Navigating Malignant Melanoma: A Unique Physician, Nurse, and Patient Seminar Series Miami, FL – January 25, 2014

Speakers 1  Katherine Rosenthal, RN, BSN, OCN, CCRP Cedars Sinai Medical Center, Los Angeles, CA  Shelby Moneer, MS, CHES Education Program Manager, MRF

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Clinical Trial Overview Consenting for Clinical Trials  All trials are voluntary  Consent can be withdrawn at any time  If you need more time to think about it, just ask  Patients on clinical trials are monitored more closely 8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: 10

QUESTIONS? 11

Who We Are 12 Research AdvocacyEducation

Patient Resources 13 Melanoma patients who are well- informed and well- supported, live longer, better lives Melanoma Patients Information Page (MPIP) Toll-Free Helpline Melanoma Clinical Trial Finder Melanoma Treatment Center Finder MRF website melanoma.org In-person educational symposia Educational webinars Volunteer Phone Buddy program Ask the MRF Nurse program Educational print materials

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?