2016 2-Day Patient Conference - New York

The CLF's 2-Day Patient Conference held in October 2016 took advantage of the 3rd World Congress of Cutaneous Lymphomas also happening in New York that week. The program included an impressive number of international cutaneous lymphoma experts from the scientific meeting. Additionally the presentations include: an update on diagnostic tools, nutrition and an inspirational story of living with chronic cancer.


Answers from the Experts: Cutaneous Lymphoma Overview
Ellen Kim, MD, Perelman School of Medicine, University of Pennsylvania

Dr. Ellen Kim provides an overview of cutaneous lymphomas, addressing common questions concerning:

  • Non-Hodgkins Lymphoma
  • Blood involvement
  • Importance of knowing your subtype
  • Why it takes so long to be diagnosed
  • Value of multidisciplinary approach to care
  • Cause of disease
  • General principles of treatment
  • Relationship between the clinical and pathology in diagnosis
  • Multiple biopsies

Answers from the Experts: Early Stage Disease Q&A
Ellen Kim, MD, Perelman School of Medicine, University of Pennsylvania
Marianne Tawa, RN, MSN, ANP, Dana Farber Cancer Center

A question and answer session related to early stage cutaneous lymphoma.

Question topics include:

  • How do I know my stage? Will my stage change?
  • What prompts a skin biopsy?
  • Why does it take so long to diagnose?
  • What is proper skin care?
  • Do patches and plaques present themselves differently?
  • Does the disease always need to be treated with early-stage?
  • Is it common to feel "uncomfortable" and "lethargic"?
  • How does the relationship between the clinical and pathology effect diagnosis?

Answer from the Experts: Sezary Syndrome & Transformed Mycosis Fungoides
Steven Horwitz, MD, Memorial Sloan Kettering Cancer Center

An overview of Sezary Syndrome, how its diagnosed, how it differs from mycosis fungoides and how its treated. Also an overview of large cell transformation of mycosis fungoides, what it is and how it is treated.


Answers from the Experts: Children & Young Adults
Emmilia Hodak, MD, Rabin Medical Center, Beilinson Hospital, Sackler School of Medicine, Tel-Aviv University

An overview of cutaneous lymphoma as it relates to children and young adults, including:

  • Incidence of cutaneous lymphoma in children and young adults
  • How the disease presents
  • Treatment differences

Answers from the Experts: Pathology
Alistair Robson, BSc (Hons), MBChB, FRCPath and DipDermRCPath
Consultant Dermatopathologist, Lisbon Institute of Oncology

An overview of the pathology of cutaneous lymphoma and its role in diagnosing the disease.

Dr. Robson covers the following topics:

  • What is cutaneous lymphoma? 
  • Why does it happen?
  • How does a pathologist diagnose it?
  • What does it look like under the microscope?
  • Why is diagnosis sometimes delayed & difficult?
  • How can the pathology help direct treatment?

Answer from the Experts: Radiation Therapy
John O'Malley, MD, PhD, Harvard Medical School, Brigham and Women’s Hospital

Dermatologist John O'Malley explains how radiation therapy works and how its used in treating cutaneous lymphomas: localized electron beam therapy, total skin electron beam therapy and brachytherapy.

Q&A Session followed with topics including:

  • Is it usual to follow total skin electron beam therapy with systemic chemotherapy?
  • How might facial lesions be treated?
  • How frequently can total skin electron beam therapy be repeated?
  • How frequently can localized electron beam therapy be repeated?
  • Can radiation be used on open lesions or lesions that are not healing?
  • Romidepsin, dose reduction and Sezary Syndrome
  • Recurrence of lesions and type and length of treatment
  • Effectiveness of Doxil in treating cutaneous lymphoma
  • What determines how actively "clear" skin may be pursued?
  • What treatment can safely be used around the eyes?

Q&A Panel:
Ellen Kim, MD, Perelman School of Medicine
John O’Malley, MD, PhD, Harvard Medical School, Brigham and Women’s Hospital
Marianne Tawa, RN, MSN, ANP, Dana-Farber Cancer Institute


Cutaneous Lymphoma International Consortium Introduction
Julia Scarisbrick, MBChB, FRCP, MD, University Hospital Birmingham
Maarten Vermeer, MD, PhD, Leiden University Medical Centre

An overview of the Cutaneous Lymphoma International Consortium's (CLIC) work in developing a prognostic index for mycosis fungoides and Sezary Syndrome - the PROCLIPI Study. And an overview of the creation of a CLIC Study Biobank to test potential biomarkers in cutaneous lymphoma patients to give clinical information on prognosis and optimal therapy.

A Q&A sessions followed with questions concerning:

  • Where do donated biopsies go? Informed consent when tissues are used in studies.
  • Is it possible to participate in the CLIC study?
  • Is there a correlation between the incidence of cutaneous lymphoma and other cancers in the same person?
  • Is a mathematical model for predicting disease possible?

Answers from the Experts: Diagnostics in Cutaneous Lymphoma
Ilan "Lanny" Kirsch, MD, Adaptive Biotechnologies

Dr. Kirsch presents on advances made towards the use of immune profiling (immunosequencing) to help diagnose and treat cutaneous lymphoma.


Answers from the Experts: Cancer Kitchyn Sync
Cathy Leman, MA, RD, LD, Founder and President, NutriFit, Inc.

Nutritionist and dietician, Cathy Leman provides a three-step method for aligning individualized nutrition with personal health goals when living with cancer.

Cathy Leman is the founder and president of NutriFit, Inc., a Chicago-area fitness studio and nutrition therapy private practice. She is a registered, licensed dietitian, certified as a personal trainer through the National Strength and Conditioning Association, and holds a masters degree in health psychology.


Living Above Chronic Cancer
Stephen Brown, Cancer Survivor

Inspirational speaker Stephen Brown shares his personal story as a cancer survivor and his "keys" to living above his diagnosis.