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Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible
Forum
www.clfoundation.org
Summer 2007
Ask the Experts: Why do I Itch?
From the Executive Director ........ 2
Democracy in Action ................... 3
“Ask the Expert” is a regular feature in
Forum, where you can have your questions
answered by an expert. This issue, questions
are answered by Kelley Vidulich, MD and
Participate in an Itch Study ......... 4
Madeleine Duvic, MD .
Dr. Vidulich is
Coping with CTCL:
One Patient’s Philosophy ............. 5
a CTCL Fellow
at MD Anderson
Cancer Center
CTCL-MF Online Support .............. 5
and has been
working with
Dr. Madeleine
Free Information About
Extracorporeal Photopheresis ..... 5
Duvic since July
of 2006. She is a
Coalition of Skin Diseases
Advocates at the American
Academy of Dermatology
Annual Meeting ............................6
1999 graduate of the University of Florida,
and attended the University of Miami
School of Medicine in 2004. She studied
pathology at the University of California at
San Francisco, completed an internship in
Cutaneous Lymphoma
Treatment Options Presented
at Dermatology Nurses’
Association Annual Meeting ....... 6
medicine at MacNeal Memorial in Chicago,
and is interested in a career in dermatology or
dermatopathology.
Dr. Madeleine
Cutaneous Lymphoma Patient
Educational Opportunities ........... 7
Why do I itch?
Itch, or pruritus, is the feeling that
makes one want to scratch. Pruritus, a
common distressing symptom in CTCL
patients, may be unrelenting and may
result in insomnia, apprehension, and
despair. It is uncertain why people itch,
but it is a complex process involving
the stimulation of free nerve endings in
the skin and processing of nerve signals
in the brain. Chemicals may cause itch
including histamine, serotonin, opioids,
and cytokines. Pruritus can be found
in many diseases of the skin such as
cutaneous T-cell lymphoma (CTCL).
In CTCL patients, itching may be
worsened by staph aureus infections or
colonization which can be improved by
skin care and antibiotics. It can also be
precipitated by cytokines released by the
T-cells in the skin. Itching may also be
a symptom of an internal condition (i.e.
liver or kidney disease or diabetes), or
may be associated with nervous system
dysfunction.
Duvic is Professor
and Deputy Chair
of the Department
of Dermatology
at the University
of Texas MD
Anderson Cancer
Center. She
graduated Magna Cum Laude from Rice
University, and she completed residencies
in Internal Medicine and Dermatology at
Duke University. She resides in Houston
with her two beautiful daughters and a loving
husband. She has been a pioneer in cutaneous
T-cell lymphoma research and sits on the
Cutaneous Lymphoma Medical Advisory
Board.
What can I do to find some relief
from my itch?
Various treatments of pruritus
exist depending on the cause or type
of pruritus. In patients with CTCL,
we take two approaches towards the
management of pruritus: treatment of
the underlying disease (light therapy,
oral retinoids, photopheresis, etc.) and
symptomatic treatment. Symptomatic
treatment may provide earlier relief than
treating the disease itself.
Antihistamines block redness, heat,
swelling, and resulting itchiness which
“Itch” continues on page 4
Cutaneous Lymphoma Foundation
Forum
The newsletter of the Cutaneous Lymphoma Foundation
ALL RIGHTS RESERVED
DESIGNER & EDITORIAL DIRECTOR
Amanda L. J. Kik
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.
SCIENTIFIC 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. National Institutes of Health
Robert Knobler, M.D. University of Vienna
Thomas Kupper, M.D. Brigham and Women’s Hospital
Liliane Laroche, M.D. University of Paris
Stuart Lessin, M.D. Fox Chase Cancer Center
Sue McCann, MSN, RN University of Pittsburgh Medical Center
Lauren Pinter-Brown, M.D. UCLA Medical Center
Porcu Pierluigi, M.D. Ohio Sate University
David Ramsay, M.D. New York University
Alain Rook, M.D. University of Pennsylvania
Steven T. Rosen, M.D. Northwestern University
Marianne Tawa, MSN, RN, ANP Dana Farber Cancer Institute, Boston
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
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
email: info@clfoundation.org
www.clfoundation.org
Forum is published by the
Cutaneous Lymphoma Foundation.
Because each person’s body and response to treatment is
different, no individual should indulge in self-diagnosis
or embark upon any course of medical treatment that is
described in Forum without first consulting with his or
her physician.
Cutaneous Lymphoma Foundation is not responsible for
the medical care or treatment of any individual.
