My Mum, 49yo in Australia

Hi guys, I’ve been reading on these forums the last couple of weeks but finally decided to join and post about my mother.

Last month, August 2015, a general check up at her GP found some mildly elevated LFT’s, so an ultrasound was ordered. After an ultrasound, she had an immediate CT scan which discovered an approximate 9cm mass located within the liver. Otherwise she was completely asymptomatic. She had an MRI and then was referred to a HPB surgeon, and then had a biopsy on a nearby lymph node approx 2.5cm, which returned negative for cancer. CT on lungs showed lungs were clear. The surgeon ordered a biopsy of the liver, and then were referred to an oncologist. He explained that although there is no portal vein invasion, it is currently inoperable to the the closeness to a vein (I can’t recall which one), however his aim is to shrink the tumor and then go for a liver resection. He seems confident he can do this provided the tumor shrinkage. At this stage we did not even know what type of cancer she had (so we assumed it was just liver cancer).

Once we saw the oncologist (early Sep 2015), we were told the diagnosis was cholangiocarcinoma. He wasn’t very positive when we saw him, stated it was pretty advanced (although clear lungs, no mets, negative lymph node biopsy), however he said theres some abnormal looking lymph node(s) nearby. He decided because she is young, fit and healthy to start her on FOLFIRINOX (oxaliplatin, irinotecan, folinic acid and 5FU). I’m not sure why he decided on this over gem/cis, which seems to be the first line treatment. I have not been able to personally ask him this. She had a port insertion in the clavicle area, and receives treatment every 14 days. She is currently on day 2 of the second cycle and is handling it quite well, minimal side effects including occasional diarrhoea, some pins and needles on the first 3 days of cycle. The oncologist explained that there’s a 50% chance she will respond to the chemotherapy – so we are trying to stay positive.

I’m very grateful because she has amazing family around her at this difficult time. I’m also very proud of her for the way she has handled it, through the ups and downs, the tears and the strength and courage she has had, and how positive she is remaining now that she has started the chemo. Up until starting the chemo she was very scared and emotional, but know she feels she is soldiering through it. I feel bad for my dad, him and my mum have been together since they were 16 years old, and he lost his mother to brain cancer at 15 years old. My boyfriends father was diagnosed with oesophageal cancer one year ago, and although he has had successful treatment and surgery and is currently cancer free, I don’t think even that prepared me for my own mother’s diagnosis. I work in the healthcare field (pharmacist), so I’m very grateful to have a greater understanding of many aspects of the cancer journey, particularly in regards to medications and medical terminology.

I would love to hear from anyone in Australia who is going through a similar journey. Also, anyone who has had experience with FOLFIRINOX in cholangiocarcinoma. We are hopeful that if folfironix fails, we might be able to access a trial medication or possibly have access to some funds for a medication like Pembrolizumab, however we would look into tumor profiling before going down this avenue.

Thanks again for reading, and nice to meet you all!