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Cholangiocarcinoma

Carel
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Hi, hoping to receive further advice. A family member was diagnosed with stage 4 cholangiocarcinoma (spread to liver and several lymph nodes). Surgery was not an option, informed it was palliative but could have chemotherapy and immunotherapy.  She is now onto cycle 6 but missed a few sessions within the cycles due to side effects (? TIA as well as low magnesium/hb/WBC etc). Chemo was GemCis initially but Cisplatin stopped due to ?TIA. At recent appointment, informed scan showed improvement within lymph nodes and to continue with chemo for another 2 cycles. Following this, immunotherapy can continue for up to 2 years. My query is (didn't have the opportunity to ask at app) what happens when chemo ends... is it likely that lymph nodes will worsen again, is it likely that overall cancer will worsen/spread again? I'm concerned re: prognosis. Please advise if possible.  Many thanks

  • Hi Carel,

    Welcome to the online community. My name is Penelope and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I am sorry to hear about your family member's diagnosis of cholangiocarcinoma and side effects from treatment. It is natural to be concerned about prognosis and what might happen when the chemotherapy ends.

    As we do not have access to any NHS medical records, however, we would suggest having a follow up conversation with your relative’s doctor or specialist nurse. This would need to be with your relative’s consent. It is very common to have further questions after a consultation and if your family member has the contact number of a specialist nurse or clinical nurse specialist (CNS) then they may be able to help. Some people like to ask how often they will have scans during immunotherapy treatment. Another question might be if there are any other treatment options if cancer does show signs of progression during immunotherapy.

    Some side effects of chemotherapy can be cumulative. That is, they can get worse over time the longer the chemotherapy is given for. This is why a limited number of cycles may be given even when a response has been seen. Treatment with chemotherapy is a delicate balance between the beneficial effects and the risk of side effects or reducing quality of life. Whilst there may also be side effects from immunotherapy, in many cases these can be managed, and immunotherapy can often continue for a longer period of time.

    Managing the uncertainty of a serious illness can be very difficult. This information from Every Mind Matters - how to deal with change and uncertainty may be helpful. The cancer wellbeing charity Penny Brohn also have lots of resources online that may be beneficial to you or your relative.  Penny Brohn support people to live as well as they can with cancer and to give them a sense of control over their health and wellbeing.

    I hope this information is helpful. If you would like to talk things through further then please do get in touch with us on the Macmillan Support Line and choose the option to speak to a nurse. We are available every day from 8am to 8pm on 0808 808 00 00.

    Best wishes

    Penelope, Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref/ UH

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