Leila
PATIENT CASE
Epithelioid Sarcoma
Winter 2020. Leila is the Founder and CEO of Samasource, Samaschool, and LXMI, enterprises that #givework to low-income people around the world using cutting-edge social enterprise models in AI/machine learning, digital freelancing, and clean skincare, respectively.
In April 2019 Leila was diagnosed with vulvar epithelioid sarcoma, an extremely rare and aggressive cancer. Leila and her medical team are pursuing: Potential Clinical Trials, Experimental Immuno-oncology (IO) Therapies,Vaccines, and Other Options for Epithelioid Sarcoma.
Research analysis will be presented to Leila and her medical team. Leading analysis will be featured in our case results.
This case is intended for researchers and medical professionals with advanced experience. Invited researchers will be added to our slack channel and granted immediate access to all data and resources. Past research participants please use short form application.
Full details for the weekend including agenda, speakers, data, communications etc.
Five mouse models are available to test investigational therapeutics. Please apply for access.
New samples are available for additional DNA and RNA sequencing. Update: We have sent samples to Tempus and Stanford.
Share our social posts!
Summary
Leila is a 37-year-old NYC-based entrepreneur who was diagnosed with vulvar epithelioid sarcoma in April 2019. She underwent two attempted resections and then a radical hemivulvectomy (left) and pelvic lymph node removal, but the tumor kept growing back aggressively. After 6 weeks on the experimental gene therapy drug Tazemetostat, she presented with lung mets in July. The tumors are high-grade and despite shrinking with two rounds of chemo (doxorubicin/ifosfamide) it spread to a lymph node on her right clavicle in early August. After switching to two rounds of gemcitabine/docetaxel, she developed pneumonitis and bone mets in her ribs and spine, so she is currently on steroids for the inflammation and a new chemotherapy (liposomal doxorubicin) and will soon undergo targeted radiation on the clavicle lymph node which is pressing painfully on the nerves of her jugular vein. In January her docs plan to put her on Opdivo/Yervoy + Votrient combination therapy after a break from the steroids. We don’t have much time based on how quickly this is moving and how chemo-resistant it seems to be. We are looking for the best IO/vaccine/experimental options to pursue which can be developed within the next 6 months, the sooner the better. We are exploring vaccines, CRISPR-edited T-cell therapy, HDAC targeting/valproic acid, a GSK-3β inhibitor, other chemo combos, and other IO combos. Leila’s Cancer was sequenced by Memorial Sloan Kettering (MSK) and a German company called Cegat and her primary oncologist is Dr. Mrinal Gounder at MSK.
