My Mother, 66 year old fit and well no significant past medical history diagnosed with Cholangiocarcinoma November 2018.
We have had Gem/Cis chemo with excellent results of tumour reduction and stability. Her tumour remains localised to the liver with a local peritoneal metastasis.
The purpose for my email is due to a challenge we are facing in gaining access to a medication Enasidenib from Celgene.
My Mother has IDH2 mutation and her oncologist wishes to prescribe Enasidenib 100mg daily. We have contacted Celgene and been advised there are no patient named supply programs for this indication. We are willing to purchase this drug but are having a difficult in sourcing this other than from USA at $24k a month supply.
Does anyone have experience in sourcing medications which has been proving at phase 1/2 trial but not licensed for the use in the UK. I am aware this medication is available for AML leukaemia. And if licensed for cholangiocarcinoma in other countries.
Our oncologist is happy to prescribe this medication off license.
Our oncologist is trying to unfortunately other than USA we have not been successful. It has been shown to stabilise disease for 6-12 months so would make a significant difference to us as my mother remains incredibly well with her cholangiocarcinoma no side effects or symptoms at all to date.
Realistically - What are the chances of getting a liver transplant in the UK?
Hepatic Encepalopathy medications (Lactulose and Rifamixin OR L-ornithine and L-aspartate)
Accessing NHS hospital test results
Father dying of liver disease conflicting medical advice 
How often do you check medication expiry dates? 