2
From the Executive Director
I
was recently invited to speak about
CTCL from a patient’s prospective at
a Symposium on Cutaneous Lymphoma
at Moffitt Cancer Center in Tampa,
Florida. The meeting ended too late for
me to catch the last plane out to Detroit,
and I had to spend the night and fly
out early Sunday morning. At least the
weather was nice and I was able to get
in a long walk. As I was walking and feeling sorry for myself for
not being home on the weekend, it dawned on me that I was
not the only one who gave up their Saturday to learn and share
our knowledge about CTCL.
This was a group of dermatologists, oncologists, radiation
oncologists, pathologists, nurses and pharmaceutical representatives who were very interested and excited about CTCL. They
kept talking about CTCL on the breaks and during lunch. I
have seen this over and over again at the medical meetings I
attend. Here are some more examples of outstanding physicians
dedication to their patients:
At a late dinner, one Friday night at a medical meeting, Dr.
Stuart Lessin excused himself to call a patient to give him test
results so he wouldn’t have to worry over the weekend.
This week, Dr. Youn Kim emailed me to say she would
take a late flight back from a New York speaking engagement
on a Friday night so she could speak at one of our educational
forums in San Francisco on Saturday morning.
When one of our listserv members was having some unusual symptoms, Dr. Lauren Pinter-Brown gave me information
so I could get back to the member to get him help that literally
saved his life.
All of the physicians that volunteer their time to speak at
our educational forums take the time to put together presentations and spend time away from their families on a weekend
because they are dedicated to their patients.
We only see our physicians in the office, but we don’t see all
the time they spend in research, clinical trials and medical meetings. All of these things affect us indirectly.
Sometimes we get frustrated by our physicians when they
only spend a few minutes with us, but there is much more time
they put in that we don’t see. It is all necessary to be able to give
us the diagnosis and ongoing care we need. I know that in the
past when I have been frustrated about my disease that I have
been cranky in my doctor’s office.
We have Mother’s Day, Father’s
Day, Secretary’s Day—maybe we
should celebrate Doctor’s Day.
Forum, Summer 2007
Democracy in Action
by Rick Megargell,
Secretary,
Cutaneous
Lymphoma
Foundation Board
of Directors
M
arch
27th was
designated 2007 Skin Disease Research
Day in Washington, DC. This event
was sponsored by the American
Academy of Dermatology Association,
the Coalition of Skin Diseases and the
Society for Investigative Dermatology.
Your Foundation was represented by
Judy Jones, Amanda Kik, Claudia Day
and me. The purpose of this event was
for representatives of skin disease and
research organizations to educate their
elected officials on the importance of
the 2008 National Institute of Health
(NIH) budget and a 6.7% increase to
continue many worthwhile projects.
We arrived in Washington on
March 20th to a full day meeting
with the Coalition of Skin Disease
representatives and advocates. We came
to a consensus that we need to speak as
one voice as advocates for those with
skin disease and exchange ideas on
how we can improve our operations.
In order to accomplish this, we will
be participating in joint projects at
educational events to get the word out
about skin disease. Also discussed were
matters relating to proper treatments for
specific skin disease diagnosis and how
to improve communication with patients
and specialists.
During the evening of March 20th,
we had the opportunity to receive our
assignments for the next day at the
Capitol and meet some of the people
from our state that would be joining us
on the face-to-face meetings. I live in
Pennsylvania and was introduced to a
dermatology resident from Philadelphia,
a researcher at the University of
Pennsylvania, and an executive director
of a skin disease foundation in Lansdale
(suburban Philadelphia). I was the only
patient and also Board member and
brought that prospective to the group.
Being from a large state, I am also a
resident of the rural central part of the
state and brought a little geographical
balance to the group.
Wednesday, the 21st, started out
with a strategy breakfast and then we
went to meet with a staff member in
Senator Robert Casey’s office. While
Senator Casey is new to the Senate and
he was not named to the committee on
Health, Education and Labor, his staff
person conveyed to us that “health” was
his number one priority and did not see
a problem with supporting our request.
Next, we went to the office of Senator
Arlen Specter. Sen. Specter is a cancer
survivor and an ardent supporter of the
NIH. We left his office feeling assured
that he would support our request for
an increase in funding. At this point,
our partnership broke apart for separate
visits to our individual Congressmen.
My Congressman, Paul Kanjorski, had
undergone heart by-pass surgery earlier
in the week. I met with his aide who felt
very confident that the Congressman
would support our request.
