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Thread: Nivolumab (opdivo) for liver cancer

  1. #1
    Newbie New User
    Join Date
    May 2016

    Nivolumab (opdivo) for liver cancer

    I have recently started the phase 3 trial drug opdivo for my hepato cellular carcinoma diagnosis. I had my first scan which showed that the tumors are a little larger but I have no new ones. The doctor said that he has found that this drug can sometimes make the tumors swell first before they shrink. Unfortunately the doctors can't tell the difference so I need to wait and see . Wondering if anyone else had the same reaction to this drug.
    Thanks in advance

  2. #2
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    Hello, paige. Welcome to the forum, though I'm sorry it has to be under the circumstances of a cancer diagnosis and treatment. You're a bit of a trailblazer, being treated with an immunotherapy drug like Opdivo. While I don't have any specific experience with it, it has been approved by the FDA for exactly your diagnosis (among other indications).

    Opdivo is designed to trigger your body's own immune system to attack cancer cells. I would go with your doctor's experience on this when they claim that a tumor can initially swell. I can only speculation that perhaps this is caused by inflammation--which is often a side effect of a working immune system. I understand this medicine is given every two weeks--how many treatments have you received to date? Do you also receive a scan of some kind after every treatment? Are you experiencing any other side effects?

    I'm very interested to hear how your treatments progress, if you don't mind sharing. This is an exciting new drug that should offer much hope to cancer patients. I hope and pray the best for you as well.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  3. #3
    My husband has been dealing with HCC Liver Cancer for three years. He has had TACE, Y90, Cyberknife & Ablation. New cancer cells have developed and his Oncologist wants him to begin Opdivo because, she feels, he has had too many treatments that, although successful, have damaged the liver. The side effects of Opdivo scare both of us very, very much. I am looking for more info from patients with HCC who have been treated with Opdivo ... the success and failure stories, opinions of this treatment, side effects, etc. We want to make a well informed decision as far as whether or not to proceed with this treatment. What we have researched thus far is very, very scary. Your opinions matter ... please help us decide if you have any experiences to share. Thank you.

  4. #4
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Please note the original poster has not returned to the forum since originally creating this thread well over a year ago. Unlikely a response will be posted.

    Closing thread to avoid confusion.


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