Living with Cutaneous T-cell Lymphoma: A Nurse s Perspective

Transcription

1 Living with Cutaneous T-cell Lymphoma: A Nurse s Perspective SUE A. MCCANN, MSN, RN, DNC UNIVERSITY OF PITTSBURGH MEDICAL CENTER PITTSBURGH, PENNSYLVANIA [email protected]

2 If I have seen a little further it is by standing on the shoulders of giants. MODERNIZED BY SIR ISAAC NEWTON- 1676

3 Introduction Circa 1987 Lessons quickly learned Loved my job! High tech & high touch Complex disease with wide variety of signs/symptoms Patients and family: Overwhelmingly awesome Felt alone & isolated with chronic illness Wanted/needed information on CTCL Performing ECP at UPMC for patients with CTCL

4 Living with CTCL: The Top 10 To Do List Obtain & use education, information, & resources Maintain skin integrity Increase comfort: Reduce itching and pain Maintain homeostasis (body balance) Prevent infection Balance psychosocial issues Maintain activities of daily living (ADL) Ensure advocacy plan Maintain compliance with treatment plan Address quality of life issues

5 Education & Information Important questions to ask, maybe more than once! What is CTCL? What stage am I? How will you determine what stage I am in and what does it mean? What are my treatment options? Pros/cons of each Side effects Impact on quality of life Cost estimates What is my prognosis? Are there any clinical trials that might benefit me?

6 Education, Financial, and Social Support Organization Services Contact Cutaneous Lymphoma Foundation Leukemia and Lymphoma Society Lymphoma Research Foundation American Cancer Society Patient Access Network Foundation Merck (vorinostat) Celgene (romidepsin) Valeant (bexarotene) Education, advocacy, patient forums/support Financial support, education, support groups Financial support, research grants Broad, generic support, lodging, financial help Financial support for out of pocket medical expense ACT Program; medical question phone line Patient assistance programs Patient assistance programs clfoundation.org Leukemia-lymphoma.org Lymphoma.org Cancer.org Patientaccessnetwork.org Zolinza.com Celgene.com Valeant.com (select oncology)

7 Skin Integrity Skin changes vary greatly Excoriation, scaling, redness, oozing, ulcerated plaques/tumors, fissuring Increase knowledge of basic skin care Self assessment for infection, fissures Bathing techniques Soak & seal Antibacterial baths Injury avoidance Topical therapy application Maintain nutrition and hydration Elevate swollen extremities

8 Good Skin Care Improves skin functions: Protective barrier, temperature control, homeostasis, vitamin D production, sense of touch, self image, wound healing Helps reduce symptoms Dryness Scaling Redness Itching Discomfort

9 Preventing Skin Injury Keep nails short to avoid skin damage Elevate legs if swollen to decrease swelling Helps to decrease inflammation in skin Don t pull or pick at skin Doing so may create a wound Be gentle when removing tape or sticky bandages Skin may tear more easily Use skin adhesive remover if necessary Use antibacterial ointment if cut occurs (ask MD for advice)

10 Examples of Topical Therapies for CTCL Moisturizers and ointments (emollients) Steroid creams/ointments Medicated shampoos Vitamin A gel (Bexarotene gel) Chemotherapies (Nitrogen Mustard) Antibiotics/cleansers

11 Skin Care Tips Use a plastic spoon or tongue blade to remove medications from jar or tub Use enough product to cover skin but not so much it is easily visible on skin Use gentle, fragrance free cleansers Avoid alcohol based products where moisture is needed Wear soft, non-irritating clothing (cottons, blends) Be gentle: avoid scrubbing or rubbing (pat dry) Use warm, not hot water and limit time to minutes Moisturize after bathing

12 Skin Care Tips Soak and Seal Soak in warm water bath or shower Avoid hot water Pat skin dry, avoid aggressive rubbing or over drying Apply ointment or cream within 3 minutes to slightly damp skin

13 Wet Wraps Doctor recommended for very dry, inflamed, irritated skin How to: Take bath/shower Immediately apply prescribed topical agents Apply warm & wet pajamas (wring excess water out and warm in clothes dryer) Cover with thick fleece-type clothes Go to bed or cover up with warm blankets Leave on 6-8 hours if possible

14 Itching Sometimes nothing helps! Important to have this symptom and its severity validated by healthcare providers and family Variable intensity and duration Can be severe enough to cause: Depression Emotional distress Fatigue Insomnia

15 Comfort Management: Itching Antihistamines Sedation side effects & precautions Moisturization Home humidification Interrupt scratch/itch cycle Oatmeal baths Wet wraps Mentholated/cooling topicals Non-irritating clothing Distraction techniques-know what works for you!

