2012_Spring_Forum - page 1

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible
My focus on cutaneous T-cell lymphoma
(CTCL) occurred during my fellowship
in medical oncology at the National
Cancer Institute (NCI). At the NCI, I
worked with Paul Bunn, MD, Professor,
James Dudley Chair in Cancer Research,
University of Colorado, then a pioneer in
CTCL research.
The first patient I treated was discovered
to have a virus (HTLV1) that was
determined to be a root cause of a CTCL
variant: adult T-cell lymphoma. It was
from this unique case that I developed
a passion and interest in CTCL. Today
I am the Director of the Robert H.
Lurie Comprehensive Cancer Center of
Northwestern University and Director
of Cancer Programs at Northwestern
Memorial Hospital. I am also on the
Medical Advisory Board of the Cutaneous
Lymphoma Foundation and heavily
involved in CTCL research.
In the early 1980s, in collaboration with
a distinguished dermatologist, Henry
Roegnik, I created a CTCL clinic at the
Lurie Cancer Center where patients are
seen simultaneously by a multidisciplinary
team including a dermatologist and
oncologist. This makes it easier on the
patient in terms of travel and ensures
consistency in the messages they are
receiving from our team. By treating
CTCL in a team setting, it also allows us
to streamline costs to the patient through
joint decision-making. I believe this should
be considered best practice when it comes
to the treatment of CTCL and it is what
sets us apart from many other institutions.
Diagnosing Cutaneous T-Cell
Lymphoma
Since CTCL usually presents as a
spreading red, scaly rash, dermatologists
are usually the first to diagnose and lead
the treatment team. Individuals who are
concerned about a long-term rash are
encouraged to seek evaluation by their
dermatologist. The best way to definitively
diagnose CTCL is through a biopsy,
which is a procedure involving the removal
of a small piece of skin for testing to
determine the presence of disease. Blood
tests, such as flow-cytometry, can help
verify disease in some instances and effect
therapeutic decisions.
CTCL progression is variable. Patients
may progress slowly, rapidly, or not at all.
The majority of patients will experience
skin symptoms without any major internal
complications.
When a patient has been diagnosed
with CTCL, it is important that they, as
well as their caregivers, start gathering
information about the disease.
Cutaneous T-Cell Lymphoma:
An Oncologist’s Perspective
Steven T. Rosen
“Cutaneous T-Cell Lymphoma: An Oncologist’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 CEO .... 2
Cutaneous Lymphoma Patient
Educational Opportunities .............. 4
Systemic Therapies .......................... 5
New Additions to Foundation Team .. 6
New Transportation
Assistance Fund ................................. 6
SID Young Investigator Award ........ 6
Conversation with a Patient: Neil
Dicker ............................................… 7
Workplace and Cancer .................. 8
Hair Loss and Cutaneous T-Cell
Lymphoma........................................10
The Patient Mailbag .........................11
My Personal Journey:
Nikki Thomason ...................................12
New Patient’s Guide to Cutaneous
Lymphoma …................................... 13
New Strategic Plan ….......................13
Message from Kira Mann, Director of
Development …................................14
Let Us Count You In for the Annual
Fund Campaign …...........................14
Highlights from the United States
Cutaneous Lymphoma Consortium
Annual Workshop ............................15
Spring/Summer 2012
Steven T. Rosen,
MD is the
Director of the
Robert H. Lurie
Comprehensive
Cancer Center
of Northwestern
University and
Director of Cancer
Programs at
Northwestern
Memorial Hospital.
Dr. Rosen serves
on the Cutaneous
Lymphoma
Foundation’s Medical Advisory Board and
has participated in many educational
opportunities, including Patient Educational
Forums, provided by the Foundation.
Forum
utaneous Ly pho a Foundation: Making sure each person with cutaneous ly pho a gets the best care pos ible
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