Husband bile duct cancer/cholangiocarcinoma

Hi, my husband is 30 and was diagnosed with stage 4 bile duct cancer 2.5 years ago. He was on a clinical trial for a while which worked well but stopped working in April this year, since then he’s had abit of chemo but now nothing for the past two months. He’s waiting for Futibatinib which was approved 11/09/24 but still no sign of starting. I wondered if anyone else had begun taking it? It’s so frustrating to know it’s been approved but no idea when he can start it, in the mean time he is in agony and becoming more unwell with jaundice that he has begun experiencing for the first time since he was diagnosed.

  • Hi.  I have literally just been diagnosed with bile duct cancer/cholangiocarcinoma and am not going to have treatment, so I can’t advise you about Futibatinib. I don’t have any friends / family to talk to for support.  I’ve read that bile duct cancer is rare and aggressive. I came to this chat to see if there is anybody here with the same cancer, and if they would like to chat with me. 

  • Hello Blue123

    I'm sorry to hear about your husband's diagnosis and that he's still waiting to start the most recently recommended treatment option. It's understandable that you're both feeling frustrated. 

    Has the specialist said why there is a delay in starting this new treatment? Please do get in touch with the hospital PALS team if you are struggling to get answers. It's part of their role to help resolve concerns or problems when you're using the NHS. 

    I'd also recommend getting in touch with his specialist cancer nurse or whoever has been your point of contact with the team to let them know that he is struggling with pain management. This needs to be addressed so that he can feel more comfortable. 

    If you'd like to talk with one of our nurses for some support and advice you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

    I do hope that you have some answers soon. 

    Best wishes, 
    Jenn
    Cancer Chat moderator