High bilirubin

[grahamrc]

my bilirubin has gone up from 70 to 106 2 weeks ago and is now(1 week later) 176 i have hcc and and am now really concerned. I am not on any treatment as they thought it was the treatment that made this go up so stopped it over a month ago and it has sky rocketed. Concerned would be and understatement

[alfredthegreat]

Hi Graham. I feel your worry. I had HCC (2 tumours) and I had 2 sessions of TACE that shrunk my tumours and held them stable for 4 years. I am now four and a half months post transplant and doing well. Has anyone mentioned TACE to you?

[grahamrc in reply to alfredthegreat]

thanks for the reply, i tried to have tace twice but stenosis of the hepatic artery prevented it as no mater how they tried they couldnt get the wire into my live. I had a resection that lasted nearly 3 years, then was put up for transplant assessment. Was refused as the scan shows the cancer had invaded the blood vessel. Tried sorefenib but the cancer doubled in size, then tried regronefanb which sent by bilirubin from 35 to 106.they thought it was due to the drug and were surprised my results never came down after a month off it. It seems it has spiralled out of control. I was due to start a trial but now have ben refused. Last chance saloon im afraid

[alfredthegreat in reply to grahamrc]

you've been through one hell of a time Graham! I was on the TACE2 trial for 3 years that included taking Sonaferib daily ( side affects pretty dire as you will know). After 3 years on that the trial it suddenly ended ( It was said that there was no conclusive proof that Sonaferib made a difference being used alongside TACE) My portal vein was damaged during TACE. From the very beginning I was considered as terminal with no chance of a transplant. Roughly six months after coming off sonaferib I entered liver failure ( I also had cirrhosis). It was at this point that I was offered the chance of going for assessment for a transplant but I was told that because of my age (68 at the time) and the fact that I had had diabetes for over 20 years ( although well controlled). High BP and mild asthma I would only stand a 30% chance of getting a transplant. Well here I am post transplant. So never give up Graham, search all avenues, eat as healthily as you can. When my bilirubin was raised ( can't quote numbers because I didn't ask) I used to frequently drink honey and fresh lemon squeezed in hot water and avoid all fatty foods and it seemed to help me. Hope things soon start to look up for you. All the very best. Alf

[alfredthegreat in reply to grahamrc]

Have you looked into proton beam therapy at all? There is quite a lot of information on the internet about it.Alf

[grahamrc in reply to alfredthegreat]

thanks for that alf. seems you have been on a journey too. I hope all goes well for you. I have just reached 59 and the consultant stated a few weeks ago that there were very few options for me apart from referring me to another hospital(i am under bir). For me it seems they dangle a carrot in front of me(transplant and immunatherapy) only to snatch them away a few weeks later. I wont give up. Thanks for the replies and your kind words. I will ask the consultant about proton beam therapy but feel unless my bilirubin comes down drastically it wont be an option

[alfredthegreat in reply to grahamrc]

I wish you all the best graham. I hope that they come up with something soon. I don't know much about proton therapy apart from I looked up what cancers it could treat and liver and lung were on the list. It's non invasive which is good. Keep posting on the forum and let us know how you go on. All the best freind. Alf