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Any people with Epithelioid Hemangioendothelioma

PostPosted: Sun Jul 15, 2012 9:03 am
by KellyinLondon
My partner Kathleen had just been diagnosed with Epithelioid Hemangioendothelioma. I am looking for anyone who has received treatment (surgery, transplant, and all medications) for diffuse nodules on the lungs as well as lesions in the liver. We are particularly keen to assess whether the treatment options in the UK and USA differ and the response rates to different treatments.

We are thinking of going to the Cleveland Clinic to seek help. Does anyone have any experience of them - I suspect it will be their Sarcoma unit?

many thanks for any help

Re: Any people with Epithelioid Hemangioendothelioma

PostPosted: Thu Mar 28, 2013 8:32 pm
by themitzfam
Hi Kelly,

I do not know much about Cleveland Clinic's sarcoma unit, but sarcoma units are definitely what you want to be looking for. So far, we've had good experiences with both Sloan-Kettering and Dana-Farber (New York and Boston, respectively).

Let me know if you'd like to chat further. I hope your partner is doing as well as possible.