Forum, Fall 2013
Cheryl’s Tips for Staying “Sane” During CTCL Treatment
Cheryl Yasuda was a member of our patient panel at the Patient Educational Forum held in Salt Lake City where she
shared her tips for staying “sane” during her CTCL treatments. It is her hope that they might be of some help to others as
they go through their own treatment plan.
• Keep records:
Use a 3 inch binder to keep copies of all your medical records. Divide sections by labs, radiology,
physician clinical notes, pathology reports, etc. You may be surprised that having a test report may prevent delay in
needed testing. You can obtain actual radiology tests on CD as well as the printed report.
• Interferon Treatment:
While on this treatment Tylenol is your best friend; take at bedtime; use a corn pack, rice
pack or warm wash cloth to warm the injection site before administering the injection; to mix the interferon before the
injection, roll the vial between your hands.
• Total Skin Electron Beam Radiation Treatment
• Hair Loss:
During this treatment you will loose your hair. Most women will want to consider a wig. Wait until
you’ve lost your hair to purchase a wig, because the fit will be different. It is easier to shave your head when your
hair is coming out so fast, it clogs the shower drain and covers your pillow. It is less traumatic to have the constant
reminder, and besides you feel like a shedding dog!
During this treatment you will need to moisturize your skin AFTER each treatment, so bring your
moisturizer with you and ask the nurse to apply to your back, where you can’t reach. Bed, Bath & Beyond does
sell a lotion applicator for $10 found in the “As Seen on TV” section.
• How to deal with difficult days of treatment:
There will difficult days when receiving “bonus” areas of
treatment. It is helpful to sing your favorite song to yourself and remember it will last just a short time.
At this point in treatment, smells may start to bother you. A helpful tip is to put Vick’s Vapor rub up your
nose to block these smells.
• Photophoresis Treatment:
If staff is having a hard time
accessing a vein, ask for the PICC (peripherally inserted
central catheter) team to be called to obtain access. This
treatment is not painful, just time consuming. To fight
boredom, use this time to read, surf the net, or nap.
Choose to think of this as “me” time.
• Targretin Treatment:
May cause photosensitivity---
cover up; skin will get worse before getting better.
• Istodex Treatment
(chemotherapy especially for CTCL)
You may experience significant nausea issues despite
premedication; ask physician to prescribe effective anti-
nausea medications; again, use Vick’s Vapor Rub for smell
Sharing first hand experience of living with cutaneous
lymphoma and its treatment can be a real benefit to others. If
you have any tips or suggestions from your own experience
of living with cutaneous lymphoma, from getting diagnosed,
to dealing with daily living challenges, we encourage you to
share them for submission in the Forum newsletter, posting
on our Facebook page or volunteering to be a member of a
Patient tips and suggestions offered in the Forum are for
informational purposes only. The Cutaneous Lymphoma Foundation
does not endorse any drugs, treatments or products reported in this
newsletter. Users are advised to seek professional medical assistance
in the event that they are suffering from any medical condition.
CHERYL’S BIG LESSONS:
The Scriptures never say “this too shall stay.”
Attitude is everything.
Choose to think of CTCL as diabetes....
can’t be cured yet, but can be controlled.
What cannot be cured, must be endured.
Accept help when offered.
You can’t do everything, so save your energy for
what is most important.
Eat well, sleep well, exercise.
Be flexible in coordination of care.
Worse thing that could happen is to be unpleasant
to my care givers!