1. health and fitness
2. disease
3. cancer

Forum
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www.clfoundation.org
Summer 2013
How to Live a Life of Joy
Tena Brown
INSIDE THIS ISSUE
From the President and the Chief
Executive Officer .............................. 2
DC Patient Networking Group ........ 3
Tena Brown is a
patient advocate,
consultant,
inspirational
speaker, author
and teacher.
Alive with Mycosis Fungoides:
A Patient’s Perspective: Jan Paro........ 4
A Caregiver’s Story:
Meredith Haab........................... ........ 5
2-Day Cutaneous Lymphoma
Patient Conference Highlights.......... 6
Patient Educational Opportunities ...... 8
One Voice Against Cancer Lobby
Day 2013............................................. 9
Scientific Meetings Recap................10
Get Involved..................................... 12
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
email: [email protected]
www.clfoundation.org
Forum is published by the
Cutaneous Lymphoma Foundation.
Disclaimer
The Cutaneous Lymphoma Foundation does
not endorse any drugs, treatments or products
reported in this newsletter. Information is provided for informational purposes only. Because
the symptoms and severity of cutaneous lymphoma vary among individuals, the Cutaneous
Lymphoma Foundation recommends that all
drugs and treatments be discussed with the
reader’s physician(s) for proper evaluation,
treatment and medical care.
Throughout my life, I have witnessed
so many
people being afraid of their
greatness. In fact, they fear greatness
more than they fear being ordinary!
I love this quote by Bill Cosby,
“Decide that you want it more than
you are afraid of it!”
Whether what we want is a new
relationship, a successful career, better
health or just a better life, we still have
to make a decision to do so. Too many
people let fear run their lives instead
of pursuing the powerful life that they
desire. My favorite conversation to
have with folks is how to improve
their quality of life. Let’s face it; if
you have a chronic or rare disease,
it’s an even greater challenge to “live
your best life.” That’s why we need to
do all we can as patients to empower
ourselves and ensure that we have the
best care possible.
Living with Psoriasis/Psoriatic arthritis
for over 42 years, both chronic and
debilitating diseases, has taught me a
lot about how to live a life of joy. It
has taught me how to persevere and
overcome challenges, how to be my
own advocate and has helped me to
develop a strong “empathy” muscle for
dealing with people. More importantly,
it has taught me that my disease does
not define me. I have a disease, but it
doesn’t have me! My goal has always
been to live a life that I love and live
it passionately. Chronic daily pain
has forced me to become mentally,
emotionally and empathically strong.
I now teach others how to advocate
for themselves and how to live
passionately in spite of the challenges
that they face. We are always our own
best advocate.
So how do you live your best life with
a rare and chronic disease? As Bill
Cosby says, you have to “decide” that
you want it (your best life) more than
you are afraid of it.
Awareness of your condition is vital.
Finding the right “team” to assist and
support you is the foundation that
you need to navigate the rough waters
you face. Studies show that when
you have a disease that “shows,” the
emotional and psychological aspect
is much greater than having a disease
that other people cannot see. This is
why we need kind, caring people on
our team and in our lives. Lastly, we
have to persevere, which I believe
is the key to living an empowered
life. All of us have days that we are
sad, depressed, frustrated, lonely and
negative. However, becoming mentally
strong is your greatest source of power
and strength.
Awareness:
Awareness of the disease is very
empowering. We learn that we are
not alone: that there is hope, that
there are caring people helping to
find a cure, treatments and options.
Being diagnosed with a rare disease is
overwhelming. You don’t know where
to begin to process it emotionally,
or how to navigate an entirely new
reality. I encourage people to seek
knowledge and education. Be open to
alternative therapies. Talk to others
How to Live With Joy...continued on page 11
Cutaneous Lymphoma Foundation
From the President
From the Chief Executive Officer
As we roll into the dog days of
summer with vacations, longer days
and warm temperatures (at least for us
in the US) we at the CLF are taking
a few deep breaths too. It has been
a busy spring, filled with medical
meetings and patient educational
events, ending with our first ever 2-day
patient conference in Philadelphia on
June 29 and 30.
Quality Assurance
It is very fitting to have this issue
of the Forum focus on quality
of life, a term that has grown to
represent the patient experience,
as told by patients. Fifteen years
ago, it was Judy Jones’ personal
journey with cutaneous T-cell
lymphoma (CTCL) that lead
to the Cutaneous Lymphoma
Stuart R. Lessin, M.D. Foundation’s establishment, and
the patient experience lies at the
heart of the Foundation’s mission.
