2018 Forum-Issue3

Cutaneous Lymphoma Foundation 2018 Issue 3 QUALITY OF LIFE IN CUTANEOUS LYMPHOMA Cancer patients have a lot to worry about when they are diagnosed with their disease: will this affect how long I live? What kind of treatment do I need to do and for how long? What side effects will I experience with the disease and the treatment? How will the disease and treatment affect my life, my ability to work and function, my family? How much will treatment cost? These concerns contribute to health related quality of life (HR-QoL). HR-QoL is a critically important issue to patients. It encompasses 1) disease symptoms; 2) emotions (self image/psychosocial state); and 3) function (performance status - ability to carry on activities of daily living). In 1996, the American Society of Clinical Oncology recommended that when judging the effectiveness of a therapy, HR-QoL was more critically important than tumor response and recommended that it be formally measured in all cancer clinical trials. There are different validated tools (questionnaires) to measure HR-QoL (general, skin, itch). Cutaneous lymphomas patients have not only cancer-related issues that contribute to HR-QoL but also skin- related issues (appearance, itch, skin shedding, wound care, caregiver related issues). In addition, since cutaneous lymphomas are rare diseases, emotional “worry,” financial burden (due to fewer therapies available, lack of generic options, and rising costs of old and new medications) and a sense of isolation also impact HR-QoL. The 2018 US Cutaneous Lymphoma Consortium Workshop, “Assessing and Improving Quality of Life in Patients with Cutaneous Lymphoma,” was held in February in San Diego, CA. In the morning, Dr. Francesca Sampogna and Dr. Margaret Chren, experts in HR-QoL, reviewed the history and tools used to measure HR-QoL in dermatology and future directions From the President and the Chief Executive Officer. ............................................................. 3 Our Journey with Cutaneous Lymphoma......... 4 Celebrating 20 Years of Service................... 6 Skincare Corner Q&A......................................... 8 Clinical Trial Update: SONAR......................... 9 20-20-20 Fundraiser Update........................... 10 Upcoming Events............................................ 11 Save the Date: 2-Day Conference.................12 ce...........................................................12 Living With Cutaneous Lymphoma.. .continued on page 5 Cutaneous Lymphoma Foundation