February 1st 2007 our lives were changed forever. Our 15 year old daughter Nicolette (Nikki) was diagnosed with ewings sarcoma. For about 6 months Nikki was complaining of lower back pain off and on. The pain would go away with Motrin and sometimes be gone for a few weeks at a time so the doctor said to stop doing sit ups (she did 100 a day) and not to run on the treadmill and see what happens. Then on Feb.1st she said the pain was so bad she can't sit in the chairs at school. That morning I took her back to the doctor and she sent us for a MRI that day. A few hours later the phone rang with the doctor telling us to pack a bag and get to Children's Memorial Hospital that something was seen on the MRI. Since that day she has had several procedures, scans, MRI, and biopsy. Due to the location in her spine it is inoperable. She has completed 9 rounds of chemotherapy out of 14 all inpatient and she has just finished 31 radiation treatments. She loves shopping, listen to Bob Dylan, and horseback riding. Her older sister is her best friend and as she says her 2 younger sisters are annoying. Nikki is an inspiration to all of us with her strength and her constant negotiations with the doctor to move chemo for a week or two due to what she calls more important things. They gave in this time so she could start her Junior year but it's going to be the last time. As with all these amazing kids life has been a roller coaster this past year in and out of the hospital, low counts, fevers,complications from radiation and the list goes on and so do we! Our kids give us the strength to get out of bed everyday. They have every reason in the world to complain and stay in bed but all they care about is getting to the mall or going to school that's the last thing they want to do is lay around another day. God has given us our special ANGELS to teach us all a lesson. Live everyday to it's fullest and never give in because they sure as heck aren't going to :-)

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.

Also 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 including:
- 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?

Presenters: Julia Scarisbrick, MBChB, FRCP, MD, University Hospital Birmingham; Maarten Vermeer, MD, PhD, Leiden University Medical Centre

Recorded at the 2017 2-Day Patient Conference in New York, NY.

Pierluigi Porcu, MD, Jefferson Health, Sidney Kimmel Cancer Center, Philadelphia, PA, discusses ongoing research in the field of cutaneous T-cell lymphoma (CTCL). Dr Porcu highlights several interesting areas being explored, including genomic research using single-cell analysis, the tumor microenvironment, and studies exploring the potential role of MRD as a strategy to redefine disease stage. This interview took place at the 17th International Conference on Malignant Lymphoma (ICML), held in Lugano, Switzerland.

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