The first collaborative effort of the Foundation with the
medical community started in 2005 with a quality of life
survey of the Foundation’s membership. This landmark study
was lead by Dr. Marie-France Demierre, who collected data
from patient questionnaires and demonstrated that patients
believed CTCL had a profound impact on their functioning,
emotional, and social well being. It was the first medical paper
to document the patient experience using data reported by
patients with CTCL.* Since then, quality of life surveys have
been included in clinical trials testing new CTCL drugs so that
we can learn how well a new drug treats the lymphoma as well
as how it effects the well being of those taking the drug.
Recently, the Foundation held its first two-day Patient
Education Forum, June 29-30, 2013 in Philadelphia. The
expanded format featured new programs focused on improving
quality of life. These included nutrition, integrative medicine
and insurance, along with programs for veterans and young
patients.
Looking ahead, watch for the launch of the Cutaneous
Lymphoma Foundation’s web-based patient registry. It is the
first step in the Foundation’s ambitious plan to develop an
online platform for patient reported outcomes. Online patient
reported outcomes are quickly changing the landscape of
medical research. Technological advances are offering new
opportunities for patients to participate in collaborative efforts
with scientists and physicians in ultimately improving quality
of life.
It’s an incredibly exciting time as the Cutaneous Lymphoma
Foundation continues its growth and expands its capacity
to have a positive impact on people’s quality of life. I hope
you will be able to continue to join me in supporting the
Foundation and its work toward quality assurance.
*Demierre MF, Gan S, Jones J, Miller DR. Significant impact of
cutaneous T-cell lymphoma on patients’ quality of life: results of a 2005
National Cutaneous Lymphoma Foundation Survey. Cancer 2006;
107(10): 2504-11.
2
Susan Thornton
As many of you know, the 2-day event
was something I wanted to add to our program calendar since
taking on the leadership role last summer. To be honest, there
were many days when I questioned my sanity of adding an
event of this magnitude. But now, having experienced the event,
meeting everyone who attended, and listening to the speakers, I
can say I’m thrilled we put it on the calendar.
Although our one-day patient events are terrific and provide
an opportunity for you to learn from experts in the field and
meet your fellow cutaneous lymphoma adventurers, there never
is enough time to talk about the other challenges that we face
living life with cutaneous lymphoma. We wanted to explore
topics like nutrition - always a hot one, and navigating the
very complex insurance and reimbursement system, which can
frustrate even the calmest among us. From the feedback we
received over the weekend and in the evaluations, it sounds
like we met your expectations. Thank you to everyone who was
able to join us. We also held our first ever silent auction and
cocktail reception on Saturday evening. You can enjoy some
of the highlights of the event in this edition. We hope everyone
will try and attend next year in Kansas City. It will be the last
weekend in June, so mark your calendars now.
For everyone who could not join us, we captured the clinical
presentations and some additional Q&A from our speakers
on video and will be uploading them soon to our new Online
Learning Center. Check the website in a few months and let us
know what you think. We welcome your feedback on the topics
and presentations you would like to see captured in the future.
Our goal is to provide you with information you need and can
use in an accessible format.
While the team here closes our fiscal year over the summer, we
look forward to the fall and spring programs and hope to see
many of you in person. In the meantime, enjoy the information
and stories in this newsletter and drop us a note to let us know
what else you would like to see us cover.
It’s going to be a terrific year with additions to our programs
and services - keep your eyes open for announcements. Check
out the Online Learning Center when you get a chance and give
us your feedback on what else the CLF can do to help you live
your life vibrantly, fully and with zest!
Forum, Summer 2013
Forum
The newsletter of the Cutaneous Lymphoma Foundation
ALL RIGHTS RESERVED
MEDICAL EDITOR
Stuart Lessin, M.D.
Cutaneous Lymphoma Foundation is a 501(c)(3) non-profit organization. Donations are tax deductible to the extent allowed by law.
BOARD OF DIRECTORS
OFFICERS
Stuart Lessin, M.D.
Marianne Tawa, MSN, RN, ANP
Jeff Ward
Laurel Carlson
President
Vice President
Treasurer
Secretary
DIRECTORS
Joseph Eischens
Brace Krag
David Lamb
Pierluigi Porcu, M.D.
