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Cutaneous
CutaneousLymphoma
LymphomaFoundation:
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www.clfoundation.org
2014 Issue 2
Tips for Lesion Care
INSIDE THIS ISSUE
From the President and the Chief
Executive Officer............................... 2
My Personal Journey:
Oded Pollack......................................... 4
Fun in the Sun with Cutaneous
Lymphoma................................................ 5
2-Day Patient Conference
Update................................................ 6
Skin Care Solutions.................................8
My Personal Journey:
Gail Baril...................................................9
Upcoming Events...............................10
You Can Make a Difference.............. 11
SID Annual Meeting Highlights .......12
Young Investigator Award..................13
Advocacy Highlights...........................14
New Treatment Guide Available.......16
For many individuals with cutaneous lymphoma, quality of life is directly related
to the current condition of their skin. Daily routine often revolves around finding
relief from itch or caring for lesions to prevent the development of infection. There
are many ways that patients can improve their lives with simple at-home solutions;
educating yourself about these tips can be extremely beneficial in improving your
quality of life.
In this issue, we are pleased to introduce contributing writer, Dr. Meredith Haab.
Through providing hands-on care for her own mother, Gabrielle Schwarz Haab,
Meredith gained insight into lesion care and seeks to share her knowledge with
others in the hopes of improving patients’ quality of life. Encouraged by her mother,
Meredith began the GSH Lesion Care Program with the Cutaneous Lymphoma
Foundation in her mother’s memory. As a part of the program, Meredith will
interview medical professionals concerning lesion
care; her interview with Dr. Bizhan Micaily is
highlighted in this issue.
Dr. Haab’s interview with Dr. Micaily is an
informal, interview-style piece focusing on lesion
care. Highlights include some of Dr. Micaily’s tips
for cleaning, dressing and caring for lesions, as
well as information on treatments such as radiation,
topical solutions and systematic pain management.
Dr. Micaily’s work treating mycosis fungoides is
highly specialized and focuses on the use of the
electron beam radiation (targeted and total skin).
Dr. Micaily is a highly sought-after physician and
we are thrilled to have the chance to share his
recommendations.
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
email: info@clfoundation.org
www.clfoundation.org
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 provided for informational purposes only. Because
the symptoms and severity of cutaneous lymphoma vary among individuals, the Cutaneous
Lymphoma Foundation recommends that all
drugs and treatments be discussed with the
reader’s physician(s) for proper evaluation,
treatment and medical care.
Bizhan Micaily, MD, FACR
Associate Chairperson
Department of Radiation
Oncology, Temple University
Radiation Treatment:
• This disease is sensitive to radiation.
• It responds to low doses.
• The radiation must be tailored to the problem and the person.
• The goal of radiation is: control of lesions (plaques) and ulcerative tumors,
relief of pain, clean up the skin, and make the other cancer treatments (such as
chemotherapy) more effective.
• Radiation can be blocked to save a patient’s hair/mustache/beard.
• Use radiation by an experienced Radiology Oncologist who knows this disease
before it gets too bad.
Topical Anesthetics:
• Come in creams or gels. Use sparingly so as not to cause arrhythmia. Use every
4-6 hours as directed by your doctor.
• Main objective with topical treatment of lesions: to avoid infection. Sudden
Lesion Care..continued on page 11
Cutaneous Lymphoma Foundation
From the President
Issue 2, 2014
From the Chief Executive Officer
In this edition of Forum, the
theme is Quality of Life. This is a
topic that quite frankly, does not
receive the level of attention, that
as a patient, I believe it deserves.
In general terms, Quality of
Life (QoL) can be defined as an
individual’s perceived well-being
or lack thereof and includes all
emotional, social, and physical
Christopher Shipp aspects of one’s life. Within
the healthcare arena QoL specifically refers to how an
individual’s well-being may be affected over time by a
disease, disability, or disorder.
Before I was diagnosed with mycosis fungoides, QoL was
something I largely took for granted, rarely thought about,
and if asked, probably would have said it was related to
how much money a person had and where they lived. I was
young, healthy, VERY LUCKY, and perhaps also a little
naive.
It was not until after being diagnosed with mycosis
fungoides and going through two years of multiple
treatment regimens, that I truly developed an understanding
and appreciation for how one’s quality of life can be so
dramatically altered regardless of financial stature, where
you live, or really anything else for that matter.
I did not tolerate well the systemic treatments I was
prescribed. I was constantly sick and experienced significant
weight loss. With the weight went my strength and stamina.
At my lowest point, I couldn’t walk to my mailbox without
having to take a break.
Surprisingly however, I found the emotional and social
components of my experience to be more deleterious to my
quality of life than what I was going through physically. I
felt as though I was broken and that everyone could see it.
I had lesions on my face, head, and neck that caused me to
feel self-conscious and embarrassed in public. Most of all, I
hated seeing how my illness and everything that goes along
with it was impacting my loved ones.
By elevating the importance of Quality of Life measures
in healthcare and for cutaneous lymphoma specifically, we
can help to improve the overall quality of care and ensure
that patients are treated as a “whole person” with all of the
emotional AND physical help and support they need and
deserve.
I hope you enjoy this edition of Forum.
Best,
Susan Thornton
Don’t you just love summer? It’s
one of my favorite times of the
year. Things slow down, kids are
out of school and vacations are on
the horizon. For us here at the CLF,
summer is a quieter time with fewer
events and programs on the schedule.
It’s time to plan for the next year of
fall, winter and spring programs and
a time for the staff to catch our breath
after the whirlwind of spring events.
Speaking of spring events, we hosted our second annual
2-day patient conference in Kansas City. It was a wonderful
weekend filled with terrific clinical information and
updates as well as a variety of quality of life discussions
ranging from skin care to navigating the financial aspects of
healthcare to ways to manage the emotional roller coaster
that we all sometimes feel we are on. There were great
presentations by patients who were gracious enough to share
their stories, “ah ha’s” and insights into how to live with and
beyond cutaneous lymphoma. Although every live event we
host is special because we get to connect with you, the 2-day
conference gives us much more time to make connections
and bring our community together in a unique way. Mark
your calendar for next year’s program which will be held in
California on June 27 and 28, 2015. We hope you can join
us!
