Forum
From the President.............................2
From theCEO.....................................2
NeedsAssessment.............................3
Fall 2010 Patient
Educational Forums...........................4
HelpUsGoGreen..............................5
A Patient’s Story:
AMan in theArena...........................6
Patient Assistance Programs............7
Support a Third Party Fundraiser
Benefiting theCutaneous
Lymphoma Foundation.....................8
ACaregiver’s Story: My Personal
Journeywith theCutaneous
Lymphoma Foundation.....................9
2009Cutaneous Lymphoma Summit
Proceedings Published....................10
WelcomeNewDirector of
Programs and Services...................10
Highlights from the First
WorldCongress of
Cutaneous Lymphomas..................11
Annual FundCampaign..................12
PlannedGiving Feature:
The Bequest......................................13
Cutaneous Lymphoma Patient
Educational Opportunities..............14
Website Re-Launch..........................15
Winter 2011
CutaneousLymphomaFoundation:Making sureeachpersonwithcutaneous lymphomagets thebest carepossible
C
utane-
ous
T-cell lympho-
ma (CTCL),
including
mycosis fun-
goides and
Sézary syn-
drome forms,
is a complex
disease that can cause affectedpatients
to suffermultiple annoying symptoms.
Patients andproviders alike know that a
comprehensive treatment planmust also
include adiscussiononhow tomanage
the associated aggravating skin symp-
toms like itch, burning, redness,
and scaling.
Thedegree towhich apatient expe-
riences theseproblems can vary fromday
today – and sometimes even fromhour
tohour.Herein are some suggestions on
skin care tohelppatients stay as comfort-
able as possiblewhiledisease-specific
treatments arebeing tried.We share
with you these tips thatwehavegathered
fromour experience treatingCTCL
patients, and also from listening toour
patientswithCTCL.
MOISTURIZE
CTCL, aswell as someof the treat-
ments forCTCL, canmake skindry,
itchy and scaly.Adequatemoisturizing
is akeypart of keeping skinhealthy, by
improving thebarrier function, aswell
as keeping it comfortable. If thedryness
canbedecreased, thenoftenmuchof the
itching can alsobe alleviated.A simple
and effectiveway todecrease skindry-
ness is frequent applicationofmoistur-
izers (alsoknown as emollients).With
somanydifferentmoisturizers on the
market today, itmaybedifficult todecide
whichones touse.Here are some tips to
followwhenmaking a trip to the
drug store:
• Ointments and creamswill provide
thegreatestmoisturizingpower.They
are thebestmoisturizer products touse
on the skinbecause they contain ahigh
content of oil that leads togreater pene-
tration andmore ‘stayingpower’ on skin.
• Avoid lotions as they aremadewith
mostlywater and littleoil.Avoidgels as
they contain alcohol or acetone that can
actuallydry the skin.Avoidmoisturizers
that containperfume anddyes as they
can irritate the skin.
• Applymoisturizers frequently, at
least 2 to 3 times eachday, tokeep skin
fromdryingout. Pleasebe aware that
several productsmayneed tobe tried
before finding theone thatworks best for
your skin.
BATHING / SHOWERING
Excessivelyhotwater can temporar-
ily relieve itch, but it is not recommended
because itmay aggravate the skin and
actuallyworsen itch in the long run.Hot
water canbe irritating andmay remove
natural oils from your skin that help to
keep itwell hydrated.We suggest using
lukewarmwater for bathing and show-
Cutaneous Lymphomaand the Skin:
RecommendedGuidelines for SkinCare
Michael Girardi, MD, Associate Professor of Dermatology, Director,
Residency Program, YaleUniversity School of Medicine
“SkinCare” continuedonpage 13
CutaneousLymphomaFoundation
POBox 374
Birmingham,MI48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
email:
Forum
is publishedby the
CutaneousLymphomaFoundation.
Becauseeachperson’sbodyandresponse to treat-
ment isdifferent,no individual should indulge in
self-diagnosisorembarkuponanycourseofmedical
treatment that isdescribed in
Forum
without first
consultingwithhisorherphysician.
CutaneousLymphomaFoundation isnot responsible
for themedical careor treatmentofany individual.
