2011_Fall_Forum - page 1

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible
linical trials can offer a promising
treatment option for people living with
cutaneous T-cell lymphoma (CTCL),
especially when a patient finds their dis-
ease is unresponsive to therapies that are
currently approved by the Food and Drug
Administration (FDA).
Clinical trials are research studies that
investigate new or experimental treat-
ments in patients living with a specific
These studies are not only impor-
tant because they contribute to the overall
knowledge and progress in understanding
diseases such as CTCL, but they also
play an instrumental role in the develop-
ment and FDA approval of new therapies.
Most importantly, a patient may benefit
from an investigational treatment they are
receiving as part of a clinical trial – they
may experience a complete response, see
improvement in their quality of life or
find relief from symptoms. To continue
expanding the treatment landscape for
CTCL and potentially make a difference
in the lives of patients, it’s imperative that
individuals living with CTCL participate
in clinical trials.
There are various types of clinical tri-
als including treatment trials that test
experimental therapies or combinations
of drugs; prevention trials that look for
better ways to prevent disease and/or
disease reoccurrence; diagnostic trials that
identify better tests for diagnosing a dis-
ease; screening trials that work to detect
disease; and quality of life trials that aim
to improve comfort for individuals with a
chronic illness.
Regardless of the type, all
clinical trials follow a defined protocol and
are divided into phases:
• Phase I involves a small group of sub-
jects that are initially tested to determine
the best method for administering the
drug and the appropriate dosage amount;
• Phase II works with a slightly larger
group of patients to test the efficacy or
effectiveness of the drug;
• Phase III is an even larger group that
usually involves comparing the new treat-
ment to a traditional or current standard
• If the results from phase III are favor-
able for the new drug, the results of the
trial may be presented to the FDA for
approval of the treatment; and
• Phase IV, or post marketing studies,
assess information such as the drug’s risks,
benefits and optimal use.
If you are interested in participating in a
clinical trial, the decision is one that can
be made with your physician and the help
of a support network. Since your doctor
knows your health history, he can assist
you in locating a trial and answer any
questions you may have.
Clinical Trials: A Pathway to Treatment for
Cutaneous Lymphoma Patients
Pierluigi Porcu, M.D.
“Clinical Trials…” – Continued on Page
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
is published by the
Cutaneous Lymphoma Foundation.
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 Chief
Executive Officer . ............................ 2
Cutaneous Lymphoma Patient
Educational Opportunities .............. 4
My Personal Journey: Susan
Ferguson ........................................... 5
Patient Advocate Foundation
Co-Pay Relief Program ..................... 6
My Personal Journey: David Smith. . 7
Taking Care Of The Whole Person
Through Integrative Medicine ......8-9
New Research Leads to More
Effective CTCL Treatments............... 10
Clinical Trials, Continued
Clinical Trial for First-In-Class Topical
Histone Deacetylase Inhibitor ....... 11
Welcome New Board Members 12-13
Free Patient Education Materials .. 13
Annual Fund Campaign . ............... 14
A Doctor’s Personal Journey: Francine
Foss, MD................................................15
Webstie Re-Launch ........................ 16
Fall 2011
Pierluigi Porcu, M.D.
is Associate Professor
of Internal Medicine,
Division of Hematology,
Ohio State University
Comprehensive Cancer
Center (OSUCCC) where
he is co-leader of the
Cutaneous Lymphoma
Program and a member
of the Viral Oncology
Group of the OSUCCC
where he conducts clinical and translational
research in lymphoma. Dr. Porcu has worked
extensively in the field of cancer and lympho-
ma education including participation in many
of the Cutaneous Lymphoma Foundation’s
past Patient Educational Forums along with
serving as a Co-Chair of the Foundation’s
Cutaneous Lymphoma Summit held in
October 2009.
utaneous Ly pho a Foundation: Making sure each person with cutaneous ly pho a gets the best care pos ible
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