This issue is great reading while you are sitting in your
beach chair or lounging in your hammock this summer. It’s
all about quality of life. One highlight of this issue is Dr.
Akilov’s article about taking care of your skin. Great ideas
about lotions, potions and other methods to care for your
precious skin. Dr. Akilov presented live at the 2-day program
in Kansas City and we took the opportunity to videotape his
presentation. It will be up on the Online Learning Center
soon. When it’s too hot to be outside and you are inside on
your computer, check out the Online Learning Center and the
new videos.
A special thank you to everyone who took the time to answer
our needs assessment survey this May. We are in the final
year of our 3-year strategic plan and are using the feedback
from that survey as part of our strategic planning process.
The Board and staff kicked-off the process at the Board
meeting in June and have begun creating a new 3-year plan
that will go into effect July, 2016. We will be looking at
using technology in new ways so we can engage with more
of you more often and looking for ways to enhance our
research initiatives. If you have ideas or recommendations on
how we can serve you better, please let us know.
Kick-back, relax and enjoy this issue.
Have a great summer!
Forum
The newsletter of the Cutaneous Lymphoma Foundation
ALL RIGHTS RESERVED
MEDICAL EDITOR
Stuart Lessin, M.D.
Cutaneous Lymphoma Foundation is a 501(c)(3) non-profit organization.
Donations are tax deductible to the extent allowed by law.
Check out the latest news and information
from the Cutaneous Lymphoma Foundation
by liking us on Facebook!
Or on Twitter at
#skinlymphoma
BOARD OF DIRECTORS
OFFICERS
Christopher Shipp
Marianne Tawa, MSN, RN, ANP
Jeff Ward
Laurel Carlson
President
Vice President
Treasurer
Secretary
DIRECTORS
Joseph Eischens
Steven Horwitz, MD
Brace Krag
David Lamb
Stuart Lessin, MD
Lauren Pinter-Brown, MD
Mike Silver
Michael W. Young
Director
Director
Director
Director
Director
Director
Director
Director
MEDICAL ADVISORY BOARD
What Is Cutaneous Lymphoma?
Cutaneous lymphomas are cancers of lymphocytes (white
blood cells) that primarily involve the skin. Classification
is based on lymphocyte type: B-lymphocytes (B-cell) or
T-lymphocytes (T-cell).
Cutaneous T-cell lymphoma (CTCL) is the most
common type of cutaneous lymphoma that typically
presents with red, scaly patches or thickened plaques
of skin that often mimic eczema or chronic dermatitis.
Progression from limited skin involvement is variable
and may be accompanied by tumor formation, ulceration
and exfoliation, complicated by itching and infections.
Advanced stages are defined by involvement of lymph
nodes, peripheral blood, and internal organs.
Thomas Anderson, M.D. University of Michigan
Kevin Cooper, M.D. Case Western Reserve University
Madeleine Duvic, M.D. MD Anderson Cancer Center
Francine Foss, M.D. Yale University School of Medicine
Lars French, M.D. Geneva Medical Center
The Cutaneous Lymphoma Foundation’s patient
educational newsletter, Forum, has been
made possible thanks to the following
generous supporters:
Sam Hwang, M.D., Ph.D. The Medical College of Wisconsin
Robert Knobler, M.D. University of Vienna
Thomas Kupper, M.D. Brigham and Women’s Hospital
Liliane Laroche, M.D. University of Paris
Sue McCann, MSN, RN University of Pittsburgh Medical Center
Lauren Pinter-Brown, M.D. UCLA Medical Center
David Ramsay, M.D. New York University
Alain Rook, M.D. University of Pennsylvania
Steven T. Rosen, M.D. Northwestern University
Martin Weinstock, M.D., Ph.D. Brown University
Sean Whittaker, M.D., MRCP Guys & St. Thomas Hospital
Lynn Wilson, M. D., MPH Yale University School of Medicine
STAFF
Hilary Hough Program Manager
Kira Mann Director of Development and Marketing
Holly Priebe Chief Operating and Financial Officer
Susan Thornton Chief Executive Officer
Deb Van Zegeren Administrative and Communications Manager
2
3
Cutaneous Lymphoma Foundation
Issue 2, 2014
My Personal Journey With Cutaneous Lymphoma
Fun in the Sun With Cutaneous Lymphoma !
see the sun while being modest.
Oded Pollack
Gary Robinson
Nomad
I’m Oded, a 49-year-old male,
I was born in Israel and have
lived in the United States
since 1985. I have been a
devoted athlete (Ironman) and
a vegetarian for most of my
adult life. I considered myself
a fit and healthy person and never fathomed that I would
be diagnosed with cancer. I hope my story will help, offer
courage to all of those with cancer and offer support to the
family.
In 2010, my wife and I became world travelers and nomads.
In early 2013, we decided to spend time with my aging
parents in Israel. We had plans to resume travel in South
America in the summer. At the beginning of April 2013,
I noticed the first nodule growing on the top of my head,
which was easily visible as I am bald. Not long afterwards
two more nodules developed on my chest and stomach
area, two red patches on my upper back, and a larger
nodule on my lower back growing increasingly faster. A
total of six nodules appeared within a short period of time.
The lower back nodule quickly turned into a purplish color
and was the only one that was very itchy.
Beginning of Medical Ordeal
I waited a month thinking the nodule was an allergy or
an insect bite, but eventually realized it was time to go
see a dermatologist. It took the dermatologist literally
two minutes before she scheduled a biopsy the following
morning. This marked the beginning of my medical ordeal
and our plans to continue our second leg of travel through
South America was cancelled overnight.
I had multiple blood tests including HIV, HTLV and Gene
Arrangement. After a month I received a phone call that
cancer was suspected and I was scheduled for a full body
PET/CT. The scan showed no evidence of cancer outside
of the tumor on my lower back. Waiting for the results
of every test was extremely stressful for my wife and I,
especially when some results took long periods of time.
In a strange symbolic way, on the morning of July 4, 2013
I attended a medical forum and I was informed that I have
cutaneous lymphoma, more specifically suspected to be
mycosis fungoides. I was stunned! It was a sad day for both
me and my wife.
