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Thread: HCC, decompenstated cirrhosis, and hep c

  1. #1
    Newbie New User
    Join Date
    Jul 2017

    HCC, decompenstated cirrhosis, and hep c

    Hi, first time posting. Figured I could use some of yalls experience and support.

    My mom was diagnosed with primary liver cancer in 2012. I already knew she had it, I'm obsessed with medical research and saw some signs. Plus she was an alcoholic for over 30 years and before that an IV drug user.

    She first rcvd chemoembolization which killed the initial two tumors.

    Since this year started though she's gone downhill. She was trying to get the hep c treatment but every time she was about to end her 3 month waiting period something happened.

    First it was the portal hypertension. She had massive bleeding from her esophageal varicies. She almost died but the TIPs procedure saved her.

    Then she got put back on the 3 month waiting period to get her blood pressure and red blood cell count back up. Right at the 3 month mark 4 tumors grew aggressively. There's a massive one on the front lobe, 2 on the left lobe which is already mostly scar tissue from the dead tumors and cirrhosis. And one near her kidney.

    We were hoping for radioembolization but the mapping didn't go well. 50% of the resin balls went to her lungs. The tumors had formed such complicated blood vessel connections that no matter which was he plugged them new ones popped up to go to the lungs.

    Now there's nothing they can do but the nexavar and she's not really keen on taking it. From what I can tell she probably only has about 6 months tops. She takes lactulose for the ammonia and other meds (besides pain meds) to help the other symptoms. She has mets in her bones and lungs.

    Did anyone else go through something similar with a loved one? How long did they live after treatments weren't an option? What was their quality of life like? What can I do to further support her? I spend time with her. Cook for her and take her swimming when she has the energy. I just....im so sad right now. I'm so scared of coming over one day to wake her up and glol be her her meds and she'll be gone.

  2. #2
    Newbie New User
    Join Date
    Feb 2017
    Marie. It sounds like your mom has had more success than most who haven't had a transplant. My husband had Hep C and was treated and supposedly "cured" in 2006. He had used IV drugs a short period and drank a lot in his past. He started feeling tired and achy in 2016. M.D. felt he had arthritis and needed to exercise. In Oct he had an ultrasound due to pain we thought was gallbladder. His MD thought he'd pulled a muscle from lifting a heavy load of lumber. The results were an 11cm HCC tumor inoperable. He started on Nexivar in Dec and was told it would slow but not cure cancer. He passed away May 10. Very few side effects from Nexivar but the cancer itself caused him to lose his appetite. I'm not sure if he passed from the cancer or severe malnutrition quite frankly. He lost 80 pounds in 7 months. I I'm not over the shock of how fast this happened or over the anger his MD wasn't more thorough when he was there for physicals each year. I think your mom should try the Nexivar. She could stop it if side effects.


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