Liver Cancer with tumor on portal vein

123winie Member Posts: 1

My husband was diagnosed March 20, 2013 with inoperable liver cancer with a tumor on his portal vein.  His oncologist placed him on Nexavar starting out with the full 800 mg, but has been reduced since January, 2014 to 600 mg. (2 tablets at night, and 1 in the morning).  The diarrhea was a pretty intensive side effect for him.  My question is, how many long term Nexavar (sorafineb) users are out there?  He was given at most 6 months to live, and he is still going strong at 1 1/2 years.   He actually looks better now than he did, and keeps busy going on small day hikes (no more than a mile) and we have been to three different countries since his illness.  I pray between every CT scan when they check to see if the tumor has continued to be stabilized, with no new growth.  Would love to hear any other comments on Nexavar long term use.  Thanks!  


  • kwmw0921
    kwmw0921 Member Posts: 1
    liver cancer.. portal vein.nexavar

    My husband was diagnosed 10/2014 with liver cancer..HCC..HepC..anemia. He started on nexavar in December 2014 and has lost 50lbs. And doesn't have any appetite. I'm his only caregiver and I work full time. Its so hard to watch. I feel like I'm on a roller coaster. We only heard statistics... 9 months to a year.  He goes for a follow up scan end of March.