Christopher Shipp
Michael W. Young
Director
Director
Director
Director
Director
Director
MEDICAL ADVISORY BOARD
Thomas Anderson, M.D. University of Michigan
Kevin Cooper, M.D. Case Western Reserve University
Madeleine Duvic, M.D. MD Anderson Cancer Center
Francine Foss, M.D. Yale University School of Medicine
Lars French, M.D. Geneva Medical Center
Sam Hwang, M.D., Ph.D. The Medical College of Wisconsin
Robert Knobler, M.D. University of Vienna
Thomas Kupper, M.D. Brigham and Women’s Hospital
Liliane Laroche, M.D. University of Paris
Sue McCann, MSN, RN University of Pittsburgh Medical Center
Lauren Pinter-Brown, M.D. UCLA Medical Center
Washington, DC Area Patient/
Caregiver Networking Group Formed
A group of eighteen CTCL patients and caregivers from
the DC/MD/VA area met on April 18th at the Thomas
Jefferson Public Library in Falls Church, VA. Using the
CLF’s database, Facebook, and the CTCL-MF listserv,
interested individuals were invited to attend and discuss
any and all issues pertinent to them and their disease.
The idea of organizing a DC area group was the dream
of CLF Board member Laurel Carlson, a CTCL patient
for over 30 years who felt that, “the need for us to have
our own support group is just as important as for anyone
else with a cancer – maybe even more important since on
our own, we rarely find someone who is familiar with our
disease.”
The response of those who attended was very positive,
and all agreed to continue to meet on a quarterly basis.
For more information about this group and their meeting
schedule, contact the Cutaneous Lymphoma Foundation at
248.644.9014, ext. 1 or at [email protected].
What Is Cutaneous Lymphoma?
Cutaneous lymphomas are cancers of lymphocytes (white
blood cells) that primarily involve the skin. Classification
is based on lymphocyte type: B-lymphocytes (B-cell) or
T-lymphocytes (T-cell).
Cutaneous T-cell lymphoma (CTCL) is the most
common type of cutaneous lymphoma that typically
presents with red, scaly patches or thickened plaques
of skin that often mimic eczema or chronic dermatitis.
Progression from limited skin involvement is variable
and may be accompanied by tumor formation, ulceration
and exfoliation, complicated by itching and infections.
Advanced stages are defined by involvement of lymph
nodes, peripheral blood, and internal organs.
David Ramsay, M.D. New York University
Alain Rook, M.D. University of Pennsylvania
Steven T. Rosen, M.D. Northwestern University
Martin Weinstock, M.D., Ph.D. Brown University
Sean Whittaker, M.D., MRCP Guys & St. Thomas Hospital
Lynn Wilson, M. D., MPH Yale University School of Medicine
The Cutaneous Lymphoma Foundation’s patient
educational newsletter, Forum, has been
made possible thanks to the following
generous supporters:
STAFF
Kira Mann Director of Development and Marketing
Holly Priebe Chief Operating and Financial Officer
Susan Thornton Chief Executive Officer
Deb Van Zegeren Administrative and Communications Manager
3
Cutaneous Lymphoma Foundation
Alive With Mycosis Fungoides - A Patient’s Perspective
Jan Paro
Westlake, LA
Even the computer doesn’t
recognize Mycosis Fungoides.
A wavy red line under it says it
is odd, unusual, and not easily
recognizable. It is that very fact
that makes it imperative for a
physician to have those “eagle
Jan Paro
eyes” that recognize the peculiar
kidney bean shape, the cigarette paper thin skin texture,
the odd red/brown/purple color. The first two doctors who
saw it on my backside didn’t, and so, I dismissed it. “What
could that be? Aha, just a rash from yard work, maybe?” I
was my own worst enemy. The queen of denial. That was
in September of 1990. Life was extremely busy and more
important things were happening, and as time passed, the
‘spot’ hadn’t really changed.
In 1993, I ended my career running
paint and body shops, moved from
Texas to Florida and started a new
career in human resources. I even
married again. Life was good! That is,
until my twin sister became terminal
with a constellation of complications
from Type II juvenile diabetes.
I made an appointment with Dr. Michael Cormier, affiliated
with Moss Regional Medical Center. Dr. Cormier was a
certified “eagle-eye” dermatologist. He is my hero! I knew
something wasn’t right by his arched eyebrow. All I heard
were the word “biopsy” and something about a cutaneous
T-cell lymphoma.
The biopsy proved Dr. Cormier’s suspicions to be true. I
had “won” the rare cancer that involved skin and blood…
dang! I then transferred to oncologist D. John Gaharan. We
tried sunlight, triamcinolone creams and going naked. At
62, that was a hard Rx to take!
