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Navigating Malignant Melanoma: A Unique Physician, Nurse, and Patient Seminar Series Miami, FL – January 25, 2014 Speakers Katherine Rosenthal, RN, BSN, OCN, CCRP Cedars Sinai Medical Center, Los Angeles, CA Shelby Moneer, MS, CHES Education Program Manager, MRF 1 Objectives Learn how you can manage a melanoma diagnosis Learn what to expect with treatment Understand ways to improve communication with your treatment team Learn how to get involved in clinical trials Learn about patient resources and how you can get involved in the fight against melanoma Hear from other melanoma patients 2 Managing a Diagnosis Questions to ask your doctor – See MRF handout in folder Second opinions Caregivers Be proactive 3 What to Expect with Treatment Side effects of treatment – Pain – Lymphedema – Psychosocial Issues There are many different treatment options and everyone responds differently 4 What to Expect with Treatment Get to know your melanoma treatment team – Nurses, Doctors, Nutritionists, Social Workers, Dermatologists, Spiritual Support There are many different treatment options and everyone responds differently 5 QUESTIONS? 6 Clinical Trial Overview If you are a late stage patient and your doctor hasn’t at least mentioned clinical trials to you, consider finding a new doctor Patient safety is the main focus in a trial – screening process ensures patients meet the eligibility criteria What is considered an ‘acceptable response’? Participating trial sites have regular communication so all parties are continually informed of issues 7 Clinical Trial Overview Consenting for Clinical Trials All trials are voluntary Consent can be withdrawn at any time If you need more time to think about it, just ask Patients on clinical trials are monitored more closely 8 Clinical Trial Drug Development Important notes on trial drugs By the time a drug reaches humans, it has already been tested on animals Patients usually have access to medications that are not available otherwise Side effects should be reported immediately The absence of side effects does NOT mean the drug isn’t working…and vice versa 9 Clinical Trial Common Myths Myth: If I enter a clinical trial, I'll be treated like a guinea pig. Myth: I'm going to get a sugar pill while other patients are getting actual medication. Myth: Clinical trials are too risky for me. Find a clinical trial by visiting the MRF’s Clinical Trial Finder: http://www.emergingmed.com/networks/MRF/ 10 QUESTIONS? 11 Who We Are Research Education Advocacy 12 Patient Resources Educational print materials Ask the MRF Nurse email program Melanoma Patients Information Page (MPIP) Toll-Free Helpline Melanoma Clinical Trial Finder Melanoma patients who are wellinformed and wellsupported, live longer, better lives Volunteer Phone Buddy program Melanoma Treatment Center Finder MRF website Educational webinars In-person educational symposia melanoma.org 13 Get Involved! Become a MELANOMA MESSENGER! – Volunteer to be (or get) a phone buddy – Share educational materials with your community •Doctor’s offices, health fairs, schools, etc. – Put on a fundraiser – Participate in the MRF’s advocacy work •MRF’s Day on the Hill – March 6, 2014 Participate in or volunteer at a Miles 4 Melanoma event 14 Patient Panel John Doe Jane Doe 15 QUESTIONS?