Anderson Cancer Center
ment, decrease patient distress, and enhance patient
Houston, TX
Joseph Tariman, PhC, MN, APRN, BC (Northwestern
quality of life. Next, Joseph Tariman spoke about
University) served as NLB VI Faculty Facilitators.
Sandra Rome, RN, MN, AOCN
clinical trials that are shaping the future landscape of
Cedars-Sinai Medical Center
After an early breakfast, the meeting was convened at
myeloma therapy.
Los Angeles, CA
8:30 a.m. with welcome remarks by Diane Moran, RN,
After a break, Teresa Miceli presented the guidelines
Jacy E. Spong, RN, BSN, OCN
MA, EdM (Sr. Vice President, Strategic Planning, IMF).
for optimal management of transplant patients. Next,
Mayo Clinic - Arizona
Diane continued with an overview and update of IMF
Scottsdale, AZ
Joseph Tariman talked about the structure and scope
program and initiatives. This was followed by a review
of a projected nurse-led clinical research study a
Joseph Tariman,
and update of activities and developments by NLB and
PhC, MN, APRN,BC, OCN, PhD(c)
clinical trial that will focus on a common disease-relat-
University of Washington
its members in 2010:
ed issue. The morning session concluded with a scien-
Seattle, WA
· Authored the FIRST myeloma textbook for nurses,
tific update of myeloma presented by IMF Chairman
Jeanne Westphal, RN
with Joseph D. Tariman as editor. Published by
Dr. Brian G.M. Durie, whose insightful talks are always
Meeker County Memorial Hospital
the ONS, the textbook is being extremely
an essential aspect of NLB gatherings. Dr. Durie
Litchfield, MN
well received.
discussed cutting-edge diagnostic testing for myeloma
CONTINUES ON PAGE 15
800-452-CURE(2873)
13
International Affiliates
UPDATES FROM AROUND THE GLOBE
Myeloma initiatives in Japan
IMF-Japan annual seminar in Toyama
IMF-Japan carries out an extensive program of work on behalf of myeloma
The 2010 IMF-Japan annual seminar on myeloma was held at Toyama
patients in Japan, including regional and national seminars, intervention
International Conference Center in Toyama City, on November 21. More
with health care authorities regarding risk assessment and access to treat-
than 150 patients and family mem-
ment, provision of myeloma publications, an extensive website, and the
bers from all over Japan attended the
issuance of research grants.
educational meeting. Seminar pre-
sentations included a lecture by Dr.
On October 31, IMF-Japan
Shinsuke Iida on the fundamentals of
hosted an extremely suc-
myeloma, talks from the two 2011 Aki
cessful patient and fam-
Award research grant recipients Drs.
ily seminar in Fukuoka,
Hiroshi Yasui and Yusuke Furukawa,
the capital city on Kysh
and breakout sessions by Dr. Chihiro
Island in southern Japan.
Shimazaki and Dr. Akiyoshi Miwa. As a special gift to the medical profes-
The event was attended by
sionals, patients and caregivers expressed their thanks in letters deco-
more than 200 myeloma
ratively arranged on a board as petals of tulips, the popular product of
patients and family mem-
Toyama prefecture. All participants look forward to getting together again
bers. The IMF leadership
Masahiro Fukuda, Dr. Brian GM Durie,
at the 2011 IMF-Japan annual seminar in Tokyo.
was delighted to be able to
Dan Navid, (seated) Midori Horinouchi,
assist in this event.
Susie Novis, Kyoko Joko
IMF co-sponsored activities in Germany
IMF President Susie Novis assisted
IMF Scientific Advisor Dr. Bart Barlogie (Little Rock, AR, USA) is headlin-
in the seminar via an innovative
ing several patient and doctor meetings in Germany, co-sponsored by the
"Talk Show" session, being inter-
IMF in December 2010. IMF Scientific Advisor Dr.
viewed by IMF-Japan Vice President
Hermann Einsele (Würzburg University Clinic,
Kyoko Joko about her personal
Würzburg) is hosting Dr. Barlogie and Dr. Niklas
experience and about the role
Zojer (Wilhelminenhospital, Vienna, Austria) for
of caregivers. IMF Chairman Dr.
an Interactive Patient Seminar on December 18.