4
Salt Lake City, UT
I had two sets of radiation directly on the tumor on my
lower back and the nodule on my stomach. All of my
blood tests showed no signs of Sézary Syndrome. I started
managing a folder with my medical records from the
various departments of dermatology, hematology and
radiology. My main physician, a dermatologist, prescribed
PUVA therapy combined with Acitretin 25mg three times a
week.
Feeling Like a Prisoner
The entire time I have felt fine physically and continued my
normal active life of swimming, cycling and drumming in
a couple of bands. I was told I have stage 2B and will need
PUVA treatment for the rest of my life. I was surprised and
could not accept the fact that I will not be able to travel
- I felt like a prisoner. I researched about the notorious
difficulty of the diagnosis and I decided to seek a second
opinion three months after I started treatment.
I found a meticulous, attentive and caring new doctor,
Ilan Goldberg, a head of dermatology at the Cutaneous
Lymphoma unit in Tel Aviv medical center. He evaluated
my pathology and requested further testing, which included
additional Gene Arrangements and a bone marrow biopsy.
The team of doctors indicated I have Pleomorphic Small
Medium T-Cell Lymphoma CD4 Positive. A definitive
diagnosis is very difficult and the doctors indicated that
my results could not rule out a very rare diagnosis of MFTumor Demblee, or CTCL unspecified.
Determining Life’s Direction
All clinical symptoms of the tumor and nodules vanished
and all tests showed no systemic involvement. Finally
a new set of skin biopsies was taken directly from four
different prior infected areas. This was the most stressful
of all tests, as this would determine the direction of my life
- to travel or settle down. Well, I am ecstatic to share I am
back on the road with my backpack! I am in remission!
I encourage everyone who finds themselves one day
dealing with a strange and difficult to diagnose skin disease
to stay informed, join a support group, obtain second or
even third opinions. Most of all, stay positive and hopeful.
set of circumstances.
It is a beautiful summer morning
as Jennifer stands at the window
gazing out at the nearby beach.
She is thinking about the day
ahead and what she will wear.
Although she looks forward to
fun in the sun, she has a special
For the past several months, Jennifer has been receiving
ultraviolet light (UVB) treatment. Her red skin patches
caused by cutaneous T-cell lymphoma (CTCL) are barely
visible now. She looks forward to a reduced treatment
schedule as the patches disappear completely.
In the meantime, a day on the beach is pretty tempting.
Suddenly, she hears her doctor’s voice repeating his
recommendation in her head – “We are using a control
portion of UVB rays to treat your skin, so don’t get more
outside of the treatment. Be sure to cover up and apply
sunscreen when out in the sun.”
She looks at her clothing choices laid out on the bed.
•
•
•
Her favorite swimsuit.
A pair of long pants, a long sleeved cotton shirt (best
at blocking the sun’s rays) and a broad brimmed hat to
keep the sun off her face and neck.
A pair of shorts and a t-shirt.
After some thought, she grabs the shorts and t-shirt to get
ready. She will spend the sunny part of the day inside at the
mall and then visit the beach to see the sunset.
Further down the beach, Jonathan is also looking out at the
beautiful day and making plans.
After those 10 minutes, he has a choice. He can apply a
generous application of SPF 30 sunscreen for the rest of the
day and seek out shade as often as possible, or he can cover
up with long pants and shirt, topped off with a hat.
He decides he could use some exercise. He quickly puts on
the clothing and his favorite broad brim hat and heads out
for a hike down the coast to explore the area.
Tips for Sun Exposure
What will your summer look like? How will you deal with
sun exposure? It depends on your situation and the advice
of your doctor.
Excessive sun exposure is not wise. Be sure to cover up
when out in the sun.
Use a proper sunscreen with at least a SPF 30 rating. Avoid
the peak sun between 11 am and 3 pm if possible. Find
shade when sitting outside. It is important to avoid sunburn.
Wear clothing capable of protecting your skin from the sun.
Use a broad brim hat to protect your face and neck from
the sun. Also protect your eyes with proper sunglasses,
especially if your treatment includes psoralen.
Some limited sun exposure may be good to help maintain a
remission during the summer. Check with your doctor for
recommended frequency. Consider a tan-through swimsuit
to allow exposure to areas that should not be exposed in
public settings. Men should consider a two-layer approach
– a tan through racer style swimsuit to provide support and
then the desired length tan through swim shorts over the
top.
Enjoy the summer and have fun. If people ask why you
are all covered up. Just tell them, “I’ve made an agreement
with Mr. Sun that I would not compete with him for
attention during the day.”
He has completed his UVB treatment and is now in a
remission stage. His doctor’s advice is to get some limited
sun a few times a week. He is encouraged to enjoy about
10 minutes during the middle of the day when the UVB
rays are present (between about 11 am and 3 pm).
He needs to apply lotion to his skin, just like his treatments,
to maximize the penetration of the rays during the 10
minutes. In this environment, he will not be able to expose
“all of him” as he did in the light bay during treatments.
But he has a solution for that. He found a tan-through
swimsuit online to allow exposure to those areas that don’t
This article is informative only. Always consult with your
doctor or health care specialist for medical advice.
5
Cutaneous Lymphoma Foundation
2-Day
Patient
Conference
2014
Issue 2, 2014
Dr. Stuart Lessin
Dr. Daniel Aires
The Cutaneous Lymphoma Foundation’s second
annual 2-Day Patient Conference took place in
Kansas City, Missouri at the end of June. Attendees
traveled from across the United States, as
well as Canada, to hear a wealth of medical
professionals, human service specialists,
patients and caregivers all discuss cutaneous
lymphoma.
The 2014 Cocktail Reception
and Silent Auction was
another success, raising
nearly $7,000 to support
CLF programs. Auction
items ranged from Star Wars
themed baking supplies,
to artwork, as well as an
African Safari. Thank you
to everyone who generously
donated auction
items and to
everyone who
participated in the
bidding.
Topics ranged from methods of diagnosis
and treatment, to research, the practicalities
of insurance and how to build your healthcare
team.