I read and learned to dig deeper on words I’d never heard
before until the day I bravely typed ‘lymphoma’ in the
internet search field. It came back with the National
Cancer Institute and contact information for several
lymphoma foundations. I left messages with two of
them and halfheartedly dialed the Cutaneous Lymphoma
Foundation’s number. To my surprise,
CEO Susan Thornton answered - from
an airport - God does provide miracles!
We didn’t “speak,” we talked. She
I felt like my skin
shared information on resources for
support and for research. I realized my
on my lower back
ignorance had lead to fear. This was my
fight, but I quickly realized I had an
had become a
“army” in my corner!
popcorn factory with
When no real progress had occurred
To spend as much time with my sister
firecracker kernels.
for a time, my next treatment option
as possible, I became a long distance
was chemo. I was put on Targretin,
driver from the Florida Panhandle
an oral Bexarotene, at 7 capsules a
to Austin, Texas on a monthly basis.
day. This was an intense dose, but we
Truckers likely still talk about “the day
that lady came outta that 280Z pulling her pants away from were attempting to ‘leap frog’ over the advancement of
patches. The treatment has some complications to it, and
her.” I felt like my skin on my lower back had become a
I encountered several. But, I’ve long believed “you can’t
popcorn factory with firecracker kernels. The pain was
make an omelet without breaking some eggs.”
indescribable, intense, exploding. I have had five more of
these episodes in these last years. Extreme stress and heat
After 7 weeks on 7-75mg a day, I was reduced to 4
appear to be the triggering factors. Still, no doctor found
capsules. Targretin has worked so very well for me that
my episodes alarming, and they continued to attribute my
I wish it would have been considered as a first option.
symptoms to dermatitis and inflamed eczema. Who was I
Because of my age and Targretin’s drying effect, I consume
to question them?
a LOT of water for hydration and creams for moisture.
But, the huge, ugly, unwomanly patches are fading, my
In 2003, I was in an auto accident that broke my neck.
countenance is brightening and I am regaining my life,
Over the next three years, that spot grew from a quarter
sometimes in baby steps, but steps forward nonetheless.
size to the entirety of my backside. By 2008, my spot
I took pictures of the before, during, and present. I have
became the least of my issues. The world tilted in 2008
proof of the progress in 8x10 glossies!
for me and millions of others who were suddenly faced
with losing our jobs and the challenge of finding new
I attempt to be ALIVE every day. I eat as best as I can,
employment. We ended up moving to Louisiana, and this
exercise, rest as often as I should, drink my water, limit
was ironically the best move I could have made. Who
sun exposure, take my Targretin and laugh out loud at least
knew?? Along with the increased stress I was under, my
4 times a day. I know how very fortunate I am!! I have
rash continued to grow. It expanded to my breast region,
seen the pictures. LIFE IS GOOD!
under my right arm and between my legs!! It was the
classic “OMG! Go to a doctor NOW!”
4
Forum, Summer 2013
My Personal Journey With Cutaneous Lymphoma: A Caregiver’s Story
Meredith Haab
Wayne, PA
With tremendous bravado I said sure, I’d write about
caregiving for the Spring CLF newsletter. Sure, I’d love to,
no problem. And I did want to, yet the truth is, it hurts. I
actively fight down thoughts about caregiving because for
Mom and I, that meant lesion care. I helped Mom mostly
with her lesion care and also some doctor’s appointments.
But up until the intensive lesion care, Mom and Dad
shielded us “kids” from the lesions and tumors. With deep,
great love, lesion care was endured together by Mom, me,
my wonderful sister-in-law, and a few amazing nurses.
Lesion Care
Mom and I decided to call the cancer care, lesion care –
as opposed to the generally used term, wound care. We
decided to call this what it was in an effort to be honest
and not slip into the safer harbor of denial. We believed
the difference in term was important to the care routine as
well as to other professionals’ understanding that this was
the cancer, not a superficial secondary wound that would
heal. This wasn’t a burn with dead skin to be debrided,
nor a wound that needed to breathe. This was the cancer.
This was It. We were all looking at It, the elephant in the
room, and all I could see between lesions was my Mom’s
beautiful freckled French Huguenot skin (as she’d tell
us). Lesion care between caregiver and patient is nothing less
than intimate. It’s a shared experience. It’s painful for
everyone involved, physically and emotionally. Yet, it’s
also full of grace and love. Participating in lesion care with
my Mom was loving her. It was living with her and sharing
her illness and letting her know she wasn’t alone. It was a
way that I could stay and control my pain in being useful.