Brian Durie joined in an expert
Two days prior to that, Dr. Barlogie will be hosted
panel and delivered a lecture about innovations in myeloma management.
by the Stuttgart Myeloma Support Group and Dr.
International Myeloma Working Group (IMWG) member Dr. Hiroyuki
Hans-Günther Mergenthaler (Karolinenhospital,
Dr. Bart Barlogie
Hata presented
Stuttgart) at a meeting for both patients and doc-
an introductory
tors. In addition, Dr. Barlogie will make presentations for colleagues at the
talk on myeloma
Heidelberg University Clinic in Berlin, and the Münster University Clinic.
and
treatment
Dr. Barlogie studied medicine in Heidelberg and completed his residency
options.
in Münster.
New treatment
Earlier this year, the IMF co-sponsored four patient meetings in Germany.
options
are
Two were held in Berlin and co-sponsored by Elke Schutkowski of the
now becoming
Berlin Myeloma Support Group. On May 9, Dr. Igor-Wolfgang Blau of
increasingly avail-
the Benjamin Franklin campus of Berlin Charité hosted Drs. Einsele, IMF
able in Japan. As part of the IMF Asia Program, work is being pursued
Scientific Advisor Dr. Hartmut Goldschmidt (Heidelberg University Clinic)
with commercial partners in Japan to publicize and promote these new
and Hans Salwender (Hamburg-Altona Asklepios Clinic) for a full day
treatment options, as well as to develop
of lectures and discus-
educational programs for Japanese physi-
sion. on On September
cians in order to enhance application of
5, Dr. Christian Jakob
these treatments.
(St. Hedwig Clinic,
Berlin) hosted IMF
The
convening
of
the
biannual
Scientific
Advisor
International Myeloma Workshop (IMW)
Dr.
Orhan
Sezer
in Kyoto in 2013 will provide an excellent
(Hamburg-Eppendorf
focus for this expanded effort in Japan and
University
Clinic)
throughout the Asian region.
and Dr. Martin Kropff
Dr. Hermann Einsele, Paul Becker,
Editor's Note: For more information, please contact Dan Navid
(Münster University
Dr. Ralph Naumann, Dr. Hartmut Goldschmidt,
at dnavid@myeloma.org or +41-21-825-5546, or Kyoko Joko at
Clinic).
Gregor Brozeit, Dr. Robert Weide,
BZR13060@nifty.ne.jp.
The latest news and
and Harald Eberwein in Koblenz
14
www.myeloma.org
International Affiliates
UPDATES FROM AROUND THE GLOBE -- continued from page 14
studies from the annual
European
Hematology
Association (EHA) con-
gress were highlighted
at a patient meeting
in Koblenz on June 13.
Coming just a day after
the end of the EHA con-
gress, Dr. Ralph Naumann
Dr. Harmut Goldschmidt engages
of Koblenz hosted Drs.
in group discussion at the
Einsele and Goldschmidt
Koblenz patient meeting
as well as Dr. Robert Weide
of Koblenz. The Koblenz
Myeloma Patient Support
Group leaders Paul Becker
and Harald Eberwein co-
Drs. Salwender and Blau speak to patients and caregivers in Berlin
sponsored the meeting.
Albrecht
Reissman,
founder and leader of the
Leipzig Myeloma Support
Group and Dr. Dietger
Niederwieser
(Leipzig
Leipzig Support Group Founder Albrecht
University Clinic) orga-
Reissman moderates questions
nized a patient meeting
at the Leipzig patient meeting
on June 19. In addition to Dr.
Niederwieser, Dr. Wolfram
Pönisch, a member of the
Leipzig faculty who spearhead-
Dr. Martin Kropff addresses
ed many of the key studies on
Dr. Christian Jakob and
Berlin patients and caregivers
Dr. Orhan Sezer take questions
bendamustine, also spoke.
from the audience
Dr. Dietger Niederwieser
Editor's Note: The IMF plans another full slate of meetings in Germany
at the Leipzig patient meeting
for 2011. For more information, please contact Gregor Brozeit at
greg.brozeit@sbcglobal.net.
PACINI / HOPE, STRESS, HOLIDAYS -- continued from page 12
NLB -- continued from page 13
You talk about the Type C personality. Would you explain this to our
and evaluated new anti-myeloma therapies that might be forthcoming in
readers?
the near future.