Dr. Stephen Horwitz
Gary Robinson
Recognized at this year’s cocktail reception
for her ten years of service with CLF, was
staff member Holly Priebe (right) pictured
here with CLF Board Member, Laurel
Carlson. Holly serves as CLF’s Chief
Operating and Financial Officer.
Dr. Christiane Querfeld
Dr. Sunil Abhyanker
Interspersed with the clinical
and professional speakers
were the personal stories
of courage, humor and
hope from those living with
cutaneous lymphoma.
Sunday’s program began and closed
with the inspirational stories of
author Donna Hussey and Danna
Wessels. Both women shared their
experience living with cutaneous
lymphoma and having stem cell
transplants. Sunday also included
sessions on the practicalities of
living with cutaneous lymphoma
including skin care, insurance
coverage and dealing with stress.
William Fowler
Dr. Lauren Pinter-Brown
Dr. Oleg Akilov
Marianne Tawa, RN,MSN, ANP
Dr. Garth Fraga
6
Donna Hussey
Brendan Bietry,
Patient
Advocate
Foundation
Danna Wessels
The 2-day conference is also
a social gathering. There
were many opportunities
for attendees to meet,
exchange stories and develop
friendships that will last well
beyond the two days.
Leora Lowenthal, MSW
7
Cutaneous Lymphoma Foundation
Issue 2, 2014
Skin Care Solutions
Oleg Akilov, MD, PhD
Department of Dermatology,
University of Pittsburgh
My Personal Journey With Cutaneous Lymphoma
be changed and/or added into your bathing routine to keep
you comfortable and as irritant-free as possible. Below are
some important factors to consider in regards to bathing:
•
•
Skin care is an important topic for every individual, but
for cutaneous lymphoma patients, skin care can be the key
to greatly improving your quality of life. By educating
yourself about your skin, there are many things that you
can do to keep your skin moisturized, soft and comfortable.
Skin is covered with a thin layer of oil that serves as
a protective agent and seals in water, keeping skin
moisturized. When this layer is removed, or for patients
who do not produce enough oil, skin will quickly dry out
leading to increased discomfort, dryness and redness.
By keeping the skin hydrated and maintaining proper oil
content under the surface, it is often possible to prevent or
improve rashes.
General Tips
Here are a few general tips to keep in mind at home;
keeping skin properly hydrated will help to improve your
daily life:
•
•
•
It is important to maintain a warm temperature and
not allow your skin to become too cold; skin will dry
out faster in cooler temperatures. Humidifiers or flat
pans of water on radiators are also helpful to maintain
moisture in your home, especially the bedroom as
proper sleeping temperatures are very important to
avoid sweating or extreme cold.
When selecting clothing to keep skin comfortable,
opt for fabrics made of cotton and/or cotton-synthetic
blends; wool and pure synthetic fabrics, while warm,
can be irritating and abrasive to the skin. Looserfitting garments are also optimal as tight, close-fitting
clothes may agitate skin. Starch should also be avoided,
especially in bed sheets.
Laundry detergent can affect your clothing and thus
the sensitivity of skin as well. Detergents should be
unscented and free of bleach. Fabric softeners and
dryer sheets should be avoided as well.
Tips for Bathing
Bathing is a topic perhaps not widely discussed, but is
extremely important in skin care. Many simple things can
8
•
•
Water temperature is important when bathing – water
should be kept lukewarm, not hot. Bathing for extended
periods of time is also not recommended as extensive
exposure to water will ultimately dry the skin.
Soap should be used sparingly and it is important
to avoid lathering areas that may already be dry or
irritated. Mild, unscented soaps are gentle and optimal;
avoid perfumes and dyes in soaps. Brands like Dove
Sensitive Skin, Cetaphil, and California Baby are great
options.
The drying process is equally important and bathroom
temperatures must remain cool and as steam-free as
possible. Pat yourself dry (do not rub) with a soft, dry
towel; you may chose to dry off in another room if the
bathroom has become damp or steamy.
After skin has been dried but is still damp, apply a
moisturizer/emollient to seal in moisture.
Following the bathing process, moisturizing is key in
keeping skin comfortable. By understanding the three basic
types of moisturizers, you will be able to select the right
options for your skin:
•
•
•
The first type, occlusives prevent the evaporation of
water from the skin. Examples include petroleum jelly,
mineral oil, lanolin and beeswax.
The next type, humectants contain water-attracting
molecules which grab and hold water in. Examples
include glycerin, propylene glycol, sorbitol and
panthenol.
Lastly, emollients sink into the skin and bind skin cells
back together. Examples are silicones, jojaba oil and
propylene glycol.
While everyone’s skin is different, as a general rule, it is
best to apply a humectant-rich moisturizer immediately
after showering when skin is still damp. Next, apply an
emollient-based moisturizer, and seal everything in with an
occlusive oil.
With the proper care, skin can often be improved in many
cutaneous lymphoma patients. It is important to note that
products do not always have to be the most expensive.
Quality ingredients are much more important than cost.
By knowing the basics about skin care products, you will
hopefully be able to improve your quality of life and live
your best life possible.
Gail Baril
Los Angeles, CA
When asked how cancer changed
her life, Gail Baril replies with
“It hasn’t, I don’t even feel like I
have cancer.” Gail’s story is of a woman full of enthusiasm,
positivity and life.
Gail Baril was born in 1942 and raised in Miami Beach,
Florida. After marrying her husband in 1965, the couple
lived in Mexico City until they eventually relocated to Los
Angeles in 1973 where Gail currently resides.
Gail baffled local doctors for years with her condition.
After undergoing extensive testing, Gail was misdiagnosed
on a number of occasions; doctors came up with dermatitis,
eczema and even Lupus. Frustration set in as a number of
medications failed to improve her health. It was not until
Gail met Dr. Howard Maibach one summer in Aspen,
Colorado that things began to look up. After evaluating
her condition, Dr. Maibach insisted upon Gail coming to
San Francisco to set her up with the UCSF dermatological
department; after a series of biopsies, Gail was ultimately
diagnosed in December of 2009 with Stage 1A mycosis
fungoides.
