Hello everyone , I'm so glad that I found this site it has helped me a lot reading what you have been through .
my dad was diagnosed with intrahepatic cholangiocarcinoma in august 2014, he is 53 he had scans after weight loss that made the doctor suspicious, then a liver biopsy of the mass .
he was not a candidate for surgery because the largest tumour size was in his left lobe of around 16 cms ( 6 inches ), and involvement of all other lobes of the liver with smaller lesions , his performance status was excellent so he was started on gemzar/cisplatin in his local hospital in saudi arabia which is the biggest and leading one in the middle east , king faisal specialist hospital and research centre , he received 6 cycles.
he had I would say remarkable improvement his weight started to come back to base line his ca 19-9 back to almost normal figures as well as .
his scans showed regression of that lesion to 6 cm from 16 cm (2.3 inches from 6.2)
he still had the smaller lesions in other lobes of liver and still wasn't a resection candidate .
he wanted to be treated beside his family although I have prepared for him to be seen in experienced big centres like mayoclinic but his wish was that if they didn't have anything significant to offer then I'd rather stay home, which was the case based on their replies ( mayoclinic, memorial sloan catering)
I also looked the option of liver transplant which he wasn't a candidate because his tumour size is large and that it is intrahepatic and also involvement of local lymph nodes and compression on liver vessels .
after 4 months of chemo he had radiological progression and started on second line xeloda(capecitabine) and oxaliplatin , how ever it progressed regardless and exploded in like 2 months where it has not only come back to previous size but even worse and mets to the lungs .
he had received 5 cycles of his second line and the oncology team stopped it and decided for no further chemo .
he was clinically jaundiced and after ERCP and placement of plastic stent better and bilirubin started to come down .
he has an appointment scheduled in Cleveland clinic , how ever it is a long flight and I couldn't speak to anyone there to have like a preliminary plan and I don't want him going there in this condition without any benefit , like getting into a trial or something .
I also discussed with doctors local therapies to the tumour like TACE and RFA .. how ever they said it would do more harm than good at this stage .
I feel so sad and also think always like did they give up easy or is this the nature of this cancer .so what do you guys think ? any similar experience .
thank you guys so much again, this helps a lot
the medical oncologist : dr Ali aljubran
surgeon dr Tarik Amin