Nivolumab (Opdivo)

The Sorafenib tablets have been withdrawn from my husband because the scans showed continued progression of his terminal diagnosis of HCC.  Despite this his bloods are reasonable and he continues to have quality from his life albeit with a huge dark cloud around us all!!   I know there is only one other avenue we can try and that is Nivolumab which is one of the new types of biological therapies.  Unfortunately although licenced for primary HCC it is not available through the NHS or the Cancer Drugs Fund so our only route is the private route.  I did search on the Macmillan site and could find no threads for anyone having been on this treatment which I find hard to believe. If anyone has experience of the drug or just researched the possibility of using it could you share your thoughts please.  Many thanks.

  • Hi  

    I'm sorry to read that the tablets your husband was taking have been withdrawn.

    Whilst I have no direct experience with Nivolumab I have found this information on this site about it. Also, there are quite a few people in the melanoma group, to which I belong,who have taken or are taking this drug as it is used in the treatment of melanoma. You might like to pop over there and use the search bar to find recent threads.

    Best wishes to both you and your husband


  • Hi Snowey1, 

    I am on a treatment called Pembrolizumab (which is similar to Nivolumab) for metastatic melanoma. 

    I did a bit of looking around after noticing your post to see that there was Trial for liver cancer which is now unfortunately closed. There’s more info for HCC and the trial In this link from ASCO.

    On the Macmillan site there is this discussion in Liver Cancer Group that I found by putting Nivolumab in the search in group space. You could ask a question in that discussion to see if you get more information.

    I don’t know if this will help or if you’ve already seen these. If my experience helps for melanoma please just ask or look at my profile. 

    Best wishes

  • Thank you for taking the time to reply. I had a look at the site you said and it's so good to read other people's experiences of these new drugs. My husband had his first treatment of novolumab last Friday. No real side effects which is good. Thanks and best wishes to you also. 

  • My treatment was on Friday as well by second this time or 19 if you count it from before the break. Wishing you and your hubby lots of luck.

  • Dear Snowey,

    I just hope your husband treatment is going well. I was doing some research about Nivolumab and popes in on your message. My mum’s doctor advised the drug, as the last hope Unfortunately she lives in poland and getting the drug there seems to be a miracle. I live in uk therefore I thought it would be easier to look for it here as this looks more accessible. I have a huge favour to you (if this is not a probleme) but could you please advise how I could find the drug. Are there any charitable organisations that would be willing to help.

    much appreciated 


  • Thank you for your note - I am sorry to hear that your Mum is also having treatment for cancer.  My husband lost his battle with Liver Cancer  and died in  August.  He had only one treatment of Nivolumab so it would be unfair to judge anything.  We were told that it was to be given only as a last ditch effort to prolong life and it may or may not do that.  My husband didn't have any side effects from taking the drug.  The only way we could obtain it was via a private prescription from our NHS consultant and it was administered at home by a private company who sent out specialist nurses to give the drug.  It cost of £3,000 per treatment and I was not aware of any charitable organisations who would be willing to help.  Nivolumab was not on the NICE list and this may or may not effect whether charities choose to support it.  Have you thought about a Just Giving page which some people donate to.  Sorry I can't be of more help but if you need any other help please get in touch.  I wish you and your Mum well and you are obviously doing a brilliant job in helping your Mum. Best Wishes. Pam

  • Hi Pam,

    Thank you for your reply, I really appreciate.

    I’m extremely sorry for your husband. This is a horrible disease. I did contact the producer of the drug, I will try to get it directly from him, as I think this looks like the quickest way. 

    Thank you again and wish you all the best !!!

    Take care