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 I need to be ahead of the next set of tests just in case Sorafenib is withdrawn.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.
Hi Stewart my husband was on Sorafanib and had it stopped as the HCC had not stopped by the percentage necessary in irdervto continue with treatment. For us the NHS could offer palliative care. However Novolumab has been licenced for HCC so we went down that road via a private prescription from the NHS consultant. Lloyds Pharmacy Healthcare deliver the drug and oncology nurses give the infusion.
You need to ask direct questions and if necessary bring someone in who can ask the difficult questions for you. It's strange but we asked about my husband's prognosis right at the start and now that he is a lot worse it's harder to ask those questions. Knowing gives you back control and from my experience not knowing is worse.
Your post was a month ago so how are things now?
Sorefenib stopped as liver function no longer met criteria.
Told liver will fail before HCC terminal.
given months rather than years
Quote consultant " 3 months, but I hope it might be a bit more. Is that o.k."
Passed for palliative care.
Apart from ascites & Oedema, responding to treatment, feel ok.
Wil look into Novolumab
Hi Stewart - things are a little more clear for you now at least. My husband was given nearly the exact same prognosis back in November. We have had 9 months of relative wellness whereby he could continue doing what he enjoyed with work and making some lasting memories and being able to try and put paperwork into order (a luxury some people don't get). In the last 2 weeks after having Acities drained (not sure of relevance of this but maybe a coincidence) he has deteriorated and now is so fatigued he is struggling to open his eyes and talk. I cannot help but think this is the beginning of the end but remain hopeful that the Acities drainage has put his whole body out of kilter so to speak as Sodium and Potassium levels are both out of range.
Wishing you well Stewart and remain positive.
As said before, treatment stopped due to blood results/liver functions. Albumin had dropped to 25g/L when normal is 35-50.
Started low but had dropped due to Sorifenib. Hadn't Improved when taken off it!
Blood test last week arranged by surgery recorded new Albumin level of 37g/L.
Now getting back to hospital asking if they will be reviewing my situation.
They won't get rid of me that easily.
Hi Thirty7, wow that’s amazing! What’s your secret for your improved albumin level? My husbands been through a similar situation to you. Good luck with the hospital and let us know how you get on
Referred my results back to the hospital yesterday. Got an email offering me an appointment today.
New blood test.
Albumin weighed in at 30, better than the previous 25 but not meeting Child Pugh Criteria of 35. (The 37 would have been good)
So not back on sorenefib. Not sure of effectivitness anyway.
However doc now talking of clinical trials so back to see her next week.
It ain't over till the fat lady sings.
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