Everyone has heard about Type A and Type B personalities. Some research-
After lunch, NLB participants separated into several breakout sessions.
ers suggest that there is also a Type C personality, and I've seen this in my
When the membership reassembled, Diane Moran and Taskforce Team
own work. The Type C personality tends to put everybody else first and
Leaders reviewed the future goals of NLB's standing taskforces. More
has a hard time honoring their own needs and asking for help. We need
breakout sessions followed, this time dedicated to taskforce planning. The
to love ourselves first. Being self-loving is not the same as being selfish.
fast-paced changes in the myeloma field require frequent updating of the
When we give to others without attending to our own needs, a level of
existing NLB educational materials, both for nurse and patient audiences.
resentment may build up that can have numerous consequences, includ-
Currently, consideration is also being given to developing a new slide deck
ing taking a toll on our bodies. When we come forward with our needs,
specifically for nurse practitioners. After a brief recap of Day 1 activities,
people may rally to us in ways that we didn't expect. And when our needs
the meeting was adjourned until the next day.
are being met, service to others flows without effort.
Day 2 started with a question and answer session about the prior day's
Any closing comments?
activities. After breakout sessions to discuss NLB project initiatives, Team
I wish your readers well, and I hope that the concepts I've shared will help
Leaders reported on progress to the fully assembled participants. Standing
support them through the holidays and beyond. MT
Status was reported by Taskforce Leaders and, after final remarks by Diane
Moran about NLB VI accomplishments and future steps, the very produc-
tive meeting came to a close. MT
800-452-CURE(2873)
15
Education & Awareness
SPOTLIGHT ON ADVOCACY
By Christine Murphy
Wrap up of IMF
Health insurance reform signed into law
advocacy priorities
The Patient Protection and Affordable Care Act transforms significant por-
Below is a summary of some of the legisla-
tions of the health care environment. Below are the provisions that will
tive issues the IMF followed in 2010. As
improve the quality of life for all myeloma patients.
you can see, we were successful on many
important issues, such as ensuring access
1. Access to Clinical Trials - Health insurance plans are required to provide
to clinical trials and declaring September
coverage for routine costs associated with participation in clinical trials.
Blood Cancer Awareness Month. Over
This was a huge win for myeloma patients as many patients have had to
3,000 messages were sent to Congress
decline participation in trials due to plans refusing to pay for the same
this year from myeloma advocates. Your
costs they would reimburse for a patient that is going through non-clinical
commitment to the mission helped to
trial treatment.
ensure our success on many legislative issues in 2010 and IMF thanks you
2. Eliminates the Medicare "donut hole" - The bill provides a $250 rebate
for all of your efforts on behalf of myeloma patients.
to Medicare beneficiaries who reach the Part D coverage gap in 2010.
The beneficiary coinsurance rate in the Medicare Part D coverage gap
September designated
is gradually phased down from 100% to 25% by 2020. For brand-name
as Blood Cancer Awareness Month
drugs, pharmaceutical manufacturers will provide a 50% discount on pre-
Representatives Walther Jones (R-NC) and Betsy Markey (D-CO) spon-
scriptions filled in the Medicare Part D coverage gap beginning in 2011,
sored a resolution (H. Res. 1433) designating September 2010 as Blood
in addition to federal subsidies of 25% of the brand-name drug cost by
Cancer Awareness Month. H. Res. 1433 highlighted the impact that the
2020 (phased in beginning in 2013). For generic drugs, manufacturers
blood cancers have in the United States each year and encouraged greater
will provide federal subsidies of 75% of the generic drug cost by 2020 for
support for blood cancer research and education. Because of the efforts
prescriptions filled in the Medicare Part D coverage gap (phased in begin-
of IMF advocates, we met our goal of obtaining at least 100 cosponsors
ning in 2011). Finally, the bill will reduce the out-of pocket amount that
to ensure that the resolution moved through the legislative process and
qualifies an enrollee for catastrophic coverage.
ultimately passed the House.
3. Eliminates Annual and Lifetime Caps on Insurance Coverage - Lifetime
President signs Improving Access
limits are eliminated in all health insurance. Annual limits are restricted in
to Clinical Trials Act
new plans until 2014, after which they would be prohibited in all health
insurance plans.