It was too painful for me to do nothing and feel helpless.
Doing something and feeling helpful was – well, coping.
New Roles
Mom and I learned a lot about each other: it was
unceasingly brave for her to be cared for and I tried to
match her by being brave enough to be caregiving. After
a lifetime of being a somewhat headstrong daughter, I
was finding out that I desperately wanted to be made out
of the same cloth as Mom. We laughed in our mutual
astonishment and wonder: the apple didn’t fall far from the
tree after all.
There were days when neither of us could face lesion care
– but we had to do it anyway. There were days when Mom
just didn’t want me to be her caregiver. She wanted me
to just be her daughter. She wanted to be just my Mom.
There was a tense dance of honoring Mom’s wishes yet
sometimes having to do what was best for her even when
those two things weren’t the same. These were little soulful
Gabrielle Schwarz Haab and her daughter,
Meredith Haab
deaths we suffered with tears, knowing the roles we now
had, and didn’t want. But we were together… we were
together.
Sacred Time
And then, there’s this: ultimately, caregiving was a sacred
time. A time of pain, confusion, anger, exhaustion, and
hopelessness. All this mixed together with the beautiful
gifts of love, insight, truth, knowing, grace, and still more
love. There was a constrictive sense of duty side by side
with knowing there was no other place I’d be. My Mom
and I talked about essentials all bared down: God, love,
and our roles as mothers and daughters. My Mom, who
was never at a loss for words, had difficulty describing the
immense love and pride she felt about the family in which
she grew up and the family she raised. She was astonished
at how much she was loved by so many. She was seeing
herself in a new light, in a new wide spectrum, and it was
an absolute joy and privilege that she shared with me.
Also, Mom talked about Dad. What a gift to a child of any
age to hear one’s mother speak of her abiding love of one’s
father – even after 52 years of togetherness!
GSH Lesion Care Program
And so, I can close with kinder and gentler thoughts
about caregiving and lesion care than I started with. It
was hard and wonderful. Isn’t that life? What else would
I expect? And in the end, my Mom encouraged me to
create something for others: she gave me her blessing to
start the GSH Lesion Care Program which the Cutaneous
Lymphoma Foundation is wholeheartedly supporting, in
honor of my Mom, Gabrielle Schwarz Haab – Gaby.
For more information about the GSH Lesion Care
Program, contact the Cutaneous Lymphoma Foundation at
(248) 644-9014 or [email protected].
5
Cutaneous Lymphoma Foundation
2-Day
Cutaneous Lymphoma
Patient Conference
The Cutaneous Lymphoma Foundation’s first annual
2-Day Cutaneous Lymphoma Patient Conference
was an amazing event.
Attendees from all over the continent, and from as
far away as Inuvik (it’s above the Arctic Circle!),
gathered and were informed, educated and reassured
by cutaneous lymphoma experts during Saturday’s
clinical presentations.
Dr. Larisa Geskin
CLF Board Members participated in the patient
panel and shared their own personal experiences
with cutaneous lymphoma.
Dr. Alain Rook
Dr. Stuart Lessin
Patient Panel with CLF Board Members: Jeff Ward,
Christopher Shipp, Laurel Carlson and Joe Eischens
Attendees had an opportunity
to establish relationships
with one another and with
the medical professionals
throughout the 2-day conference.
Nurse Practitioner Marianne Tawa and Dr. Pierluigi Porcu
took questions on clinical trials.
6
Forum, Summer 2013
The cocktail reception and silent auction
were a wonderful opportunity for patients,
caregivers/family, CLF staff and Board
Members and corporate partners to mix
and socialize. The auction raised over
$3000 for CLF programs. After the
reception ended, many attendees continued
to stayed connecting and sharing their
journey late into the evening.
During the cocktail reception, past and
present Board Members, who have
generously given years of time and talent
over the last 15 years, were honored. Those
recognized for their of commitment and
dedication include:
Dr. Stuart Lessin, Susan Thornton and Christopher Shipp
Richard Bradlow
Claudia Day
Judy Jones
Margie Legowski
Dr. Stuart Lessin
Leora Lowenthal
Christopher Shipp
Michael W. Young
Appreciation awards were
also presented to our corporate
sponsors:
Former Board Member Claudia Day
Christina Bach, MBE,
MSW, LCSW, OSW-C
Celgene
Therakos
Kyowa Hakko Kirin
Ceptaris
Merck
Seattle Genetics
Medicis
Spectrum
Ali Shapiro
Dennis J. Gardin
Sunday’s program
began and closed with
Dr. Georgia Tetlow
the inspirational stories
of burn survivor Dennis J.