A perfect representation of Gail is perhaps what she has
chosen to do every year for her birthday: give back to
others. On Gail’s 70th Birthday, her mother gave her a
party; instead of asking for gifts, Gail requested donations
be made to the Cutaneous Lymphoma Foundation. Through
the generosity of Gail’s loved ones, they were able to give
over $7,000 to help others on a journey similar to her own.
Last August Gail decided to coordinate a “Birthday bridge
luncheon” which included 24 of her girlfriends. Along
with her friends and family, Gail hopes to host an annual
luncheon to continue the tradition of giving back.
Gail’s outlook on life makes her a joy to be around –
her cheerful demeanor and positive outlook on life is
contagious. Not many people say that they are “lucky” to
have cancer, but Gail feels that she is lucky because she
doesn’t even know that she has it. She has never asked
“why me?” but instead has chosen to be grateful for the
care that she receives from her doctors. She lives by the
mantra that “I will die with this cancer, not from it.”
Didn’t make it to our annual
2-Day Patient Conference?
Shortly (6 weeks) after being diagnosed, Gail, like any
other new patient had a lot of unanswered questions.
Coincidentally, the Cutaneous Lymphoma Foundation was
holding a Patient Educational Forum in Los Angeles in
January 2010; it was with a twist of fate that Gail connected
with the Foundation and was able to network with other
patients, hear about available resources and gather valuable
information from doctors specializing in CTCL. Thankful
for their efforts, Gail plans to attend the next conference
hosted by the Foundation when they return to the Los
Angeles area.
Gail’s journey with mycosis fungoides has included UVB
phototherapy in conjunction with Targretin. Upon her
diagnosis, Gail was sent to see Dr. Lauren Pinter-Brown
with UCLA. The treatments were effective; Gail was
receiving phototherapy three times a week for about a year
which then tapered down to once every three weeks. Gail’s
outlook on her therapy has always been positive – although
the treatments were inconvenient, she reiterates that she
“doesn’t even feel like she has cancer.”
Plan now to join us in
California in 2015!
Saturday, June 27, 2015
and
Sunday, June 28, 2015
9
Cutaneous Lymphoma Foundation
Issue 2, 2014
Cutaneous Lymphoma Patient Educational Opportunities
The Cutaneous Lymphoma Foundation offers
free Patient Educational Forums throughout North
America providing an opportunity to:
•
Receive the latest information about cutaneous
lymphoma and learn about treatment options
from experts in the field.
•
Learn what’s new in cutaneous lymphoma
research and clinical trials.
•
Q & A sessions - probably the most popular
portion of the day. Have questions about
the different types of cutaneous lymphoma,
treatments, or daily living? The Q & A sessions
provide you an opportunity to ask in a relaxed
and friendly environment.
•
Meet and network with other individuals affected
by cutaneous lymphoma. Being diagnosed with
or caring for an individual with a rare disease can
be lonely, meet others who know and understand
what you are going through.
•
Learn about available resources for treatment and
support.
We hope to see you at an event soon!
August 23: Portland, OR
T-Cell Lymphoma Patient Educational
Forum in collaboration with the T-Cell
Leukemia Lymphoma Foundation
September 13: Montreal, QC,
Canada
Cutaneous Lymphoma Foundation
Patient Educational Forum
September 20: Philadelphia, PA
Lymphoma Workshop in
collaboration with the Lymphoma
Research Foundation
September 27: Milwaukee, WI
Cutaneous Lymphoma Foundation
Patient Educational Forum
Tips for Lesion Care, continued
progress of minimal plaques/lesions doesn’t always
mean progression of CTCL: It could be an infection.
Get treatment from your Doctor right away. Always
be aware of infection or Mersa in areas of ulcerative
plaques or tumors.
Systemic Pain Management:
• May mean the use of narcotics, starting with a low
dose as prescribed by your physician. May be pills or
patches for systemic absorption.
• For pain, hook up with a pain management team/clinic
through your hospital and/or physician.
• Lesions often present on buttocks and groin (and under
arms and breasts, on soles of feet). Sit on a donut to
avoid direct pressure on lesion.
Lesion Care Materials:
• Telfa non-adherent pads- come in varying sizes. You
can always cut the larger ones down to the size you
need.
• Tape – Use sparingly on skin. Silk tape may work
better than the paper tape. You will have to try
different tapes to find which one holds the Telfa pad
over the ointmented lesion the best without harming
surrounding skin.
• Elastinet Tubular Elastic Net Dressing Retainer- these
come in varying sizes from torso to arm and leg widths.
Be sure not to hold bandages on with a tubular net
that’s too tight and cuts off circulation.
•
•
Silver Sulfadiazine Cream, Mupirocin Cream - use as
directed by your doctor. Aids in prevention of infection.
If a lesion becomes infected, do not wait – go right to
your dermatologist/oncologist.
Lidocaine Hydrochloride Jelly, use as directed by your
doctor. Aids in topical pain management of lesion care
however it must be used sparingly so as not to cause
arrhythmia.
Lesions:
I. Patch – not elevated. Level and at skin level.
II. Plaque – elevated. More cells.
III. Tumor – raised. Thick.
Plaques and tumors may become ulcerative. It’s important
to keep them clean to prevent infection.
To keep lesions clean:
Use topical anesthetic (as prescribed by your doctor) if
needed, wait 5-10 minutes until numb, and then wash with
soap and saline. Gently remove any old ointment or dead/
necrotic tissue, if possible.
To dress lesions:
After cleaning, apply a thin layer of ointment (as prescribed
by your doctor) on lesion. For ulcerative lesions/plaques
- cover lightly/gently with a non-stick/non adherent Telfa
pad. For multiple lesions, Dr. Micaily recommends to avoid
using tapes on the skin to hold the Telfa pads in place.
Lesion Care..continued on page 15
The Cutaneous Lymphoma Foundation extends
its thanks to the following generous supporters of
our 2014 Patient Educational Forums:
October 11: Denver, CO
Cutaneous Lymphoma Foundation
Patient Educational Forum
October 24 -25: Manhattan Beach, CA
North American Educational Forum on
Lymphoma in collaboration with the
Lymphoma Research Foundation
This is not a free event.
