I was diagnosed with extra hepatic bile duct cancer end of September 2025. It was discovered because I had become very jaundiced and scans showed the bile duct was blocked. Initially they were hopeful they could operate and remove the tumour along with 60% of my liver and gall bladder. I had to have a procedure to freeze the section of the liver they were going to remove in order to build up the liver that was going to remain. I also had 2 drains to my liver because the bile couldn’t drain through the bile duct. I had a 6 week wait for surgery during which time I was in and out of hospital because of the drains becoming infected. I was optimistic still that it would be worth it if they could perform surgery to get rid of the cancer.
Unfortunately, a few days before surgery a scan showed that the cancer had spread to my lungs. Surgery was no longer an option. It’s now palliative care. My prognosis is one year with treatment. I have a stent in my bile duct so the drains could be removed.
I am now in the middle of chemo and immunotherapy which is going okay. My last scan showed the lesions on my lungs have shrunk although there’s no change to the bile duct tumour. Due to start cycle 5 tomorrow. Starting to feel a lot of fatigue and my hair is becoming very thin. Also experiencing some swelling and water retention. Would be glad of some advice regarding my hair. My oncologist told me I would not need to use a cold cap but didn’t anticipate this loss of hair! Any tips gratefully appreciated.
I also wanted to ask about pain management. I have been taking slow release Morphine and Buscopan for pain around the bile duct and gall bladder but these along with the chemo cause chronic constipation. Taking Laxido and Dioctyl for the constipation.Any suggestions gratefully received.
Thanks