Gardin and Dr. Neil Dicker,
a patient with Sézary syndrome.
In between, attendees were able
to choose from breakout sessions about integrative
medicine, nutrition and insurance issues. The qualityof-life sessions were very popular and a successful
addition to the forum format.
7
Cutaneous Lymphoma Foundation
Cutaneous Lymphoma Patient Educational Forums
For more information and to register for these FREE events, visit www.clfoundation.org or call (248)644-9014.
The Cutaneous Lymphoma Foundation offers free
Patient Educational Forums throughout North America,
which provide an opportunity to:
Receive accurate information about cutaneous
lymphoma and learn about treatment options from experts
in the field.
Learn what’s new in cutaneous lymphoma research
and clinical trials.
Ask the Experts - probably the most popular portion
of the day. The Q & A sessions provide an opportunity
to ask the medical professionals and speakers your
questions, in a relaxed and friendly environment.
Meet and network with other individuals affected by
cutaneous lymphoma. Being diagnosed with or caring
for an individual with a rare disease can be lonely. Meet
others who know and understand your experience.
Learn about available resources for treatment and
support.
We hope to see you soon at an upcoming event!
September 7: Salt Lake City, UT
Cutaneous Lymphoma Foundation
Patient Educational Forum
The Yarrow Hotel, Park City, UT
September 27-29: Brooklyn, NY
North American Educational Forum
on Lymphoma in collaboration with
the Lymphoma Research Foundation
New York Marriott at the Brooklyn
Bridge
October 12: Atlanta, GA
Cutaneous Lymphoma Foundation
Patient Educational Forum
DoubleTree by Hilton Atlanta - Buckhead
October 19: Chicago, IL
Cutaneous Lymphoma Foundation
Patient Educational Forum
More details coming
The Cutaneous Lymphoma Foundation extends
its thanks to the following generous supporters of
our 2013 Patient Educational Forums:
October 26: Minneapolis, MN
Lymphoma Workshop in collaboration
with the Lymphoma Research
Foundation
Hilton Minneapolis/St. Paul Airport,
Bloomington, MN
November 9: San Francisco, CA
Lymphoma Workshop in collaboration
with the Lymphoma Research
Foundation
Hotel Nikko, San Francisco, CA
November 16: Washington, DC
Cutaneous Lymphoma Foundation
Patient Educational Forum
Bethesda North Marriott Hotel &
Conference Center
8
Forum, Summer 2013
One Voice Against Cancer - Lobby Day 2013
The CLF CEO, Susan Thornton, and CLF volunteer, Askia Acosta, joined over
90 patient advocates from 39 other national cancer organizations in Washington,
DC on July 9-10 as part of One Voice Against Cancer. This is an annual event
that brings together a wide variety of organizations and brings “one voice” to
legislators from the collective cancer advocacy community.
It is critical for the CLF to participate in these national efforts and contribute
the stories of our patients to these of the 14 million cancer survivors in America.
Approximately 1,500 people still die every day in this country from cancer.
In the difficult fiscal climate under sequestration, it is even more important for all
of us as cancer survivors and patients to let our legislators know the importance of
continuing to fund cancer research and initiatives.
Askia Acosta and Susan Thornton at
OVAC Lobby Day
We asked the legislators to make the fight against cancer a national priority and funding these efforts must be protected
and prioritized.
Impact of the recent budget decisions:
• Congress has already capped and cut discretionary spending by $1.5 trillion over the next decade.
• The National Institutes of Health budget was cut by $1.7 billion, and the Centers for Disease Control budget was cut
by $570 million this year.
• Unless sequestration ends, cancer research and prevention are scheduled to face another round of sequestration cuts
in fiscal year 2014.
• By fiscal year 2022, discretionary spending’s share of the federal budget will be at its lowest level since President
Eisenhower was in office.
• At the same time, cancer rates are expected to grow over the next decade as the U.S. population ages.
Although these efforts were not specific to cutaneous lymphoma, all federal and state funding for continued support
of cancer research, prevention, education and other programs helps us all move forward in the fight against cancer.