16 Tips on Itch Avoid injury: short fingernails, no forks, backscratchers, or door jams Break itch-scratch cycle Use itch medicines as prescribed Cool compresses or ice packs Warm bath/shower then moisturize Oatmeal baths, mentholated lotions (cooling) Get busy, go for walk, use diversion to take mind off itch Have a plan if itch becomes unbearable Humidify home in winter

17 Maintaining Homeostasis or Body Balance Cold intolerance Warm, draft-free environment Avoid exposure to extreme temperatures Inability to sweat in some patients Low grade fever may indicate serious infection Layer clothing Metabolic/laboratory abnormalities High protein, high quality carbohydrates Nutritional supplements, iron, vitamins

18 Comfort Management: Pain Don t be shy! Describe your pain & discomfort Tenderness, burning, throbbing, pressure sensitive (affects clothing choices) Treat for infection if present Pain relief measures Medications Moisturization Special dressings, beds Topical applications Position change, distraction, massage, warm/cool compresses

19 Preventing Infection Vigilant assessment and skin care Altered skin integrity increases incidence of infections Chlorox/Vinegar baths Phisohex showers Topical antibiotics to open wounds Test/treat bacterial carriers with mupirocin Oral antibiotics-skin cultures may be helpful Avoid central lines for medications/infusions

20 Psychosocial Issues Anxiety, fear, anger, denial, depression Diagnosis of cancer and chronic nature of disease Financial burdens, support system strain on family Develop strategies to cope with chronic illness and cancer, referrals, support networks, medications Self image & sexuality Feel trapped within own body, embarrassment, social stigma/misunderstanding with skin disease Strategies to help Allow others to know the real you, positive reinforcement from friends/family and health care providers, consider clothing choices, cosmetic camouflage, wigs, skin care to reduce symptoms Socioeconomic concerns: work pressures, insurance issues, cost of treatment/medications

21 Daily Activity Impact Decreased dexterity and mobility Fine motor skills problematic Adaptive equipment/clothing: Occupational Therapy consult Gloves/socks with medication & occlusion Fatigue/deconditioning Increased risk for falls: Physical therapy consult Consider independence issues, need for supportive care Edema Decreased mobility/comfort Elevate, compression management, adaptive shoes Dry eyes, ectropion (drooping lower eyelids) Decreased vision, increased tearing Consult ophthalmology: artificial tears, possible surgical repair

22 Advocacy: What is IT? Facilitating communications with care team Assisting with navigation through health care system, treatment maze, insurance issues, and multidisciplinary care Ensuring educational needs are met Connecting to available resources Financial Social services Patient advocacy groups Connecting to support systems Advocating for patient rights and the right thing in all circumstances

23 Advocacy: How To Do IT? Ask the question Make the suggestion Repeat the education Initiate the referral Facilitate a connection Permit the second opinion

24 Treatment Compliance Maintain open dialogue at all times Mutual goal setting for treatment plan & desired outcomes Remission Palliation of symptoms Explore any limiting factors Cultural beliefs Lack of funds Transportation problems Insurance coverage Physical endurance

25 Patient Care: Quality of Life QOL Aspect Worry about dying 80 Feel unattractive 62 Bothered by skin redness 94 Bothered by itching 88 Bothered by pain 41 Tired due to disease 66 Feel financially burdened 61 Sleep affected 66 % Indicating Importance Demierre, M. et al. Significant impact of CTCL on patient s quality of life: results of a 2005 national cutaneous lymphoma foundation survey. Cancer 2006 (930 surveyed with 68% response rate).

26 Implications for YOUR Nurse! Provide education and listen to questions Demonstrate & discuss skin care techniques Discuss therapy instructions, side effects, follow up Review information and reassure often Assist with mutual goal setting with patient and health care team Nursing advocacy and influence is important Connect patient to information sources and others with disease Tune in to your patient s QOL issues

27 Living with CTCL: Conclusions Chronic and complex systemic disease with variable presentations Experienced centers for complex cases Nursing care is vital to success with patients Patient education and connecting to others is important Quality of life MATTERS Advocacy critical (local and national)

28 Conclusions New therapies developing through research as evidenced by recent progress Bexarotene (oral & topical), Ontak, Vorinostat, Istodax, topical imiquimod, pralatrexate, nbuvb Increased research (both bench and bedside) Advocacy groups active Patient support at the forefront

29 THANK YOU