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