Hi my husband was given a terminal diagnosis back in November 2017 from HCC (Primary Liver Cancer). He has been on the "normal" pathway option of Sorafenib and thankfully has very little in the way of side effects. If and when this drug stops working I am under the impression that there is nothing else the NHS can provide. However privately there is a drug called Nivolumab which has had some positive outcomes for HCC patients. Could I have feedback from people who may have been offered this or actually paid for this privately. I need to be ahead of the next set of tests just in case Sorafenib is withdrawn. Many thanks to you all.
Im very sorry to hear of your husbands diagnosis, Mine too is in the same situation. I cant be of any help with reference to the NIVOLUMAB drug, although id like to know more too.
However i just wanted to say that My husband was given Sorafenib for a short while, It Unfortunately didn't help him, The Consultants offered him a clinical drugs trial, Which he has been trialing. There are other trials too, it just depends on suitability, It has to be worth investigation?
I just wanted to let you know that there are other possibilities to try. Sadly for my husband it seems that we may need to try something else and are waiting to see, We remain positive its the only way.
Thanks for replying. It's a hard call for everyone in our situation. Can I ask what the trial is - tablets or infusions. How is it monitored? Is it carried out by the hospital. Sorry to ask but no professionals seem to offer these snipits of information. Best Wishes.
Its a trial, By infusion, my husband has to attend hospital three days a week, its under his NHS consultant but its held in a private clinic.
we do not pay its through the NHS. Its based in london.
It is experimental, first phase. I know that there are other trials as he was assessed for suitability but declined, your body has to be a match.
It has to be worth asking your consultant about clinical trials.
Hope this helps
Thanks - we will see what the consultant tells us next week.
Hi, I was on sarafenib for 5 months. I have inoperable incurable HCC. When the sarafenib stopped holding things at bay I was put on Folfox chemotherapy. Just started the second fortnightly cycle. So it's early days. I will be on Folfox for 12 weeks. Then who knows. If the Folfox isnt working I will be put forward for whatever clinical trial might be available. It would be worth talking about clinical trials with your doctors. It was my local hospital who referred me. I now have my treatment at The Royal Free Hospital in London.
Thank you so much for taking the time to reply. I seem to spend so much time "researching" that I end up completely confused!! I have not heard of Folfox - how do they check if it is working or not - scans/blood tests etc? I hope everything continues well for you. Many thanks again.
As with sarafenib bloods are done each clinic appointment. The check for growth at the end of the 12 weeks will be CT & MRI scans.
PS. My original prognosis when diagnosed last July was, without treatment, less than 12 months. The treatment is not going to cure the bugger. It's all with the aim of control. Keep positive!!
I was on sorefenib but had it stopped earlier this week due Liver function dropping. Child Pugh B7.
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