Immunotherapy

[Njovu]

The NHS says they can do nothing for me as am now a B8 on the Child-Pugh score 9 (was in the A group several times but was told to wait for the right treatment - now too late) - I have HCC from hemochromotosis and not doing well - have been given 6 months to live so one can understand what I am going through - a person we met is having treatment done at an immuno therapy clinic in Germany immune-therapy.net/en/index... and is having good results - it costs a fortune ; has anybody heard of this place?

[DeniB]

Dendritic vaccines are a really exciting development. I imagine it's quite expensive as it's a personalised vaccine? I'm on Pembrolizumab in a clinical trial, it's frustrating knowing this isn't yet available for other liver patients as a treatment option. Haven't heard of this clinic. There's a fb group "Cancer Immunotherapy background info and treatment opportunities" may be worth asking there?

[DeniB in reply to DeniB]

Have you looked into whether you can access Pembrolizumab anywhere?

[Njovu in reply to DeniB]

Thank you so much for your reply - I will look into it ; how is P administered ? tablet form? if so then sure I can get for fraction of price in India like I did with sorafenib ; I was also supposed to go on a clinical trial and passed all the requirement then before starting I was mysteriously removed from the list - some real funny stuff going on with the NHS... whilst waiting (and told no meds) I was Group A Child Pugh score now am a B and the NHS won't help me - I am British by decent but had to wait 6 months being "resident" in the UK before they would look at me (more time lost) - now its too late - could of also gone on a transplant list back then - my grandfather would turn in his grave if he saw how I was treated - meanwhile so called EU citizens from other countries not even tied to the UK get help before me!! - sorry for the rant!

[DeniB in reply to Njovu]

Pembrolizumab is a half hour infusion every 3 weeks. Works for some completely, not at all in others, but partial response in 60% of patients. May be connected to diverse gut health but they really don't know.

[Njovu in reply to DeniB]

Thanks again - what do you mean by adverse gut health? I have tremendous bloating / gas issues - I just don't want to eat anymore - I need to find out but nobody really seems concerned!!

[DeniB in reply to Njovu]

Diverse- really good gut bacteria. Can be improved with good probiotics and fermented foods. I take Dr Mercola probiotics, Symprove, kimchi, cottage cheese, juice carrots and ginger everyday. It's very trendy at the moment but there is good science behind it.