Two years ago, my son was diagnosed with the rare vascular sarcoma epithelioid hemangioendothelioma, on which there is incredibly little reseach and knowledge (see here for more on this rare cancer). PubMed revealed a “characteristic” description: unpredictable behavior, no correlation with cytology, and no standard treatment. Visits to the best sarcoma specialists only confirmed the total lack of understanding of epithelioid hemangioendothelioma.
While searching for data, I came across the support group HEARD—a collection of more then 250 epithelioid hemangioendothelioma stories gathered by its founder Cynthia Pollak during her struggle to save her son (heardsupport.org). Cynthia realized that information is the key to treatment. She showed me the way.
I found a few patients with epithelioid hemangioendothelioma on rare cancer chats, and we started talking about the creation of an online epithelioid hemangioendothelioma hub. I remember bursting into a wild jig when 20 patients joined our Facebook group; it seemed to be so many!
At the time of this letter, we now have more then 500 members and are growing every day. Besides fundraising, sharing experiences, and directing patients to the right specialists, our group is collecting information on anything that can help clinicians and researchers overturn the “black hole” status of this cancer.
And our efforts are paying off. Just recently, after a few patients reported good responses to mTOR inhibitors, we launched a thorough “investigation”; we found all reported responders on the Internet and among our members and identified clinicians using mTOR inhibitors on epithelioid hemangioendothelioma and reached out to them. We organized a phone conference—attended by leading sarcoma specialists treating epithelioid hemangioendothelioma—and presented the data. As a result, there is now consideration of a clinical trial. The wheel of hope has started to spin! ■
Queens, New York