Participating with other groups like the LiveStrong Foundation, American Cancer Society’s Cancer Action Network and
other organizations as part of the OVAC coalition gives us a stronger voice than we have alone.
You too can help. Write an email or letter to your Senators and Congressmen asking them to support the OVAC
initiatives to end sequestration and stop the cuts to cancer research and prevention funding. Adding your personal story
and voice to our efforts in Washington will make a difference. Check out the details of the event (including photos) at
www.OVAConline.org.
Participants came from 41 states and conducted 164
meetings with House and Senate offices, including 67
member-level meetings.
The Pennsylvania contingent had the honor of delivering
an OVAC champion award to Congressman Charlie Dent
(second from left).
9
Cutaneous Lymphoma Foundation
Highlights from IID Medical Meetings and ASCO
International Investigative Dermatology - May 8 - 12, 2013
Late spring found the CLF CEO, Susan Thornton, in
Edinburgh, Scotland for the International Investigative
Dermatology (IID) meeting. The meeting is held every
five years and brings together dermatologists, scientists
and researchers from around the world who specialize in
dermatology. This year’s event was the largest ever with
2300 attendees and over 1200 clinical posters describing
work in all types of skin diseases on display. Over 30
of the posters were specific to cutaneous lymphoma and
represented work by institutions from around the world.
Dr. Tom Kupper, of the Dana Farber Cancer Institute,
presented Skin Homing T-cells: 2013 at the BISD Global
Investigative Dermatology Showcase satellite meeting.
Dr. Kupper is considered an international expert on the
treatment and research of cutaneous lymphoma and other
rare skin cancers. As the current President of the Society
of Investigative Dermatology, Dr. Kupper’s work in
cutaneous lymphoma was highlighted over the course of
this scientific meeting.
Dr. Rachel Clark, an associate professor of dermatology
at Harvard Medical School, was one of three “rising
star” lecturers at the opening ceremonies. Additionally,
Dr. Sima Rozeta, our Young Investigator award winner,
presented her research in epigenetic therapy in cutaneous
T-cell lymphomas at a satellite session on Tuesday.
Epigenetic therapy targets proteins and pathways that
regulate gene expression. Other presentations about
cutaneous lymphoma were offered throughout the course
of the 4-day meeting.
In addition to attending the lectures, the Foundation
participated as part of Coalition of Skin Diseases exhibit
and provided our materials. By the end of the meeting,
all our literature was gone! It is one more way that the
CLF works to educate the clinical community about
cutaneous lymphoma. While at the exhibit, we had several
physicians from other countries stop by and inquire about
connecting with the Foundation and receiving literature
for their patients.
Lecture Highlights: Skin Homing T-Cells
• Skin actually contains a large number of exclusive
memory T-cells. Memory T-cells are fully matured
T-lymphocytes that recognize specific targets (and
have an immunologic memory for its target).
• Using gene sequencing has shown that there is a great
diversity of memory T-cells in normal skin, and these
cells accumulate over time and learn over time how to
respond to challenges from outside the body. Similar
cells are found in the lung but are different than skin
T-cells. For example, influenza T-cells reside in the
lungs and are not found in the skin. Interesting to
note is that there are 10 billion T-cells in the lungs, 10
billion T-cells in the blood and 20 billion T-cells in the
skin.
• CLA positive CD4 and CD8 are hard-wired to
produce cytokines which respond to challenges from
outside the body.
• Per every 20 billion T-cells in the skin, there are one
million T-cells with unique pheonotypes. These are
different than the T-cells found in the blood.
Learning about how these memory T-cells function and
learn over time may provide researchers and clinicians
with critical information about the T-cells’ behavior in
cutaneous T-cell lymphoma. There is much more to learn,
and we will be following this research by the team at the
Dana Farber Cancer Institute.
American Society for Clinical Oncology (ASCO) - May 31-June 3, 2013
The American Society for Clinical Oncology’s (ASCO)
annual meeting provides medical professionals,exhibitors,
patient advocacy groups and others two days of in-depth
analysis and discussion of the top scientific abstracts from
a variety of oncology specialties. The CLF’s Kira Mann
and Susan Thornton attended this large medical oncology
meeting held in Chicago.
Because of its size, the ASCO meeting tends to focus
on the larger, more prevalent forms of cancer like
breast, prostate, and melanoma. Although there were
no presentations specific to cutaneous lymphoma, it did
provide the Foundation an opportunity to participate in
many special sessions offered by our corporate sponsors
and patient advocate partners.