On October 5th, the President signed the Improving Access to Clinical
Trials Act (HR 2866/S 1674) into law. This important legislation changes
4. Eliminates "Pre-Existing Conditions" as a Barrier to Health Insurance -
the eligibility requirements for Supplemental Security Income (SSI) and
This year children with pre-existing conditions can no longer be denied
Medicaid so that compensation of up to $2,000 for participating in clinical
health insurance coverage. Beginning in 2014, pre-existing condition
trials won't be considered income in SSI and Medicaid determinations.
discrimination will become a thing of the past for everyone with health
The IMF Advocacy Voice Get Fired Up! Raise Your Voice! Get Out There and Take Action!
Introducing the all NEW A.C.E. training program!
The IMF's new and improved A.C.E. training program Advocates
To find out how you can become an A.C.E. Advocate and to learn about
for Cancer policy Education is designed for everyone. Choose an
the advocate levels, please visit our new A.C.E. webpage by clicking the
activity level that matches your personality and schedule. Learn when
Advocacy tab at www.myeloma.org.
to act, what to say, who to contact, why it's important, and how to go
Take the first step and sign up NOW for the Myeloma Action Network to
about making a difference. The IMF Advocacy Team will provide you
stay informed of critical issues affecting the myeloma community. Visit
with the tools and preparation you need to help fight for issues that
www.advocacy.myeloma.org
affect YOU and the myeloma community.
Level 1:
Level 2:
Level 3:
Grassroots Guru
Meeting Master
All-Star Advocate
16
www.myeloma.org
Education & Awareness
insurance including myeloma patients. Additionally, adults who are unin-
Institutes of Health (NIH), the National Cancer Institute (NCI), and the
sured because of pre-existing conditions now have access to affordable
Centers for Disease Control and Prevention (CDC) all received increases
insurance through a temporary subsidized high-risk pool.
in funding. In the House LHHS bill, the NIH received $32 billion (a $1
The IMF honored in the congressional record
billion increase over FY 2010). The NCI was allocated $5.265 billion, $162
million more than FY 2010. The Senate LHHS Appropriations bill included
Representative Brian Higgins (D-NY ) honored the work of the IMF and
the same allocation for the NIH as the House bill. The Senate allocation
raised awareness of multiple myeloma through his statement in the May
for the NCI is $5.257 million. This amount is $153 million above the FY
25th edition of the Congressional Record. Representative Higgins stated
2010 funding level. For the Geraldine Ferraro Blood Cancer Program at
what myeloma is, who is affected, and its prevalence in the statement. He
the CDC, the Senate included $5 million for the program in FY 2011 (an
recognized the IMF for its dedication to improving the quality of life for
increase of $300,000). It is unclear if these programmatic increases will
patients and caregivers while working toward prevention and cure for
hold as the FY 2011 appropriations process continues to drag into the
myeloma. He also noted his bill, the Cancer Drug Coverage Parity Act (HR
lame duck session and potentially into the New Year..
2366), which eliminates disparities for cancer patients whose insurance
MT
coverage has differences in the way oral and intravenous chemotherapy
therapies are covered. The IMF has been proactively involved in helping
How to contact the IMF Advocacy Team
to fight for this legislation.
Christine Murphy Director, Government Relations
Final FY 2011 cancer funding on hold
Phone: 703-738-1498 Fax: 703-349-5879
Email: cmurphy@myeloma.org
until after 2010 elections
At the time of writing this article, fiscal year (FY ) 2011 funding for cancer
programs has not yet been finalized. A Continuing Resolution (CR) that
Arin Assero Director of Advocacy
Phone: 800-452-CURE (2873) ext. 232 Fax: 818-487-7454
allows the federal government to continue functioning, largely at cur-
Email: aassero@myeloma.org
rent spending levels, is in effect until lawmakers rejoin the battle over
FY 2011 appropriations. Congress is expected to continue debate on
FY 2011 appropriations when they return for a lame duck session on
Meghan Buzby Advocacy Grasroots Liaison
November 15th.
Phone: 410-252-3457
Email: mbuzby@myeloma.org
In both the House and Senate versions of the Labor, Health and Human
Services, and Education (LHHS) Appropriations bills, the National
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
Go to our website
Regional Community Workshops (RCW)
www.myeloma.org
If you cannot get to a P&F Seminar, consider attending a
and click on the
Regional Community Workshop. These half-day meetings
"meetings & events"tab
provide Education, Access to Experts, and Camaraderie.
