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    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

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    • 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.

      almost 4 years ago
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      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.

      almost 4 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!

      almost 4 years ago
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    User: WVKevin

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    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.

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    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.

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    Denisepdx shared an experience

    Procedure or Surgery (Partial liver removal): Our daughter had 70% of her liver removed and the doctors are optimistic. A week after the surgery she had a CT scan that revealed they were able to remove all of the tumors and one that was treated with RF ablation during surgery is completely zapped. There were two drains (chest and incision cite) placed post surgery and after these drains were removed another drain had to be placed into the abdominal cavity to remove fluid (doctors have told us, 'this is not uncommon'). All in all her doctors indicated that the surgery went better than they had expected. After 11 days in the hospital she should be coming home today!

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    Denisepdx shared an experience

    Decision Point: Not really our decision, because we were waiting on the decision of her surgeon and the liver tumor board at OHSU. Following another CT scan on 4/30/12, the multidiscplinary liver tumor board met on 5/1/12 to discuss our daughter's case and reached consensus to go forward with liver resection surgery of the right lobe and one segment on the left (in total segments 4, 5, 6, 7, an 8 will be removed). Surgery is scheduled for Monday, May 7th.

    Last summer this was not an option as the tumors were too numerous and too large. After surgery segments 1, 2 and 3 of her left lobe will remain or about 35% of her liver. Her liver will then regenerate after the sugery. We are excited and anxious.