2017ForumIssue2

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible Forum Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible Cutaneous Lymphoma Foundation PO Box 374 Birmingham, MI 48012-0374 telephone: (248) 644-9014 fax: (248) 644-9014 email: info@clfoundation.org www.clfoundation.org Forum is published by the Cutaneous Lymphoma Foundation. Editor: Hilary Romkey Layout & Design: Bridget Safadi Disclaimer The Cutaneous Lymphoma Foundation does not endorse any drugs, treatments or products reported in this newsletter. Information is provided for informational purposes only. Because the symptoms and severity of cutaneous lymphoma vary among individuals, the Cutaneous Lymphoma Foundation recommends that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment and medical care. www.clfoundation.org INSIDE THIS ISSUE From the President and the Chief Executive Officer .............................. 2 My Journey with Cutaneous Lymphoma.......................... .............. 4 Caregiving in Cutaneous Lymphoma: A Pilot Study to Explore the Concepts .... ................................ 6 Upcoming Events............................... 8 Caregiving: A Personal Journey............................................... 9 Skin Care Corner. ............................ 10 2-Day Highlights............................... 11 New in September........................... 12 Being diagnosed with cutaneous lymphoma can be a difficult time. Significant anxiety can develop in having a new diagnosis of not only a cancer, but also one that is very rare, and of which many people are not aware. Additionally, as cutaneous lymphoma is a cancer of white blood cells within the skin, it can be even more confusing trying to figure out which physician (dermatologists, hematologist, oncologist) to work with. After you are diagnosed with cutaneous lymphoma, with skin biopsy or blood work, I recommend (if possible) seeing a specialist within the field at least once. Most of the specialist locations are available on the Cutaneous Lymphoma Foundation website. You will likely undergo a workup to fully stage your disease - physical exam, blood work, and possibly imaging (CT scan, etc…). This will help your physician better develop a treatment plan for you. If your disease has been diagnosed only within the skin, it is reasonable to seek out a dermatologist. You will likely need skin-directed therapy and this is generally accomplished through topical creams and gels as well as phototherapy, which is most often found in dermatology offices. Alternatively, if your disease has been identified in the blood or lymph nodes, you may want to consider seeing a hematologist or oncologist, in addition to a dermatologist. Your treatment will likely consistent of both skin-directed as well as systemic therapy (pills, shots, infusions). As some hematologists specialize in non-malignant blood conditions, and conversely some oncologists do not routinely treat blood-based malignancy, it can be helpful for you to inquire about the conditions treated by your physician prior to your visit. Additionally, there are dermatologists who may not be comfortable treating cutaneous lymphoma. Again, it will be of benefit to reach out to the clinic to ensure he or she will be able to appropriately care for you. Oftentimes dermatologists and hematologists/oncologists work closely together to care for their cutaneous lymphoma patients, especially at the treatment centers specified on the Foundation’s website. When a patient has more advanced disease, with both skin and systemic involvement, this is my preferred approach. I share the care of these patients with my fellow hematology/ oncology physicians. Through their varied perspective and experience, I feel that dermatologists and hematologists/oncologists can work together to better Which Type of Doctor Should I See and When? Laura McGirt, MD Carolinas Medical Center/Levine Cancer Institute Charlotte, NC 2017 Issue 2 Which Type of Doctor?...continued on page 11

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