Registration is free but you must register. It's a great way to
for more details, the most
learn from myeloma experts, as well as share experiences and
up-to-date faculty, hotels
gain strength from others in the IMF family. Find more details
and registration information.
about the next RCW near you at our website.
800-452-CURE(2873)
17
Patient & Caregiver Experience
A WONDERFUL SUCCESS STORY... 8 YEARS AND COUNTING
By Robert Reeves
I was diagnosed with myeloma in September 2002,
low ever since. In 2006 or 2007, I was once again
at age 72. My family and I were in shock and won-
talking with the IMF Hotline Coordinators and they
dered what the future would be like. One of my sons
asked about my light chains, which I knew nothing
reached out to the IMF for a packet of information
about. Measuring light chains was not part of my
that we found to be most educational.
routine blood work. The test was performed after
a discussion with my doctor and we discovered the
A tumor was found on my C2 vertebra. After several
lambda free light chains were high and the kappa
treatments, the doctors became concerned because
free low. The levels ranged from 100 to 400 for
the tumor had destroyed a part of that vertebra.
several years yet it was felt that no treatment was
Radiation was halted and surgery performed a
required because every 6 months CT scans were
metal plate was installed on the back of my head
being performed of my spine, chest, abdomen, and
with rods down my neck that were attached to other
pelvis, and everything was stable. In 2007 and 2008,
fused vertebra. Radiation was resumed after the
I grew a tumor on both a rib and my sternum, and
surgery, and I completed a total of 26 treatments.
was treated with radiation. In February 2008, my
I have been an athlete all my life and my latest pas-
wonderful wife of 54 years died with a brain tumor.
sions were running and cycling. One of the events I
In January 2010, a CT scan showed tumors in my
really enjoyed was the MS150 bike ride (75 miles a
lumbar and thoracic areas. I was hospitalized, and
day for 2 days for a total of 150 miles cycled) to raise
a decision was made to treat the tumors with radia-
money for multiple sclerosis research. In September
tion. During treatment, more tumors were discov-
2003, I did the South Carolina MS150, riding from
ered on my right shoulder and the back of my head.
Columbia to Myrtle Beach. My wonderful wife
The shoulder was treated with radiation but the
insisted that I take it easy, so I only cycled 50 miles
head was not because of the brain. It was also sug-
per day. I wore a neck brace part of the time, but I
gested that, if I am growing tumors, the light chain
completed the 150.
should be treated. I discussed my situation with IMF
Following the radiation therapy, Zometa® infusions
Hotline Coordinator Paul Hewitt, who confirmed
were begun (and have continued to this day). My
that treatment was necessary.
M-protein levels were monitored, and remained high, but my oncologist
In March 2010, bortezomib (Velcade®) treatment was begun. After the
did not think additional treatment was required at that time. I continued
second dose (2.5 mg), I was very sick for a week. However, the light
to keep in contact with the IMF, especially Hotline Coordinators Nancy
chain measurement went from 383 to 53, so my response to the drug was
Baxter and Debbie Birns, to make sure that my treatment plan made
excellent. Treatment was resumed in April at the lower dosage of 1.4 mg,
sense. When my M-protein levels began increasing in September 2003, the
administered twice a week for two weeks, followed by a week off, and I
doctors recommended a VAD treatment plan. I called the IMF and learned
had very little adverse reaction at that dosage. After about 8 weeks, the
about dexamethasone plus thalidomide as a potential solution, and that is
tumor on the back of my head was gone, leaving a sunk-in place but it is
what we went with. While a 54% decrease in the mutated M-protein was
not a problem. The light chains have continually gone down and are now
achieved in the first month, when the thalidomide dosage reached 200
at 3.1 (as of November 19). For me, bortezomib has been very effective.
mg per day, the peripheral neuropathy (PN) got very bad. As a result, the
thalidomide dosage was gradually reduced to 50 mg during the second
I have been very fortunate, and I hope that what has helped me on my
month. At the lower dosage, I had no PN while the treatment remained
journey might also be of benefit to you:
just as effective.
