As I write and introduce myself for the first time, my heart aches for each and every member and their families whom have been diagnosed with Cholangiocarcinoma.
My incredible strong mother was diagnosed with Intrahepatic Cholangiocarcinoma in May 2012. Our hearts have been broken since then and the tears for me flow silently each and every day since that dreaded day in May. My mother however, who is the “rock” in our family has continued to smile each day and has given my family the strength to continue to fight this cancer. My mother is 60 years young and has only ever been in hospital three times in her life and this was to have her three daughters of which I am the eldest with two younger sisters. Recently my mum and dad celebrated 40 years of marriage and my folks welcomed in their fourth grand-child and first grand-daughter into the family.
My mum’s only symptoms before her diagnoses were a three/four day change in her urine and jaundice once she was admitted into hospital. Initially we and the Dr’s were hoping that it was gallstone related but once an MRI was completed our worst nightmare had begun. After a biopsy and further testing we were told that a resection of the liver was not an option and the cancer had spread to three lymph nodes outside the liver. At this stage all other organs are healthy with no signs of any tumours. A metal stent was place in mum’s bile duct and she was told to go home and commence chemotherapy.
Mum’s chemotherapy treatment plan is Gemcitabine (Gemzar) and Platinum for a few hour/s each week for three weeks of each month. After the first three months of chemotherapy mum will have a MRI scan to see if the treatment is working or at least holding the tumours.
As time of each day is precious to us now, I have been searching the internet (which can be very overwhelming and depressing I must say) for Clinical Trials and as there seems to be none in Australia at present. Has anyone had any luck with any Clinic Trials in any part of the world with Intrahepatic Cholangiocarcinoma. If so I would love to take this to the Oncologist and or email the hospital conducting the trials directly and see if a miracle could be waiting for my family.