Forum, Fall 2012
7
Tawa emphasizes, “education is paramount when it comes
to clarifying cutaneous lymphoma terminology, interpreting
clinical data, and outlining therapeutic plans.” Armed with
a reasonable understanding of their diagnosis, patients are
better able to communicate their concerns with their doctors
and other healthcare providers.
Tawa’s role evolves as patients learn to live with the
manifestations of the disease and the imposition of therapies.
Patients and caregivers are counseled to observe responses
and side effects and to gain confidence with the long-term
chronic nature of this disease. Consequently, she spends a lot
of time helping patients manage nuisances, such as pain, itch
and dry skin. In a majority of cases, the highly visible nature
of cutaneous lymphoma on the skin, sets the stage for early
dialogue about a “lymphoma diagnosis” and its implications as
the patient moves about their world.
Nurses have the opportunity to communicate more often
with patients and can assist them to navigate the myriad
of services offered, including phototherapy, extracorporeal
photopheresis, radiation therapy, infusion centers, transplant
service, pastoral, nutrition, complimentary therapy, palliative,
and hospice care.
Today there are a host of therapies available to cutaneous
lymphoma patients that require unique skills to administer.
From topical steroids to radiation, from extracorporeal
photopheresis to systemic chemotherapies, the Nurse
Practitioner should be proficient and knowledgeable about all
these therapies. And in the last few years new therapies have
been approved and more therapies are on the horizon. There
is a hopeful future for cutaneous lymphoma treatments. The
R&D pipeline contains a number of promising treatments
and technologies.
As a Nurse Practitioner specializing in cutaneous lymphoma,
Ms. Tawa is grateful to the Cutaneous Lymphoma
Foundation, which is growing in its global leadership around advocacy, education and support of cutaneous lymphoma patients and
their caregivers.
suffer from a smoldering, non-progressing form of the disease. Unfortunately, a small portion of patients present with advanced
disease or are in a relapse. These patients present challenges as they require staging and sometimes difficult treatments.
As one of the first people who sees the patient after diagnosis, Ms. Uzelac take this role very seriously. The team takes the time to
explain the disease and try to ease any fears the patients or their loved ones may have. One of the most important jobs is educating the
patients.
Thanks to the Cutaneous Lymphoma Foundation, helping patients with education and support is one of the easiest parts of her job.
The CLF website, brochures and local regional symposia and workshops provide patients with a myriad of opportunities to learn
about their disease and connect with fellow patients and caregivers.
Nurses –
Front Line Soldiers in the Fight Against Cutaneous Lymphoma
- Continued
Marianne Tawa RN, MSN, ANP - continued
Danica Uzelac RN, BSN - continued
Questions to ask your healthcare professional
after diagnosis:
1.
What stage is my CTCL?
2. What treatment is appropriate for my stage of CTCL?
3. Should I get a second opinion?
4. Where can I get treatment? Is there a location near my
home?
5. How many cases of cutaneous lymphoma do you see a
year?
6. How advanced is my stage of disease?
7. Why are you recommending this particular treatment?
8. Are there other treatment options available for cutaneous
lymphoma and what are the pros and cons of each?
9. Is there any written material about the recommended
treatment that we can take home to read?
10. What are the goals of this treatment?
11. How long will the treatment last?
12. What are the risks of this treatment?
13. What are the side effects of this treatment?
14. Are there ways to manage the side effects?
15. How do we know if a side effect is severe enough to
warrant calling you?
16. What do we need to do to prepare for this treatment?
17. Is there anything that’s important to avoid before or
during treatment?
18. Can you tell us what to expect during treatment --
where does it take place, how long does it last, and is it
uncomfortable?
19. How do patients typically feel after treatment, both
immediately afterward and in the days that follow?
20. Is it a good idea to make certain diet or lifestyle changes,
and how can friends and family help with these?
21. Are there any new treatment options or clinical trials we
should be aware of?
22. What’s the best way for us to contact you when we have
more questions about the treatment?