1. Since my diagnosis, I have relied on all the programs and services
On July 1, 2004,
provided by the IMF. The published materials are excellent and the
at age 74, I had
personal contact with the Hotline Coordinators has been invaluable,
a stem cell trans-
and I know that the IMF and the Hotline could not exist without all the
plant. At that hos-
doctors, researchers, and other staff involved. Thank God for all those
pital, I was the
wonderful people. When a cure is found it will be because of their
oldest person to
dedication and hard work.
receive a trans-
2. I have doctors who work with me in adjusting the treatment plans
plant for myelo-
so they meet my needs. I've consulted with a myeloma specialist and
ma. The results
communicate freely with my healthcare team, asking questions and
were excellent,
expressing my preferences.
and my M-protein
Robert Reeves (center) with his daughter and at friend levels have been
at a 50-mile bike ride to aid the homeless.
CONTINUES ON NEXT PAGE
18
www.myeloma.org
Support Groups
PEOPLE HELPING PEOPLE
You are never alone in your bat le against myeloma
The Delaware & Neighboring Maryland Multiple Myeloma Support & Networking Group
Josephine C. Diagonale had microscopic hema-
Earlier this year, Josephine decided that
turia, the presence of blood cells in the urine.
it was time to offer to others the support
In November 2007, her urologist recommend-
that has been of benefit to her. "After liv-
ed a CT scan, which revealed bone lesions.
ing with myeloma for three years, I have
Josephine and her husband, Jim Mulvihil ,
reached the point of being comfortable with
turned to the Internet and discovered myeloma
going public, and I have experience and
as a potential cause of Josephine's test results.
a skill set that can be of service to oth-
This was confirmed by the oncologist.
ers." Josephine will lead the newly founded
Delaware & Neighboring Maryland Multiple
Jim is a retired research scientist (chemistry)
Myeloma Support & Networking Group,
and is currently working in anthropological
beginning with the group's first meeting on
genetics as an avocation, and Josephine is a
January 15, 2011.
former educator who has her own business in
consulting and management development. In
"Our first meeting will be in the format of
addition, Josephine had been facilitating medi-
an open discussion, with an opportunity to
tation classes, including at the local Wellness
introduce ourselves to one another and to
Center, and has been working in what is often
discuss the mission of the group. Certainly,
referred to as the energy awareness and healing
education will be a major aspect of the group
field for the past 12 years.
Josephine C. Diagonale & Jim Mulvihill
as we move forward, with several speakers
already confirmed for future meetings, but our purpose is to be there
"Given our backgrounds, the myeloma diagnosis did not come as a sur-
for each other in emotional ways, too. The group will be a supportive
prise to me and my husband. What was a surprise was the dexamethasone!
forum to share our stories. After all, myeloma is not the only thing that
It was part of my frontline therapy, along with lenalidomide (Revlimid®),"
defines us."
says Josephine. "We've done a lot of reading on myeloma the IMF edu-
cational materials are terrific! and we pretty much knew what to expect
Starting January 15, 2011, the Delaware & Neighboring Maryland Multiple
every step of the way. But with myeloma there are always surprises. So,
Myeloma Support & Networking Group will meet on the third Saturday
in essence, I quickly formed my own `support group': My husband has
of each month from 1:30 p.m. to 3:30 p.m. at The Eden Hill Medical
been enormously helpful, both emotionally and in terms of contributing
Center, 3rd floor conference room, 200 Banning Street (off Rt. 8), Dover,
a wealth of scientific knowledge, and I have a wonderful oncologist who
DE 19904. For more information, please contact Josephine C. Diagonale
listens to me. I work with alternative healthcare practitioners. My close
at mmsupportde@comcast.net or 302-233-8229. We hope to see
friends and colleagues have been supportive."
you there! MT
REEVES / SUCCESS STORY -- continued from page 13
3. Numerous experiences with the medical advice and
of the way. In fact I owe my life to the surgeon,
treatment I have received, as well as the information
oncologists, radiologists, nurses, technicians, and oth-
provided by the IMF, have made me realize how
ers who have cared for me during the last 8 years.
essential it is for patients to be proactive about their
And to live in a country where all this is possible
medical options. I know that the medical profession-
is awesome!
als do the best they can, but patients need to educate
I am very fortunate to have responded well to the
ourselves to keep up with what is happening.
treatments I have received. I continue to do my best to
4. As myeloma patients, we all have our moments of
take good care of myself. I usually walk 3-5 miles a day,
struggle. As difficult as it may be at times, I believe
and ride the stationary bike in my basement 8-12 miles
it is essential to try to find and maintain a positive
(as I have not ridden outside this year because of the
outlook.
