the tumors are unlikely to be benign. nexavar is a new medication recently approved to fight HCC. It has a lot of potential side affects but recent data shows that it may be effective in slowing tumor growth. It is also called sorafenib. You mighht want to try and contact 1 of my former colleagues who is now in Perth Dr Nick kontorinis who trained here as he might be of some further help. i think your husband should be being seen by a specialist and not by his GP alone..
there are some novel chemotherapeutic agents that can be used. one of these is nexavar. i addition there are other potential treatments such as RFA of the largest lesion as well Yterrium biospheres. he should really be folowed by a multidisciplinary team. even though it appears that liver transplantation does not seem to be an option, rarelt rescetion can. definitely you should be proactive. is he being treated in a liver transplant center?
Thank you for your advice. I will now try to contact Dr Kontorinis. Will keep any developments posted. Thank you again.
Dear Dr Schiano
Thank you for your prompt reply.
No, Jim is not being treated in a liver transplant centre. We live in Brisbane, Australia and he was seen in the gastroenerology outpatients dept of the Princess Alexandra Hospital.. His scans were examined by the team of doctors there, who, we have been told, are the top experts in Brisbane. Follow up "treatment" has been left to our local GP and a nurse from palliative care who rings occassionally. Any further blood tests or scans are initiated by us through our GP.
Jim is 63 and scans also show cirrohsis. Nexavar has never been mentioned - I will find what I can on the net about this, but could you give me the rundown on it? As I said, the opinion from the team at the hospital was it was definitely HCC, there was nothing they could do - "go home and die" was the basic message. We find this very hard to accept - if the tumors are so big and bad, why is he so well? Is it possible that the tumors are benign? (hemangioma)
Maybe we are clutching at straws, but 7 months after the initial diagnosis, he is doing so well, we feel they may have got either the diagnosis. or treatment options wrong.
Please advise. Thank you.