Hello,
I was recently diagnosed with Hepatic Epitheloid Hemangioendothelioma. Since there was no evidence of metastases anywhere else in the body, the best course of treatment was to undergo a liver transplant. I undewent Liver transplant a month ago. During the transplant, the surgeons found some lymph nodes that seemed infected and wer sent for biopsy. The frozen section biopsy revealed no evidence of tumor in the lymph nodes and the transplant went forward. A detailed biopsy however revealed that one of the lymph nodes was infected with tumor cells. While we are hoping that this lymph node was an isolated node that was infected and has now been removed from the body, we are not sure if that is the case. Recent PET and CT scan have come clean. The doctors are now debating if there is any other form of treatment required as a preventive measure or should we just monitor closely and hope that tumor limiting growth properties of one of the anti rejection medicine (Rapamune) will be sufficient. One of the drugs that has been proposed by oncologists is Sorafenib (Nexavar). There is however, little data to show how sorafenin interacts with Rapamune and how effective it is on Epitheloid Hemangioendothelioma.
Does anyone have any suggestions or knowledge of this rare situation? Any advice on this would be helpful.
Thanks.