concern of what a fall might do). My adventure with
myeloma continues and, while this is most definitely
This story would not have been possible without the
a challenging journey, LIFE IS STILL GOOD.
dedication, skills, and caring attitude of the medi-
MT
Robert Reeves in 2004 at age 74,
cal professionals who have been with me every step
shortly after a stem cell transplant
800-452-CURE(2873)
19
Member Events
IMF MEMBERS RAISE FUNDS TO BENEFIT MYELOMA COMMUNITY
By Suzanne Battaglia
In 2010, the IMF is
organizing an event in your community, you
time, imagination, and hard
proud to mark its
are also raising public awareness and helping
work to benefit the myeloma
20-year anniversary
those whose lives have been touched by this
community. Our FUNdraising
of service to the
disease. You want to do something in your
program provides you with
myeloma community.
community, but deciding on what to do and
the tools, assistance, and expertise to make your
Our membership is
how to do it can be confusing. That's where we
event a success. Choose an established event
a network of people
come in! The IMF's Fundraising program is here
model or create your own no idea is too
like you, from across
to help you every step of the way. We make it as
large or too small. Join us in working together
the country and around the globe. Many IMF
easy as possible for you to be involved, whether
toward our common goal... a CURE. Please
members are raising money for myeloma
or not you have any previous experience with
contact me, Suzanne Battaglia, at sbattaglia@
research and educational programs that have
such activities.
myeloma.org or 800-452-CURE (2873). I am here
an impact on the lives of patients and family
to chat with you about any ideas you might
FUNdraising is fun and easy to do, and brings
members worldwide.
have. Be part of making miracles happen!
with it the satisfaction of knowing that YOU
Being involved is very fulfilling and empowering.
have made a difference in many lives. We are
Here is just a sampling of some past and
Join us in our search for a cure for myeloma. By
grateful to all IMFers who contribute their
upcoming events...
A Celebration of Life at Kasbah
two dynamic women whose
On October 20, A Celebration
husbands live with myeloma,
of Life at Kasbah honored the
brings together the local phil-
lives of three myeloma survi-
anthropic community for a
vors Neil Hamburger (diag-
lovely afternoon reception,
nosed February 1999), Spencer
high tea service, a guest speak-
Rubin (diagnosed February
er, and opportunity drawings.
2008), and IMF Board member
In addition to being exception-
Al an M. Weinstein (diagnosed
ally successful at raising funds Carol Klein, Emme, and Nancy Moses
September 2002), all friends or
for myeloma research, Carol and Nancy continue to be highly successful
family of Nancy Nashban, who helped organize the evening. Held at
at increasing awareness of myeloma by garnering local press coverage and
the Intercontinental Montelucia Resort & Spa in Paradise Valley, AZ,
by educating more and more people about the disease at each event. This
the event's Andalusian/Moroccan theme was inspired by the venue's
year's Afternoon Tea special guest was Emme, the plus-size supermodel
gorgeous style.
and lymphoma
The evening featured cocktails, tapas,
survivor,
who
a Mediterranean buffet, live music, and
spoke from the
Flamenco and belly dancers. Plus, a silent
heart about her
auction offered guests an opportunity to
experience with
win some amazing prizes. Each of the hon-
cancer.
orees spoke to the crowd, sharing his per-
To date, almost
sonal story of survival. "It was a spectacular
700 women have
event, at a fantastic venue, with great food,
(l to r) Elaine Stein, Judy Lapidus, Judy Goozh,
attended
the
Benson Klein, Beverly Kressin, and Penny Bender
and terrific continuous entertainment," said
Afternoon Tea to
Phyllis & Allan M. Weinstein Allan. "We had close to 150 guests, many of
share the camaraderie, learn about myeloma, and maybe even go home
whom told me it was the best event they had attended. Everyone enjoyed
with one of the donated luxury
the party, and we were able to raise myeloma awareness while raising a
prizes from the event's opportunity
lot of money for the IMF."
drawing. Thanks to the generosity of
Afternoon Tea
sponsors and participants, the 2010
Afternoon Tea event raised $40,000
On October 3, co-chairs Carol Klein and Nancy Moses hosted their fourth
to continue its tradition of support-
Afternoon Tea at The Four Seasons Hotel in Washington, DC. The popular
ing significant myeloma research
event, organized in support of the IMF's myeloma research programs by
through the IMF's grants program.