While attending the Patient Partner’s meeting, we
learned about an exciting new grant opportunity from
Celgene, which the CLF plans to apply for. The keynote
presentation was given by Jeffrey Bauer, Ph.D., a Health
Futurist and Medical Economist, who discussed the future
of healthcare and where it may be going.
At another event, we were updated on the rollout of
Health Insurance Exchanges* that will become available
through the Affordable Care Act (ACA) in October. There
are still many unknowns related to the ACA, and each
State will be different in how it decides to implement their
Exchange. However, out of the interactive discussion, a
volunteer workgroup was formed with participants from
many patient advocate organizations to create a decision
ASCO...continued on page 11
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Forum, Summer 2013
How to Live a Life of Joy, continued
who have suffered with the same or similar conditions.
Be BOLD! Ask for help and know that it is a sign of
strength. Ask them about their journey, the wisdom they
have accumulated along the way, and what has or has not
worked for them. There are so many resources available to
us, especially with the internet; it makes research so easy.
Make sure that you deal with reputable sites and positive
people. But most of all, know that you are not alone.
Teamwork:
To live successfully with chronic
disease, you need the right team.
Look for opportunities to interact
with practitioners, patients, and
patient advocates. Each relationship is
another piece of the puzzle. Finding
a kind, empathetic physician/nurse
team that cares about positive patient
outcomes is a critical piece of your
treatment process. Remember, you are
in “partnership” with your physician
and nurse. The three of you are
responsible for getting you the tools
and information you need to properly
manage your disease.
I
have to teach ourselves how to accept what we cannot
change. Anxiety and fear will come, but we don’t have to
let fear win.
Believing in ourselves and having the confidence to carry
on in life, regardless of our challenges, makes us stronger.
Once you get the right team in place, you have to keep
at it! This is a constant struggle for all of us. It is easy
to get depressed, fearful, negative, and to sometimes feel
victimized by our disease. But we need
to get inspired and get back on track.
Being your own advocate gives you
decided a
personal power!
long time ago
I decided a long time ago that my disease
would not steal my joy! It is difficult to
that my disease
persevere alone, which is why the right
team is so important. My team is BIG!
would not steal
I have family, friends and a group of
healthcare providers dedicated to helping
my joy!
me thrive. Refuse to be a victim and
keep moving forward. Sometimes people
get stuck with the question, “why” did
this happen to me verses asking “how.”
How can I use my disease to help myself and others?
“How” is so much more empowering than “why!”
Perseverance:
The definition of perseverance is to persist in any
undertaking, maintaining a purpose in spite of difficulty,
obstacles, or discouragement; continue steadfastly. A
positive mindset is essential; focus on the “opportunity”
verses the obstacles. We have to navigate appropriately.
If a ship or plane is off-course even two degrees, they can
eventually end up on the other side of the world. We need
constant course correction to keep ourselves focused. We
Inspire yourself with a positive attitude! Fill your life with
positive people and look for opportunities to help and
inspire others. It takes your focus off of your condition
and allows you to contribute what you’ve learned on your
journey to countless others who may be suffering.
Give yourself away unashamedly! Make your life a “silver
box”…a gift to others. This will truly give you your best
life!
ASCO....continued
tool for cancer patients who will be navigating the Exchange
enrollment process. The Foundation is taking an active role
in that workgroup. The group, spearheaded by the Cancer
Support Community, held its first meeting on July 9th and
will be working together through October to develop and
publish the decision tool.
Overall, it was a busy May and June for medical meetings,
and the cutaneous lymphoma community’s voice was well
represented.
*From the The Center for Consumer Information & Insurance
Oversight: The Affordable Care Act helps create a competitive
private health insurance market through the creation of Health
Insurance Marketplaces. These State-based, competitive
marketplaces, which launch in 2014, will provide millions of
Americans and small businesses with “one-stop shopping” for
affordable coverage. For more information, visit www.healthcare.
gov.
Check out the latest news and
information from the Cutaneous
Lymphoma Foundation by liking
us on Facebook!
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You too can make a difference.
There are many ways to get involved with the Cutaneous Lymphoma Foundation....
Share your story
Become an advocate
Organize a fundraiser
Make a gift
Volunteer your time
These are just a few of the many ways for you to join us in our mission to make sure that each person with cutaneous
lymphoma gets the best possible care. For more information on how you can make a difference, contact Kira Mann, Director of
Development and Marketing at [email protected] or 248.644.9014.