• Denisepdx's Avatar

    Denisepdx shared an experience

    Procedure or Surgery (Liver transplant): I realize a lot has been left out of our journey. After my last post our daughter had 3+ mostly healthy years. She did try Nexavar/Sorafenib two more times at lower dosages and could not tolerate it, lost all her hair (tolerable), but the rashes and skin issues were not tolerable.
    Eventually her bile ducts no longer worked and she had temporary stent put in, which worked for a couple of months. After that she had tubes placed that collected bile in external bulbs and bags and had very short life spans; they had to be replaced every 3-4 weeks because they’d get gunked up. This went on for about a year and a half. The hardest part was keeping the skin around the tubes intact. The tubes contrastât leaked at the sites they exited her body and we sometimes had to change the dressings every 1/2 hour, other times they might last for 12 hours. We got really good at making the dressings with sanitary pads, cut to size, held in place with Tegaderm.

    Eventually the team and the tumor board decided the benefit out weighed the risk and she was put on the transplant list. After 6 months we got the call and she had a liver transplant. The recovery was bumpy, to put it mildly, she had multiple organ failure post transplant and was on kidney dialysis for about 6 weeks. Eventually the new liver kicked in and her kidneys recovered. She has had 3 transplant anniversaries and is doing remarkably well. Each person’s journey is unique. We never expected such an incredible outcome. I share this now so that people know there can be hope in the midst of slim odds. When diagnosed at 18 we were initially told to take her home and help her to be comfortable as she likely had about 6 months to live. We are so thankful we went to a different hospital, a teaching hospital, which made all the difference.

  • Denisepdx's Avatar

    Denisepdx started following

    Question: Y90

  • Denisepdx's Avatar

    Denisepdx asked a questionLiver Cancer

    Nexavar/Sorafenib? Our daughter's liver cancer has spread to the lungs her oncologist wants her to try taking it again. Looking for feedback

    5 answers
    • po18guy's Avatar
      po18guy

      Most large cancer treatment facilities have "tumor boards" in which they brainstorm treatment strategies amongst their various doctors. If the doctors seek second opinions, it is certainly appropriate for the patient to do so.

      over 8 years ago
    • Denisepdx's Avatar
      Denisepdx

      Thanks for the responses. She is being seen at OHSU in Portland where a tumor board actively reviews her case. Additionally, last year we consulted with physicians at UCLA. In this case she stopped taking the drug after 10 days due to a bad reaction to the drug. My understanding is that there is a trial underway that is looking at whether Sorafenib/Nexavar is beneficial in cases where the patient has had liver resection surgery, but it isn't yet known. Nexavar/Sorafenib has been touted as almost a miracle drug for liver cancer, in part because no other drugs have worked so well at inhibiting tumor growth. Our daughter will have follow up scans in a few weeks and we'll evaluate then.

      over 8 years ago
    • shorsegirl24's Avatar
      shorsegirl24

      My father's oncologist has also praised it as the most effective liver cancer treatment out there. If you can handle the side effects. My father was unable to take it because the side effects were too severe. he started with diarrhea, and it turned into nausea, lack of appetite, eventually hospitalizing him for pain and dehydration. Does your daughter get side effects? If she can handle them, i would say it's worth the shot to to try again! Good luck to all of you! hang in there and God bless you!

      over 8 years ago
  • Denisepdx's Avatar

    Denisepdx started following

    User: WVKevin

  • Denisepdx's Avatar

    Denisepdx shared an experience

    Oh No (Cancer has spread/Metastasized): While it isn't 100% confirmed that the cancer has spread. Doctors have indicated it's a 9 in 10 chance that HCC has metastacized to the lungs. A follow up CT scan revealed one 5mm nodule in the lungs and about two to three 1mm nodules. She will have surgery to remove the 5mm nodule and they will biopsy it to determine if it is indeed hepatoma.
    Her doctors have also initially indicated that if it is hepatoma they may want her to try Nexavar (sorafenib) again at a lower dosage.
    The good news is that her liver looks fantastic, even though 70% was removed her liver has regenerated; the liver resection surgery effectively "reset" the liver.
    And further she's had a wonderful summer with more plans ahead, one being to go on a cancer survivor camp on Maui for surfing and standup paddle boarding with other survivors. All around being able to live the life of a teenager.

  • Denisepdx's Avatar

    Denisepdx shared an experience

    Celebration (Finished treatment): Surgery was a success! They were able to remove all of the cancer. It is likely to come back, but doctors have also told us they can treat or perform another surgery.

    1 Comment