(l to r) Michelle Napoli,
Laura Napoli, Lori Klein, and
Abby Napoli
20
www.myeloma.org
Member Events
Casual Week at Blue Shield
Casual Day in LA
Susan Snook, who works in the small groups
Carol Yee is not a myeloma patient. She
department of Blue Shield, was diagnosed with
is not a myeloma caregiver either. In
myeloma in 2009. A few months after her diag-
fact, when she first learned about the
nosis, she attended an IMF Patient & Family
IMF and its programs and services, she
Seminar and experienced for herself that the
had never known anyone with myeloma.
work of the IMF is closely related to her own
Carol found out about myeloma and the
interest in promoting myeloma awareness and
work of the Foundation from an IMF
raising funds for research to help find a cure. Fortunately, Blue Shield is
staffer who attends the same exercise
always supportive of its employees' fundraising efforts on behalf of a good
facility. "I was so impressed with the IMF
cause, offering matched (and doubled!) contribution for every dollar their
that I wanted to find some way to be of
employees raise for an organization of their choice.
help to the organization and the people it serves," says Carol. "I started
doing some volunteer work for the IMF, including at its annual Gala, and
Su decided to coordinate a Casual Week, and was very gratified to see
I found the experience so gratifying that I wanted to organize an event
more than 30 coworkers sign up to contribute $10 each in order to be able
of my own to raise funds for myeloma research. I work in the investment
to dress casually for the entire work week. During her fundraising event,
field, and my company has a Casual Day program, so this was the natural
Su also sold IMF burgundy bracelets and distributed informative TipCards
choice for my first fundraiser. Participants were asked to donate at least
about the IMF and myeloma. After Blue Shield contributed $20 for each of
$10 and up and, in the end, we were able to make a nice contribution to
Su's Casual Week participants, Su's final fundraising tally exceeded $1000!
the IMF. I feel so strongly that whenever you have an opportunity to be
"Having myeloma has been a very difficult experience, but everyone at
helpful, and are capable of doing so, that's exactly what you should do.
work has been very supportive," says Su. "Of course, I don't know how
You don't need to know someone with myeloma to want to help people
I would get through any of this without the help of my family. I am very
who are battling this disease." MT
thankful for all the help and support I continue to receive from those
around me. And I just try to do my part in spreading myeloma awareness,
and sharing the message with my fellow cancer patients to never give up!"
Making your holiday gift list?
Double your dollars with every purchase at the 2010 IMF Holiday Boutique. With every gift
you buy, you make a donation to the IMF to support myeloma education, research, support and
advocacy. Two gifts in one! It's easy to find the Holiday Gift Boutique on our website.
Do you have
a question?
Perhaps you would like to order
a publication? Are you thinking
about registering for a Patient
and Family Seminar or Regional
Community Workshop? Would you
like to download the Myeloma
ManagerTM? All this and MORE is
possible on the IMF website.
www.myeloma.org.
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
2011 IMF Calendar of Events
Feb 7
IMF Patient & Family Seminar Barcelona, SPAIN
June 8
Robert A. Kyle Lifetime Achievement Award Dinner London, UK
Feb 25-26
IMF Patient & Family Seminar Boca Raton, FL
June 9-12
European Hematology Association (EHA) London, UK
Mar 11-12
IMF Patient & Family Seminar San Francisco, CA
June 10-11 Eastern Cooperative Oncology Group (ECOG) Boston, MA
April 13-16
Southwest Oncology Group (SWOG) San Francisco, CA
July 15-16
IMF Patient & Family Seminar Dal as, TX
Apr 28-May 1 Oncology Nursing Society (ONS) San Diego, CA
July 29-31 IMF Support Group Leaders' Summit Dal as, TX
May 3-6
International Myeloma Workshop (IMW) 13 Paris, FRANCE
Aug 26-27
IMF Patient & Family Seminar Philadelphia, PA
June 3-7
American Society of Clinical Oncology (ASCO) Chicago, IL
Oct 12-15
Southwest Oncology Group (SWOG) Chicago, IL
June 7-9
International Myeloma Working Group (IMWG) Summit I
Dec 9-13
American Society of Hematology (ASH) San Diego, CA
London, UK
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.