You Can Make A Difference
Are you looking for a way to get involved and support the CLF in our mission? Host
your own fundraiser and make a difference in the lives of those affected by cutaneous
lymphoma.
Whether you are interested in hosting an online or live event, the CLF can help make the
fundraising process easier and support your efforts. With our new online tools, you can
create your own personalized CLF online fundraising page and invite your friends, family
and colleagues to join you in raising funds for the CLF.
Looking for event ideas…big or small, there’s something you can do!!
November 15: Fort Lauderdale, FL
Cutaneous Lymphoma Foundation
Patient Educational Forum
For more information and to register for these events, visit www.clfoundation.org or call (248)644-9014
10
•
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•
•
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•
Walk-a-thon
Golf Outing
Themed parties
Bake sale
Dinner party
Special dress day
•
•
•
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•
Silent Auction event
Car wash
Karaoke night
Gala
Dance-a-thon
Birthday or anniversary celebration
For more information on how you can host a fundraising event, please contact Kira Mann,
Director of Development and Marketing at kira@clfoundation.org or (248) 797-2399.
11
Cutaneous Lymphoma Foundation
Issue 2, 2014
Highlights from the Society For Investigative Dermatology Annual Meeting
The Society for Investigative Dermatology (SID) Annual
Meeting is a scientific program incorporating research
from multiple specialties and disciplines. It offers a broad
array of special tracks, symposia, and networking sessions.
This year’s annual meeting was held in Albuquerque, New
Mexico, in May. Cutaneous Lymphoma Foundation’s
CEO Susan Thornton attended the annual meeting to learn
about the advances in cutaneous lymphoma research and
to raise awareness of the disease among the attending
medical professionals. The following are her notes from the
sessions.
Research Presentations
Ten individual scientific research summaries were
presented reflecting everything from bench to clinical
research. In addition to the ten presentations, there were
27 posters displayed specifically related to research in
cutaneous lymphoma. The exciting news is that with new
diagnostic technologies and research into new treatment
approaches, investigators are continuing to learn more
about the underlying biology of cutaneous lymphomas
which may result in finding specific biomarkers for the
variations of the disease. Biomarkers can provide insights
into the potential for disease progression in an individual
as well as help in the development of targeted therapies for
specific markers and hopefully one day a cure.
•
•
Highlights from the ten presentations:
•
Promising clinical activity hs been seen in a novel,
first-in-class topical HDAC inhibitor designed to
maximize activity in the skin but limit systemic
exposure as it is delivered topically versus systemically.
New clinical trials will be opening in the future by
TetraLogic who will be working with investigators
to continue the studies to determine the long-term
outcomes of this new topical formulation (SHP-141 is
the current product name).
•
Results of a phase 1 trial of Resiquimod gel in patients
with stage IA-IIA who had failed an average of 4
previous treatments, showed that this topical agent
induces systemic immune activity and is highly
effective in the treatment of resistant CTCL lesions,
especially in patients with folliculotropic MF.
Translational research is being done in the laboratory
to determine if there was greater cancer cell death
using enhanced methotrexate mediated epigenetic
manipulation (ePDT) versus the standard photodynamic
therapy. The conclusion is that ePDT is superior to
conventional PDT by allowing greater activation for
extrinsic apoptosis, which results in enhanced tumor
cell death. Data provides a rationale for clinical trials of
ePDT for CTCL.
Cancer cell metabolism is characterized by a
high glycolytic rate under normal conditions, a
•
•
12
•
phenomenon known as the Warburg effect. The mTOR
(mammalian target of rapamycin) signaling pathway
is a master regulator of cancer cell proliferation and
metabolism. Using a mouse model, the research
project demonstrated the therapeutic anti-tumor effect
of topical rapamycin in a murine model of CTCL
characterized by inhibition of aerobic glycolysis, which
counteracts the Warburg effect of the lymphoma cells.
IL-10 is a potent immunosuppressive cytokine that
has been reported to be in higher levels in the skin of
patients with advanced stages of CTCL. It is unclear,
however, if IL-10 is a marker of advanced disease or
if it is required for the production of tumors. A study
showed that IL-10 was significantly increased in the
skin of CTCL patients compared to normal skin and
significantly higher in plaque stage disease compared
to patch stage disease. The patient data confirms that
IL-10 is up-regulated in the skin of advanced CTCL
patients and the mouse models showed that IL-10 is
required for maximal tumor development. This data
supports the potential use of anti-IL-10 as therapy for
advanced CTCL. Higher levels of IL-10 is associated
with mycosis fungoides (MF) progression. IL-10 is an
immunosuppressive cytokine and could be a potential
biomarker for disease progression.
Mycosis fungoides and Sézary Syndrome are clonal
T-cell lymphomas involving the skin. The diagnosis
is often difficult because of significant clinical and
histopathologic overlap with inflammatory disease or
other T-cell lymphomas. Suspected peripheral blood
involved by Sézary cells is routinely evaluated by
flow cytometry and/or T-cell receptor (TCR) gene
rearrangement assessed by polymerase chain reaction
(PCR). In cases with blood involvement, establishment
of the same clone in blood and skin is often essential
for optimal interpretation and diagnosis. However,
routine TCR/PCR may not identify the true clonal TCR
gene rearrangement, especially in low burden disease.
High throughput sequencing (HTS) is a technology
that analyzes TCR gene rearrangement with real
time high sensitivity. This study assessed the utility
and performance of this emerging technology in the
diagnostic setting. The results highlight the potential
of TCR HTS and its clinical application to improve the
diagnosis, staging and follow-up study of people with
CTCL.
MF and SS are two major forms of CTCL characterized
by resistance to cell death. A central pathway for T-cell
death is activation-induced cell death (AICD) which
is triggered through the T-cell receptor (TCR). This
results in up-regulation of Fas-ligand and through
the Fas death receptor pathway. It is known that TCR
signaling is defective in CTCL, but the underlying
mechanism has not been apparent. These findings
help explain the molecular pathogenesis of CTCL and
provide a preclinical rationale for clinical trials.