Please note that each of my elected
officials that I met with have been
personally touched by major health
issues and I feel confident they realize
the importance of the work the NIH
does for all people. Attending these
meetings in Washington brought me
great fulfillment to represent you and the
Foundation and I hope to be there in the
future for this worthwhile work.
Above: Skin Disease Research Day
provides an opportunity for our voice
to be heard on Capitol Hill. Pictured
above are Rick Megargell, Secretary,
Cutaneous Lymphoma Foundation
Board of Directors, dermatology
research fellows, and members of the
Coalition of Skin Diseases.
Above: Claudia Day, President,
Cutaneous Lymphoma Foundation
teams up to advocate in Virginia
Below: Rick Megargell, Secretary,
Cutaneous Lymphoma Foundation and
Martin Weinstock, MD, Brown University
3
Cutaneous Lymphoma Foundation
“Itch” continue from front page
occurs when histamines are released in
the skin. Long acting antihistamines
are available in less sedating forms
(loratidine, fexofenadine), while
shorter acting sedating antihistamines
(diphenhydramine 25–50mg po,
hydroxyzine hydrochloride 25mg po)
can be most helpful at bedtime when
pruritus is usually at its worse. Topical
antihistamines such as Caladryl may
also be helpful. Doxepin, a tricyclic
medication, is an antihistamine and a
useful psychotherapeutic which can be
started at a dose of 25–50mg, taken orally
at bedtime.
Topical corticosteroids, through
anti-inflammatory properties, can be
applied to pruritic or reddened areas to
control inflammation and disease. Wet
towel wraps can be performed daily with
Participate in an Itch Study
The University of Minnesota is
conducting a study to identify
itch-related biomarkers in the
skin of patients with cutaneous
T-cell lymphoma (CTCL). Little
is known about the fundamental
mechanism of itch in general
and specifically in CTCL. This
research may provide the foundation for finding the trigger for
itch in CTCL and ultimately
help to find potential therapies
that provide some relief.
They will soon be looking for
study participants. For more
information, please contact:
cortisone creams to control pruritus
and treat skin lesions. Prolonged use of
topical corticosteroids may cause skin
atrophy, and they may be alternated with
emollients to relieve dry skin.
Gabapentin, an anticonvulsant,
may be prescribed to relieve pruritus
at a starting dose of 300mg orally,
three times a day, and titrated upward
not to exceed a dose of 2400mg per
day. Gabapentin acts on the brain to
prevent pruritus by blocking neuronal
hyperexcitability.
Alternatively, over-the-counter
treatments for itch have been helpful
for many patients. Creams containing
camphor and menthol may depress
sensory receptors and give immediate
relief. Moisturizing after bathing is very
important, and compounds containing
petrolatum and glycerin are best applied
while the skin is wet.
Severe pruritus can affect patients’
functioning, and symptomatic relief may
improve their quality of life.
Patients may benefit from topical
and oral treatments of pruritus as
described above, but it is also important
to treat the CTCL disease itself.
Treatment of disease may relieve
pruritus. Early stage patients may benefit
from topical creams alone, but patients
with advanced disease may require
systemic treatment such as bexarotene,
interferon, photopheresis, SAHA, or
denileukin diftitox. Long-term use of
topical corticosteroids causes atrophy
or thinning of the skin. In addition to
relieving pruritus, systemic treatment
may prevent overuse or reliance on
topical corticosteroids.
Baths and Skin Care
Oatmeal baths may feel soothing to your irritated skin. You
can buy oatmeal bath products at your local pharmacy.
Bathing or showering in lukewarm (not hot) water with mild
soap or cleanser may also help soothe the skin. Bubble-bath
products and after-bath powders may cause your skin to itch
more, so it is best to avoid using them. Rinse yourself completely and pat (do not rub) your skin lightly to dry. Applying
moisturizer after bathing is very important. It can help care
for your skin and prevent dryness and itching. Talk with your
doctor or nurse about a moisturizer for you.
Laundry
Try switching to a very mild laundry detergent. Some commercial detergents and fabric softeners may irritate sensitive
skin. Try adding vinegar (1 teaspoon per quart of water) to
your laundry rinse cycle. This helps remove all the soap from
your clothes, which also may help lessen skin irritation.
Clothing
Wearing loose-ﬁtting, lightweight clothing can help cut down
on skin irritation and itching.
Marna Ericson, Ph.D.
