2012_Winter_Forum - page 1

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible
As a dermatologist, I was trained to
identify cutaneous T-cell lymphoma
(CTCL) but never expected to make this
area a major focus. My interest in CTCL
really started when I diagnosed my father’s
CTCL.
While visiting home in Kansas City, I was
asked by my mother to look at my father’s
persistent hip rash. I told him it looked
like CTCL, and he underwent a biopsy
that confirmed the diagnosis. He achieved
excellent results after treatment with
topical steroids and retinoids, narrow-band
UVB, and extracorporeal photopheresis.
Sadly, several years later he died from an
unrelated condition.
Shortly after my father’s diagnosis I
began working on a CTCL study with
leading CTCL researcher Thomas Kupper,
MD, Chair of the Brigham & Women’s
Hospital’s Department of Dermatology
and Director of the Harvard Skin Disease
Research Center. Today, I am Director
of the Division of Dermatology at the
University of Kansas Medical School.
CTCL Signs and Symptoms
Most people with CTCL first present it to
their primary care doctor or dermatologist.
I tell patients to watch for:
• Red, scaly rashes in the “bathing
suit” area
• Red, scaly rashes anywhere that are
spreading and getting worse
• Unexplained itch
Patients and caregivers who are concerned
about a long-term rash should seek out the
advice of a dermatologist with experience
in CTCL. The best way to definitively
diagnose CTCL is through a biopsy. A
biopsy is a simple procedure involving
the removal of a small piece of skin for
testing to determine the presence or extent
of disease. Blood tests, such as flow-
cytometry, can help determine what stage
of disease is present.
To diagnose and treat CTCL, it helps
to take a team approach. Patients and
caregivers can benefit from treatment
at centers with experienced specialists
in critical roles. Key healthcare team
members include:
• Dermatologists – diagnose
CTCL and manage skin-directed
treatments
• Dermatophathologists – diagnose
CTCL biopsy specimens
microscopically
• Oncologists with CTCL expertise
– manage extra-corporeal
photopheresis and many systemic
therapies
• Radiation oncologists – manage
radiation therapy
• Primary care physicians – manage
medical issues other than CTCL
Based on years of work with leaders in
the field, as well as my own experience,
I believe that combining treatments often
works best. There are many relatively
Cutaneous T-Cell Lymphoma:
A Dermatologist’s Perspective
Daniel J. Aires, M.D., J.D.
“Cutaneous T-Cell Lymphoma: A Dermatologist’s Perspective” – Continued on Page
11
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
email:
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 pro-
vided for informational purposes only. Because
the symptoms and severity of cutaneous lym-
phoma vary among individuals, the Cutaneous
Lymphoma Foundation recommends that all
drugs and treatments be discussed with the
reader’s physician(s) for proper evaluation, treat-
ment and medical care.
INSIDE THIS ISSUE
From the President and the Chief
Executive Officer . ............................ 2
Cutaneous Lymphoma Patient
Educational Opportunities .............. 4
My Personal Journey:
Laurel Carlson .................................. 5
Skin-Directed Therapies ............... 6-7
Highlights from the ASH 2011 Annual
Meeting .............................................. 8
My Personal Journey:
Joseph Eischens ............................... 9
Good Skin Care Tips ....................... 10
Coming Soon: Our New “Patient’s
Guide to Understanding Cutaneous
Lymphoma”
New CTCL Fact Sheet From The LLS
Available in English and Spanish ...11
My Personal Journey:
Kory Floyd, PhD ................................12
Reach Out And Touch Someone:
Why Affection Is Good For You ........ 13
Giving and Getting Involved
Fourth Annual Music Moves Me Run....14
2011 American Society of
Hematology Young Investigator
Award Recipient ................................15
Celebrate Rare Disease Day on
February 29, 2012 ............................16
Winter 2012
Daniel
J. Aires,
M.D., J.D.
is Director,
Division of
Dermatology,
at the
University
of Kansas
Medical
School.
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utaneous Ly pho a Foundation: Making sure each person with cutaneous ly pho a gets the best care pos ible
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