•
•
Cutaneous CD30+ lymphoproliferative disease
(CD30+LPD) characterized by the presence of CD30+
anaplastic large T-cells, comprises the second most
common group of cutaneous T-cell lymphomas (CTCL)
However, little is known about the pathobiology of the
CD30+ lymphoma cells, or the mechanisms of disease
progression. These experiments define a novel pathway
in malignant CD30+ T lymphocytes and indicate the
potential of a therapeutic target for CD30+LPD.
Lymphomatoid Papulosis (LyP) is a CD30+
lymphoproliferative disorder thought to represent an
indolent, self-regressing form of CTCL. It is not clear
why clonal T-cells are destroyed by the immune system
in LyP but not in MF. Given the presence of neutrophils
in LyP lesions and finding that IL-17 is down-regulated
in MF, the hypothesis is that IL-17 production may be
increased in LyP and may enhance immune detection.
Direct examination of the phenotype and cytokine
production by clonal cells in LyP is underway.
•
Highlights from the General Sessions and Posters
27 specific posters related to cutaneous lymphoma. Ten
were highlighted at the International Society of Cutaneous
Lymphoma (ISCL) meeting, two were presented within
other sessions during the course of the conference.
Highlights from two additional cutaneous lymphoma
research presentations are as follows:
•
Impact of treatment for cutaneous lymphoma on
persistent and difficult itch. IL-31 is a cytokine thought
to be produced primarily by skin-homing cells and by
clonal malignant T-cells. IL-31 has recently has been
suggested as an important mediator of itch in atopic
dermatitis and CTCL. Notably, higher IL-31 serum
levels correlate with the degree of itch experienced.
Data from the study exposed the relevance of blocking
the IL-31 pathway for symptomatic relief of patients
with difficult itch in CTCL and potentially other
conditions.
CTCL is a rare cancer with a documented incidence
estimate at 4-8 cases per million individuals per year.
Currently, the pathogenesis of CTCL remains only
partially understood. Reports of incidence in married
couples and families raise a possibility that there might
be an important environmental trigger for this disease.
However, to date no unequivocal geographic hotspots
have been documented for this cancer. An analysis was
done by region, zip code, age and ethnicity with the
demographic data of 1047 patients from Texas who
were seen in a CTCL clinic at MD Anderson Cancer
Center during 2000-2012. In addition, de-identified
data on CTCL incidence was requested from the
Texas Cancer Registry database between 1995-2010.
Both data sets were cross-analyzed and compared.
The analysis documented geographic clustering of
patients in three communities within the Houston
metropolitan area, in which the CTCL incidence rates
were 10-50 times higher than the expected population
rate. Moreover, analysis of incidence rates in these
communities over time suggests a significant increase
in the disease after 2005. The data results from the
Texas Cancer Registry database defined the CTCL
population rate for the state to be 5.57 cases per million
per year. The TCR database confirmed the above
findings and highlighted four additional geographic
hotspots for CTCL within the state of Texas, but
outside of the Houston metropolitan area. Identification
of geographic clustering for CTCL argues for existence
of yet unknown external causes in triggering this rare
cancer. In addition, six cold spots were highlighted, two
cold spots were in dry areas of Texas pointing to the
possibilities that there is less CTCL in dry arid areas.
More analysis is needed across the country to identify
other hot and cold spots to determine any potential
correlation between the geographic locations and
CTCL incidence.
Young Investigator Award Presented at SID
The Cutaneous Lymphoma Foundation was pleased to announce that Filiberto
Cedeno Laurent, MD, PhD, was the recipient of its Young Investigator Award
(YIA) travel grant to the Society of Investigative Dermatology Annual Meeting.
Dr. Laurent’s research focuses on the reduction of IL-31 expression to suppress
pruritus (itch) in cutaneous T-cell lymphoma. “We are thrilled to support Dr.
Laurent in his efforts to better understand itch in cutaneous lymphomas,” said
Susan Thornton, Chief Executive Officer, Cutaneous Lymphoma Foundation.
“Itch is often one of the most debilitating symptoms for patients suffering from
this rare disease, and one of the most difficult for researchers to understand. His
findings could potentially change the lives of thousands of patients impacted by
itch, not only with cutaneous lymphoma, but other diseases as well.”
Dr. Laurent is currently a first year resident and cutaneous oncology fellow at the
University of Pennsylvania.
Cutaneous Lymphoma Foundation CEO,
Susan Thornton with YIA recipient, Filberto
Cedeno Laurent, MD, PhD.
13
Cutaneous Lymphoma Foundation
Issue 2, 2014
Advocacy Highlights
Annual Capitol Hill Briefing - National Patient
Advocate Foundation, April 30, Washington, DC
The briefing held for congressional representatives
highlighted the impact of medical debt, medical bankruptcy
and the impact on people in the US who face these
challenges due to a medical crisis. The call to legislators
was for legislation to modify the
bankruptcy code to reflect medical
debt as a separate type of debt.
Medical expenses contribute to
62% of bankruptcy cases in the
United States, while one out of
every five American families will
struggle to pay a medical debt this
year.*
Medical debt is a large and
widespread problem in the United
States, affecting both the insured
and uninsured. The message
to legislators was that medical
expense-related debt is not defined
or given any specialized treatment in the United States
Bankruptcy code. Today it is not possible for a patient to
file for “medical expense-related” bankruptcy and this
can add to the trauma already suffered by people trying to
deal with a health challenge. Legislation that appropriately
addresses the unique and unpredictable nature of medical
debt is critically needed to provide protections for those
patients already overwhelmed with medical debt as well as
for future patients.
See NPAF infographic on their website (www.npaf.org) for
additional statistics around America’s medical debt crisis.
*David U. Hammelstein, MD, Deborah Thorne, PhD,
Elizabeth Waren, JD, Steffie Woodlhandler, MD, MPH.
“Medical Bankruptcy in the United States, 2007: Results
of a National Study.” American Journal of Medicine,
2009. http://www.pnhp.org/new_bankruptcy_study/
Bankruptcy-2009.pdf
Science and Progress at the FDA: A
Congressional Briefing on the Progress of the
FDA’s Breakthrough Therapies Program - May 6,
Washington, DC
David Lamb, CTCL patient and CLF Board member,
attended the panel on Science and Progress at the FDA,
sponsored by Friends of Cancer Research, on Capital Hill.