612-624-2995
Barrie Miller
mille235@umn.edu
612-625-5925
Jaime Nugent
612-626-9728
4
Itch relief
Try applying ice or a cool, damp washcloth to areas of your
skin that are especially itchy. Rubbing your skin and applying
pressure to the skin are better for your skin than scratching.
Talk with your doctor about medicines that may help relieve
itching, such as antihistamines or anti-anxiety medicines.
Forum, Summer 2007
Coping with CTCL: One Patient’s Philosophy
by Noal Cohen,
long-time member
and contributor to
the CTLC-MF
Listerv, an online
patient support
group
S
omeone on
the MF/
CTCL listserv recently asked, “What do
you do to try to forget about our disease?
I really need some good ideas because
with this disease, normal everyday
stresses, and the coming of winter, I am
starting to go nuts.”
My response: I know the feeling
well. It was like a ball and chain, always
there, weighing me down. But as I’ve
gotten older, I’ve learned to just take
it a day at a time and not obsess. If I
feel well, fine—I won’t look for trouble.
And keep in mind that no treatments
are curative but many are expensive and
troublesome so when I leave my checkup
having been told that I don’t need to
treat, I’m very grateful.
You’ve got to view your situation as
that of someone with a chronic disease.
This is difficult for cancer patients
because malignancies are usually treated
aggressively with the object of a cure or
long-term remission. But that doesn’t
often happen with MF/CTCL so we
feel frustrated and panicky. You have to
have trust in your physician and not keep
looking for trouble. When I was told
to stop topical nitrogen mustard (NM)
treatments after 10 months, my skin
didn’t look completely normal to me but
it sure looked better than when I was
first diagnosed. And, for a long time, I
was quite paranoid over any perceived
changes.
Some of us are very ill and clearly
need treatment and attention constantly.
But many of us are able to lead almost
normal lives, mainly going for periodic
checkups with an MF/CTCL expert
and having to resort to treatments from
time to time. In the overall picture of
health and disease, things could be
a lot worse. So until a cure is found,
relax and take things a day at a time.
Constant, aggressive treatment for many
of us is unwarranted, expensive and can
negatively affect our quality of life. So
be thankful for those days that you are
feeling well, living a normal life and not
dealing with the side effects of one or
more drugs.
I am 69, patch/plaque stage,
diagnosed 1990, and have been treated
with topical NM and steroids. At
my checkup in September 2006, the
dermatologist described my condition
as “resting stage” but this past January,
he instructed me to apply fluocinonide
cream to certain areas. This is the typical
waxing/waning pattern and there’s really
little I can do about it so I’m just grateful
for those periods when I am treatment
free. Be vigilant but don’t ruin your life
trying to gain control of things that you
really can’t.
CTCL-MF Online Support
The CTCL-MF on line support
group is a free discussion list for
patients, family, friends, researchers
and physicians to discuss clinical
and non-clinical issues and advances
pertaining to cutaneous lymphomas,
including mycosis fungoides, Sézary
syndrome and related diseases.
The list includes information about
patient experiences, psychosocial
issues, new research, clinical trials,
and discussions of current treatment
practices.
To join the list,
• e-mail: listserv@listserv.acor.org
• Leave subject area blank
• In message area, type: subscribe
CTCL-MF your name
CTCL-MF Online Parent Support
Parents of children diagnosed with
cutaneous T-cell lymphoma have
unique questions and issues. We
now offer a very small, free, online
discussion group just for you.
To join the list,
• e-mail: listserv@listserv.acor.org
• Leave subject area blank
• In message area, type: subscribe
CTCL-MF-Parents your name
Free Information About Extracorporeal Photopheresis
Therakos, manufacturer of the Extracorporeal Photopheresis (ECP) system UVAR XTS, has produced a new booklet
entitled, Answering your questions about Therakos Photopheresis: A guide for patients and caregivers. Therakos ECP
is approved as a medical treatment designed to alleviate skin problems associated with CTCL. Each ECP treatment is
a procedure based on the collection of a small portion of a person’s white blood cells. These cells are then treated with a
medicine that is activated by brief exposure to UVA light with prompt return of the treated cells to the person’s bloodstream. The booklet is available by sending an email request to: WebCorrespondence@tksus.jnj.com.
5
Cutaneous Lymphoma Foundation
Coalition of Skin Diseases Advocates at American
Academy of Dermatology Annual Meeting
H
The American Academy of Dermatology
meeting is a great opportunity for the
Cutaneous Lymphoma Foundation to
share information about cutaneous
lymphomas with physicians
ow many times has a person
with cutaneous lymphoma gone
undiagnosed because their dermatologist
had never heard of the disease? This is
a common story, and a source of great
frustration for many. One way the
Cutaneous Lymphoma Foundation
works to alleviate this problem is to
have a strong presence at the American
Academy of Dermatology Annual
Meeting—something we’ve been doing
since our inception in 1998.
