2018 Forum - Issue 2

Cutaneous Lymphoma Foundation 2018 Issue 2 LIVING WITH CUTANEOUS LYMPHOMA How do I live with a rare type of cancer that most people have never heard of, including many physicians? How do I plan my life when there are so many unknowns about my disease, how do I best treat it, and what might my future hold? Do I have a future? Nearly all of my cancer patients have these kinds of questions when they are first diagnosed. My patients with cutaneous lymphoma often have a more difficult time finding an answer to these questions because cutaneous lymphoma is a rare cancer with widely differing prognoses. There are some types of cutaneous lymphoma that are easy to manage and may never cause any serious problems, and other types of cutaneous lymphoma that become life threatening. Because it is a rare disease, there is no readily available shared experience with others. Very few people “know” how to live with cutaneous lymphoma when they are first diagnosed; you have to learn to live with cutaneous lymphoma. Educate yourself about your disease. The Cutaneous Lymphoma Foundation has specific information for most of the various types of cutaneous lymphoma available online and in printed booklets. Ask your physician questions and don’t settle for general non- specific answers. Attend education forums to learn more about your disease and to meet others who have cutaneous lymphoma. Go to or, if needed, organize local get-togethers with other cutaneous lymphoma patients. The collective wisdom of others with this disease is vast and there may be someone out there who has figured out how to manage a particular symptom you are dealing with. It is not easy living with a disease that others have not heard of or understand; use what you know to help and educate others. Living with cutaneous lymphoma also means being your own advocate. Sometimes you have to push to get the most appropriate treatment or to be able to see the most appropriate From the President and the Chief Executive Officer. ............................................................. 3 Our Journey with Cutaneous Lymphoma: Becoming Empowered......................................... 4 Clinical Trial Update: FLASH Study. ............... 5 2-Day Patient Conference Highlights............. 6 Skincare Corner Q&A........................................... 8 Upcoming Events............................................ 11 20-20-20 Fundraiser ..........................................12 ce...........................................................12 Living With Cutaneous Lymphoma...continued on page 7 Cutaneous Lymphoma Foundation

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