The theme was how to get new drugs to patients faster with
more efficiency. FDA officials and others agreed progress
has been made. The vehicle for the progress seems to be the
Breakthrough Therapy Act, which was signed into law in
July, 2012 with bipartisan support and was included as an
14
amendment to the FDA’s Safety and Innovation Act.
A new drug may be designated as a breakthrough therapy
if it is intended to treat a serious or life-threatening disease
and preliminary clinical evidence provides a substantial
improvement over existing therapies. Once a breakthrough
therapy designation is granted, the FDA and drug sponsor
work together to determine the
most efficient path forward.
Additional details from the
briefing can be found on the
Friends of Cancer Research’s
website:
http://www.focr.org/events/
science-and-progress-fdafriends-cancer-researchcongressional-briefingprogress-fdas
Spring 2014 Policy
Consortium - National
Patient Advocate
Foundation, May 21, Washington, DC
End-of-Life Care: Confronting Legal, Ethical and
Financial Challenges
The theme of this Policy Consortium discussed a delicate
and many times difficult topic, end-of-life care. In
attendance were members of the US Congress, current and
former officials of the Centers for Medicare and Medicaid
Services, along with representatives from the insurance,
biopharmaceutical, academic and clinical provider
organizations. The goal of this Consortium was to expand
the discussion and commitment the development and
enactment of policies to enhance end-of-life care. The panel
discussions centered around bringing this conversation
to people earlier in the healthcare cycle before the endof-life crisis hits and thinking outside of the “healthcare”
silo when looking at solutions to the high cost of care at
the end-of-life, the psychosocial and financial impact on
patients and their families. The CLF was one of many
patient organizations represented and actively participated
in the panel discussions providing the perspective of the
cutaneous lymphoma community.
National Leadership Summit on 340B - June 10,
2014, Washington, DC
The CLF’s CEO, Susan Thornton, was invited to
participate in this inaugural summit as one of three patient
organization delegates among a total of 33 esteemed
leaders from provider groups, academia, industry, think
tanks, analysts and other policy experts.
The 340B Drug Pricing Program requires drug manufacturers to provide outpatient drugs to eligible health care
organizations/covered entities at significantly reduced prices, however these price reductions don’t always trickle down to
the patient. The federal policy dialogue on 340B has been heating up over the last few months, particularly in anticipation
of the forthcoming Health Resources and Services Administration (HRSA) comprehensive “megarule”, which may be
released in late June. The meeting highlighted emerging evidence on various aspects of the 340B discount drug program and
the program’s full impact on health care delivery systems. A presentation by Krista M. Pedley, the Director of the Office of
Pharmacy Affairs for HRSA provided an update on how the program can be better managed and regulated.
Throughout the day there was active discussion among the various delegates which invited multiple points of view on
key issues impacting the 340B program and elicited recommendations for action from among the various perspectives
represented.
This was the first of what the organizers hope will be additional discussions related to the impact of this policy on health
care provided in the US. Although one small aspect of the health care delivery system, it could be one that brings about new
solutions proposed by a multi-stakeholder group that results in a positive outcome for everyone. The CLF was honored to
provide a patient perspective into the discussion.
For additional information about the 340B drug discount program can be found in:
HealthAffairs Blog - “The Coming Storm Over the 340B RX Drug Discount Program” by Billy Wynne, May 6, 2014
CQ HealthBeat - “Court Decision Could Delay Release of 340B Drug Program Rule” by Kerry Young, CQ HealthBeat, May
27, 2014
The Wall Street Journal - “How ObamaCare Hurts Patients - The 340B program was meant to help about 90 hospitals buy
drugs to treat the poor. Now 1,675 hospitals qualify.” by Scott Gottlieb, July 30, 2013
Tips for Lesion Care, continued
Instead, he recommends the elastinet tubular netting. Be
careful to use the correct size of tubular net so as to avoid
cutting off circulation or putting too much pressure on the
lesions. If you do use tape, silk tape seems to hold pads
with ointments better than paper tape, but you’ll have to try
tapes to find what works AND is most gentle on the skin.
Use the tape sparingly, trying not to cover too much skin
with it.
If a bandage is stuck to a lesion:
• Soak a clean white wash cloth or towel in warm water
in the sink or in a plastic tub.
• Lay the warm, wet cloth over the stuck bandage.
• Let it sit for a while. Be sure the cloth is soaking wet
•
•
•
with warm water.
You may need to repeat this several times.
Remove the cloth and gently rub a loose edge of the
pad/bandage back and forth, a little at a time, to gently
lift it off the ulcerative lesion/plaque a little bit at a
time.
If it’s still stuck – DO NOT RIP THE BANDAGE OFF
LIKE A BANDAID- Repeat the warm cloth soak until
the bandage can be gently removed.
Do lesion care dressing changes 1- 2 times each day or as
recommended by your doctor.
To Order Tubular Elastic Net Dressing Retainer:
Brennen Medical, Inc.
1290 Hammond Rd.
Saint Paul, Minnesota 55110
800-328-9105
This article is informative only. Always consult with your doctor
or health care specialist for medical advice.
15
NON-PROFIT
US POSTAGE PAID
BIRMINGHAM MI
PERMIT NO 265
PO Box 374
Birmingham, MI 48012
TIME SENSITIVE MATERIALS ENCLOSED
New Treatment Guide Available
We are excited to make available our new treatment guide,
Understanding Treatment Options in Cutaneous Lymphoma.
As a supplement to our Patient’s Guide to Understanding
Cutaneous Lymphoma, the treatment guide provides an
overview of current treatment options for cutaneous T-cell
and B-cell lymphomas.
We hope you find the treatment guide informative
and and will help prepare you for discussions with your
health care provider concerning the best treatment
options for you.
To Request Your Guide:
Online: Visit www.clfoundation.org/TreatmentGuide
to download the Treatment Guide and order
copies.
Call/Email: Contact us at 248.644.9014, ext. 1 or
info@clfoundation.org to place your order.