This meeting attracts over 8,000
physicians each year and offers several
days of educational opportunities. Our
booth (pictured left) is in collaboration
with the Coalition of Skin Diseases
(CSD), a powerful
advocacy and
educational group
for all skin diseases.
Throughout the
meeting, physicians
drop by the
booth to pick up
literature from our
organizations and
speak with CSD
representatives.
Breakout sessions
about cutaneous
lymphomas, where
experts in the field
(like Dr. JoAnn Latkowski, Dr. Peter
Heald, Dr. Madeline Duvic, and Dr.
Sereta Parker) speak to roomfuls of
dermatologists, were numerous this year.
We see this as a growing trend over the
years, and one that we will continue to
encourage.
The International Society of
Cutaneous Lymphomas also meets
during this time. This impressive
international group of specialists
discuss treatment standards and staging
guidelines. Their work serves to advance
patient care for cutaneous lymphomas.
The Cutaneous Lymphoma
Foundation will continue to represent
people with this disease at meetings like
the American Academy of Dermatology
Annual Meeting, the Dermatology
Nurses’ Association Annual Meeting,
the Society of Dermatology Annual
Meeting, and the American Society of
Hematology Annual meeting in order
to make sure that each person with
cutaneous lymphoma gets the best care
possible.
Cutaneous Lymphoma Treatment Options Presented at
Dermatology Nurses’ Association Annual Meeting
The Dermatology Nurses’ Association Annual Meeting is yet another essential meeting where the Cutaneous Lymphoma Foundation and the Coalition
of Skin Diseases present materials and talk with professionals who are treating skin diseases. At the meeting this February, there was a breakout session
specifically for nurses who treat cutaneous lymphomas. There were educational presentations about photopheresis and Zolinza, as well as an opportunity for learning about the Cutaneous Lymphoma Foundation. We are always
impressed with the compassion of this very special group of nurses, who are
often the ones who interact the most with people with cutaneous lymphoma.
6
Forum, Summer 2007
Cutaneous Lymphoma Patient Educational Opportunities
June 16, 2007
Boston, MA
Lymphoma Workshop, presented with
the Lymphoma Research Foundation
Sheraton Needham
October 12 – 14, 2007
Brooklyn, NY
North American Educational Forum
on Lymphoma presented by the
Lymphoma Research Foundation
June 30, 2007
Philadelphia, PA
Cutaneous Lymphoma Patient
Educational Forum
University of Pennsylvania
October 20, 2007
Pittsburgh, PA
10th Annual Jegasothy Support
Group for CTCL
June 30, 2007
Nashville, TN
Cutaneous Lymphoma Patient
Educational Forum
October 20, 2007
Calgary, AB
Living with Lymphoma: The Journey
Forward, presented with the
Lymphoma Foundation Canada
September 15, 2007
San Francisco, CA
Lymphoma Workshop, presented with
the Lymphoma Research Foundation
November 3, 2007
Minneapolis, MN
Lymphoma Workshop, presented with
the Lymphoma Research Foundation
For more information about these free events, please visit our website, www.clfoundation.org, or email us
at education@clfoundation.org, or call (248)644-9014
Patient Educational Forums provide exceptional opportunities for people with cutaneous lymphoma to receive accurate information about treatment options, access experts in the ﬁeld and connect with other people with similar experiences.
Cutaneous Lymphoma Foundation Patient Education Forums key features:
These educational
opportunities are made possible
by generous unrestricted
educational grants from:
Platinum Sponsors: Eisai Inc. and Ovation
Gold Sponsors: Therakos and Merck Oncology
Silver Sponsor: Gloucester
Half-day to day-long event
Held in cities throughout North America
Professional and lay speakers
Format includes lectures, Q&A sessions and small-group discussions
Objectives:
• Develop a better understanding of diagnostic tests.
• Learn about treatments available for diﬀerent stages.
• Identify resources for treatment and support.
7
PO Box 374
Birmingham, MI 48012
NON-PROFIT
US POSTAGE PAID
BIRMINGHAM MI
PERMIT NO 265
Free Cutaneous Lymphoma Patient Educational Materials
Order any of these educational materials free of charge!
Simply visit www.clfoundation.org and click on “Publications”
or call 248-644-9014.