CLF 2012-13 Annual Rpt - page 4-5

Cutaneous Lymphoma Foundation
2012-2013 Annual Report
It was a beautiful summer
morning in February of 2005. I
stood in front of a mirror after
my shower, looking at the red
patch on the inside of my left
knee. My doctor told me it was
only eczema and not to worry.
I noticed a couple of other
small patches on my belly and
left side. I was determined
to conquer this skin condition during my three-month business
project in Sydney, Australia. With limited distractions, I could
consistently apply an ointment on these patches each morning.
Another assessment, several months later, confirmed my lack of
progress and the discovery of several more patches. The doctor
recommended changing soap and using more ointments and
lotions. In the meantime, I gave up swimming to avoid explaining
my patches to others. I’m sure this tale sounds similar to so
many others dealing with this disease.
Fast forward to November 2009. A new doctor suggested I visit
his dermatologist friend, Doctor Williams. Dr. Williams looked
at the patches and stated he knew what it was. “You will die with
this,” he said. Wow, did I hear that right? My mind was trying to
process that statement. Noticing my dropped jaw, he explained
that what he really meant was I would probably die
disease but not
the disease.
Dr. Williams took a biopsy and sent it to the Huntsman Cancer
Institute and told me to expect a call. A couple of days later I
received a call to set an appointment with Doctor Bowen right
away. After several years of “don’t worry,” there was a sudden
sense of urgency. What was this disease that I had?
The biopsy revealed that I had Cutaneous T-Cell Lymphoma
(CTCL), Mycosis Fungoides (MF) – stage 1B. What a mouthful.
What did it mean and how would it impact my life going
forward? I soon learned it meant I would need to use ultraviolet
light to treat my current patches while increasing my risk for
Melanoma. I would need to take better care of my skin with a
daily application of lotion. I would need to begin my study to
increase my understanding of this rare disease and share my
experiences with my support group to help raise their spirits and
The impact reaches much deeper into my life. No more donating
my highly desired blood type. Now I faced increasing difficulty
getting health insurance as a self-employed business owner and
denial of additional life insurance. But, on the bright side, I
became the envy of family members and friends with my no-line,
full-body tan in the middle of winter.
My trail of treatments included time in a special light box three
times per week at a clinic, then some controlled sun exposure
during the remission period, and finally another remission period
with a continued daily skin care routine. This routine is now my
I don’t know why we each have these challenges placed in our
lives that tend to disrupt our life plans. I do feel blessed to have
met and associated with the many wonderful individuals that
have been put in my path on this modified journey. I’m glad to
have connected with the Cutaneous Lymphoma Foundation and
know that I am not alone on this journey. I am better as a result
and look forward to more opportunities to share my story with
Living With Cutaneous Lymphoma: A Patient’s Story
Gary Robinson
Sarasota Springs, UT
Living With Cutaneous Lymphoma: A Caregiver’s Story
Over the past five
years my husband
and I searched for
answers for his
skin problem that
seemed to become
more severe by the
day. Numerous
dermatologists we
visited said it was
just a severe case of psoriasis and prescribed various lotions
from pharmaceuticals to over-the-counter remedies. However
the itching, pain, rash and skin plaques became progressively
worse and extremely irritating.
Finally, we were referred by a family member who is on the
medical school faculty at the University of Toronto, Canada to
Washington University and the Center for Advanced Medicine at
Jewish-Barnes Hospital in St. Louis, Missouri. Here, Tony was
seen by Dr. Carson, who specializes in Oncology and Internal
Medicine, along with Dr. Anadkat whose field is Dermatology.
Within a short period of time, these two physicians working
together, had diagnosed Tony’s disease as Cutaneous T-Cell
Lymphoma, Mycosis Fungoides.
Treatment began soon after their diagnosis; primarily with Tony
taking 8 Targretin tablets daily and using special lotions and
creams to alleviate the itching.
Before long, this regime began to have a positive effect on his
mood swings, itching and pain. As a caregiver, it was sometimes
difficult for me to meet all of his needs but I did the best I could.
Picking up his meds, making sure his diet was healthy, especially
since he had an aortic valve replaced a few years ago, taking
over all of the household duties which included running errands
myself, doing the driving and making household decisions in
order to take any stress off of him, took up a great deal of time.
In addition to operating my demanding business with its many
deadlines, I found myself caring for Tony around the clock.
However, after a time we began to see his skin greatly improve
and found that he was more at ease with the treatments. We
still must travel to St. Louis by train and stay overnight every
few months, which is costly, but it is well worth it! His doctors
and their staff are kind, encouraging and extremely supportive,
besides being extremely professional and capable. They
patiently answer questions and we trust them completely.
The Cutaneous Lymphoma Foundation has also been very
helpful! The seminars for patients and their families which are
conducted throughout the year are definitely worth the time and
expense to attend them. Meeting staff and other lymphoma
patients has been very good. It’s nice to know we are not alone
on this journey.
As time goes along, we continue living with this rare disease,
but with the help of his doctors and the Foundation, we have
learned to cope with its changing effects on a daily basis.
Without a doubt, we greatly appreciate the continuous flow of
important, helpful information that comes through the efforts of
the Foundation. This organization and everyone associated with
it has our deepest thanks!
“Without a doubt, we greatly
appreciate the continuous flow of
important, helpful information that
comes through the efforts of the
Jean Faust-Gallagher
Sedalia, MO
Using a sense of humor,
Gary shared his cutaneous
lymphoma experience at
the Salt Lake City Patient
Education Forum.
“I...look forward to more
opportunities to share my
story with others.”
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