Haemophellia, cereosis of the liver, Cancer of the liver, transplant help please

[Rookyard007]

Hi all, I posted a couple of weeks ago about my father in law. He's a haemophelliac who was contaminated with hep c back in the 80's, part of the Taintedblood scandal. 12 years ago he had interferon treatment which did get rid of the hep c, but due to the haemophellia and treatment he was left with cereosis of the liver. He was diagnosed a couple of weeks ago with cancer of the liver; but we have just been told that this is contained to the liver

[Tatjana]

Hi, I just read what you just wrote about your father-in-law. Did you have a question or did you post without finishing because I think I may be able to communicate on your post.

[Rookyard007 in reply to Tatjana]

Hi, thank you for getting in touch, I am really looking for any advice or support that is fact based good or bad and people's personal similar disceases would help us prepare for what's ahead with eyes wide open.hope that helps

[ancientadolescent]

I had a liver transplant 2 years ago and the difference in me has been amazing. Before I was falling over every other day or so and could not regain myself to stand up again. In addition I could sleep for 18 hours a day and hardly ever spoke to my family and friends who were very supportive. Now after my transplant I am an active member of society again and have taken two technical studies of on-line education passing both with scores of around 90%. There is hope for your father in law and wish your family the very best of good fortune.

[Rookyard007 in reply to ancientadolescent]

Thank you so much for a wonderful and encouraging response

[grace111 in reply to ancientadolescent]

thats great news im happy for you and this gives hope to others. long may your good health continue. ❤️

[Bolly]

I had liver cancer due to cirrhosis and viral hepatitis but was ok to have surgery to remove the tumour. This was 4 1/2 years ago. I think its the haemophilia that will be the reason your FIL wont be able to have the same treatment as me, but maybe there are other options to discuss with his specialist?

[Rookyard007 in reply to Bolly]

Thanks for your reply. I'm glad to hear they are 4 1/2 years later from your illness. Surgery to remove the tumours aren't an option, it's transplant or extend as long as they can so we're praying that he passes with flying colours when he is in addenbrooks for the stress testing. Would you be ok to tell me if you had either radiotherapy or chemotherapy and how you found that? Thank you for

Your help.

[Bolly in reply to Rookyard007]

I didnt have chemo or radiotherapy as the tumour was small enough not to need shrinking with radiotherapy or embolisation, and as it was encapsulated it came out in one go with no evidence of spread so no chemo. I was 'lucky'. I think your best option for your FIL is to explore life extension options, i suspect transplant would be way to dangerous due to his haemophilia. Its a massive operation, the liver is a very 'bloody' organ and due to the shortage of donors there is a tendency to look toward a recipient who is likely to have a good outcome with at least 15-17 years of renewed life expectancy after the tp.

[Tatjana]

I had primary liver cancer. It started with having a baby in 1971. Lost 14 pints blood. They did not test the blood in those days. Found out in 1991 I had Hepatitis C. I also went on drugs trial about 15? years ago. My genome is 1A so it did not work. Found out at end 2012 I had Primary Liver Cancer - Hepatic Cellular Carcinoma. Had liver resection Jan 2013, no Chemotherapy. After operation and history came back I was told I had some rare C - (Non-Hogkinson) EMZL - Extranodal Marginal Zone Lymphoma. I was warned that if the op failed or the C returned failed I could have transplant only for the next nine months because of my age. I go back for CT scans etc. You say it is contained within the liver - I think it depends where and if it is in an ok place like mine, why doesnt your father-in-law enquire about a resection. I too had various options but chose the op. I hope that any of the above is helpful.

[Rookyard007 in reply to Tatjana]

Hi, thank you so much for feeling able to share your story with me. Are you UK based? If so are you in touch with Sue threakall and the Taintedblood campaign? He has been told that there are only the two options, treatment to extend which would give him possibly a year or transplant; transplant is the complete last resort option due to the haemophellia which would give him an extra c5 years which with his conditions is a miracle in itself. The tumours are spread apart in the liver and they aren't starting any treatment until after his assessment as this will only weaken his body more, so we are focusing on that at the moment, I will pass your message on as any option is a chance so thank you so much for your help.

[johnb1959 in reply to Rookyard007]

Hi, i was diagnosed with fatty liver appros 6 months ago, plus primary liver cancer, the cancer effected both lobes of the liver one side had a large tumour which excluded me from consideration for a transplant, and the second lobe has multiple tumours however they are smaller, my specialist said my cancer was uncurable but treatable, any operation to cut out the tumours was dismissed due to the size of the larger tumour and cerosis caused from the fatty liver, so i have been undegoing chemotherapy called TACE [ Plenty of info on the net about it] i have now had TACE three times, the first time in the lobe with the large tumour, the second on the second lobe with multiple tumour and the third on the large tumour again, infact i only left hospital two days ago after the last TACE, now i wait for four weeks to see how the chemo reactes with the tumours, after four weeks i will have an MRI then after a further two weeks when the doctors have had a chance to see the results i will be given the verdict, it should be made clear everyones body may react differently to chemo, hence Doctors wont be to specific about it, as it was explained to me if the chemo works as expected my life expectancy could be increased to approximatly 1 to 2 years, if the tumours then start to grow or others appear i can repeat the TACE again, quite simply as long as your liver can take the TACE they can repeat it, you may see some figures suggesting a max of 5 taces are allowed, but that was pooh poohed by my specialist, hope the information proves usful to you, I'm 55 by the way and at present feel as fit as a fiddle , feel free to ask any questions if you wish

John

[Bolly]

Good to see you posting johnb and to find you feeling fit as a fiddle. I remember your scary story when you first posted on here.