After thinking about this for so long and hoping I'd never have to make this update, my dad unfortunately lost his battle with this awful disease a week ago today.
At last update, dad was scheduled to commence the PENAO trial a few months back - however after this had been delayed we were offered a trial for a new FGF inhibitor TAS-120. Genomic sequencing we'd done showed that he had this mutation so it seemed a logical choice.
He'd been on the trial for around 6 weeks when he developed the dreaded itch again on his 67th birthday. Subsequent scans showed that the cancer had grown and next steps were to try and stent the main duct or put in a drain to stabilise his bilirubun levels. After a bout of cholangitis which put him in hospital, we managed to fast track an MRI so we could get the ball rolling, as the doctors said he was fit and well enough to pursue other treatments.
The mri unfortunately showed what we weren't expecting... And that was that the main duct wasn't the issue, but the smaller little ducts in the biliary tree and been infiltrated with tiny satellite lesions stopping the flow into the main duct. There was nothing they could do.
His oncologist gave us weeks to short months - and dad left us on the 5th week.
I take solace in knowing dad was in no pain and didn't suffer much at all until his final day. And that he remained at home this whole time, passing surrounded by his family, mother and sister. He even woke up to look at us all one more time before going which I'll never forget. On his final day, he still had his mischievous humour and grin and managed to watch one more AFL game with us.
Our hearts are broken and I know life will never be the same. But I also know he'll always be with us....
Thank you to all on this site, who have been such a valuable support over our 3 year journey.