2011_Summer_Forum - page 1

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible
F
or most patients with cutaneous
T-cell lymphoma or CTCL,
itchiness, also known as pruritus, can
range in degree from a minor irritation
to a tormenting sensation that can
significantly decrease an individual’s
quality of life. CTCL-related itching is
particularly vexing since it can start as a
small fire and progress into a firestorm.
An itch can start in a small patch or
plaque and, if scratched, will trigger
itching in another area, resulting in a full-
blown itching frenzy. In a study by Dr.
Marie-France Demierre of the Boston
University School of Medicine, 88 percent
of CTCL patients ranked pruritus among
the top causes of distress associated with
the condition.
1
When Treatment is Needed
Pruritus can vary in incidence and
severity depending on the type of
CTCL. Mycosis fungoides (MF), is the
most common type of CTCL, and can
appear as flat red patches on the body
as well as thicker, raised lesions called
plaques. People living with MF typically
report various levels of itch, mostly
concentrated in plaques, with the most
severe levels experienced in advanced
cases. The advanced and leukemic form
of CTCL is called Sézary syndrome
(SS), differentiated by the presence of
malignant lymphocytes in the blood and
an extensive thin, itchy, reddish colored
rash that covers over 80 percent of the
body. Sézary syndrome encompasses less
than ten percent of CTCL cases, however
nearly all afflicted individuals suffer from
moderate to severe degrees of pruritus.
Talking to Your Doctor
Above all, talking to your doctor will help
determine the best methods of pruritus
management. Pruritus is a physiological
condition at its root, and appropriate
treatment is more likely to be prescribed
if the degree of suffering is quantified.
When meeting with your doctor, try to
describe the severity of itchiness on a
scale of one to ten, with one being little
to no itch and ten being unbearable and
inhibitive to daily functions. In some
cases it may be helpful for patients to take
a quality of life survey in order for the
doctor to better understand how pruritus
impacts the individual on an emotional
and functional level. This can result in
more effective care and increase the level
of communication between doctor and
patient.
Available Treatment Methods
Although a definitive cause for pruritus
has yet to be determined, there are
various treatments. A common first-line
Itching For Answers: Pruritus in Cutaneous
Lymphoma Patients
John A. Zic, M.D.
“Itching for Answers…” – 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.
From the President and the Medical
Advisory Board Chairman
. ............ 2
From the Chief Executive Officer ... 3
Cutaneous Lymphoma Patient
Educational Opportunities .............. 4
My Personal Journey With Cutaneous
Lymphoma. ....................................... 5
Recognition at World Congress of
Dermatology
Farewell to Amanda Kik .................. 6
My Personal Journey With Cutaneous
Lymphoma. ........................................ 7
Making Connections ................... 8-9
Welcome Susan Thornton
Needs Assessment Update
Help Us Go Green............................ 10
Itching for Answers, Continued ..... 11
Understanding Itch ......................... 12
Medical Documentation
What Is Cutaneous Lymphoma? ... 13
Young Investigator Award
Tax-Free IRA Charitable Rollover .. 14
One Voice Against Cancer
Music Moves Me Run ..................... 15
World Lymphoma Awareness Day 16
Summer 2011
John A. Zic, M.D.
Dr. John Zic is an
Associate Professor of
Medicine in the Division
of Dermatology at the
Vanderbilt University
Medical Center in
Nashville, Tennessee.
Dr. Zic received his
undergraduate degree
from the University
of Notre Dame and
medical degree from the
Vanderbilt University School of Medicine in 1991.
He completed his internship in Medicine at the
University of Chicago Hospital and his postgrad-
uate training in Dermatology at the University
of Illinois at Chicago Hospital. In 1996 he estab-
lished the Vanderbilt University Cutaneous
Lymphoma Clinic. He is presently the chair
of the Education Committee and the Pruritus
Task Force of the US Cutaneous Lymphoma
Consortium.
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