British Liver Trust
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Sorafenib last chance saloon liver cancer

I have cirrhosis and had liver cancer (a 5.5cm tumour). I had a resection nearly 3 years ago and everything was fine. A scan in jan showed 2 liver cancers of around 3mm and i went for the first stage of a liver transplant assessment. A scan on this assessment found another legion that was into my blood vessels. I went to see the oncologist yday and he said the only treatment is sorafenib. Nothing else they could offer or do(including trails). I am devastated as i have gone from a cure to basically a terminal diagnosis in the space of a few months. Is sorafanib any good??

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Hi Grahm, & I'm not too good with words in situations like this, but I wanted to let you know you are not alone.

The Wikipedia page on Sorafenib has some conflicting studies I don't really understand.

en.wikipedia.org/wiki/Soraf...

I hope someone with actual experience with this therapy will show up to share their experiences with you.

I dearly hope you respond well to treatment.

Godspeed, & Best of Luck

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thanks for the reply

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I was given it in India after cyberknife (costs a fraction there) as even though British I was not eligible for British Healthcare - it worked with a 16% reduction in tumours and AFP down to 450 from 2500 ; became eligible for the NHS after staying over 6 months in the UK - they did not treat me with anything and kept on stalling about what they wanted to do and now whammo I am out of the A bracket of the Child-Pugh score and not treatable with anything and left to die - advise from me take it - do anything just dont sit around

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thanks for the reply, can you not get in touch with your mp to complain about your treatment?

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sorry not meant to take over your post! There is a lot more than that that went on - from being sneakily removed from a trial list etc - My wife is Dutch and I have given up the UK and am on the Dutch Healthcare system - so much better - here they treat you as a person not a number - hope you come right but don't sit and wait it out - the NHS had me on codeine for 6 months!!!! Now my liver is a Xmas tree!

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Hi Njovu

Can you tell me if a British subject can go to the Netherlands to get this treatment or do you have to be Dutch?

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Hi I am not Dutch but my wife is - the UK is still EU so all we did was to register at the local city hall and I joined my wifes Dutch Health Insurance at cost of 100 Euros per month - BUT also they say now that I am too weak for treatment (have just turned 50) and no chance for me! I have sorafenib that I bough in India - they or the UK will not prescribe it to me unless I am in the A group of the Child Pugh score (am out but was in several times in the UK and still they kept me hanging) - now do I risk it myself and take sorafenib (it worked last year and tumours down by 16% and AFP down to 450) - am now 6000 plus on the AFP - am looking at last hope at immunotherapy in Germany but that will cost 8000 euros initially and then 4000 euros per jab

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Hi Njovu, my brother has been given sorafenib but has yet to take it because of feeling sick. He thinks if he was to take it then he will feel even sicker. What was your experience with sorafenib?

Thanks

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I had 12mths of sorafenib after TACE. It held things steady for 12mths but then had growth (liver with mets to lungs). Are you eligible for clinical trial for Pembrolizumab? It's an immunotherapy drug which has shrunk my tumours and held me stable for over 12mths. Don't know whether you have to have had sorafenib first, to fit trial criteria. Push for immunotherapy if you can, good luck

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i asked about immunatherapy but was told the trail had now finished and it isnt licensed in the uk,though in the us it is

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Take the sorafenib and hope it's licensed soon, the issue is these things take too damn long. In another forum I said we needed someone more famous than David Bowie to go public to get liver cancer the awareness and research that others cancers get.

Is ablation or TACE an option?

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no i cant have either tace or rfa. Not only did david bowie die from liver cancer robin gibb of the bee gees and errol brown from hot chocolate did. Heres hoping the sorafenib works.

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I’ve been on Nexavar (sorafenib) since January 2018 on a low dose it’s kept things stable, my last appointment at Birmingham April I was told there are new treatments coming where Nexavar was the only one after Tace ! Not too many side effects apart from hair loss with Nexavar and sore feet

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