Hilar cholangiocarcinoma with peritoneal metastases

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    I  have just signed up to the forum and this is my first post. My story so far:

    I was diagnosed with hilar cholangiocarcinoma with peritoneal metastases in Jan 2020, with a prognosis of 3 to 6 months. I became jaundiced very quickly but stenting was not possible. I was put on a course of GemCis chemotherapy and showed a strong positive result to the first four cycles. My liver function returned to near normal and my CT scan showed a significant reduction in both the primary tumour and metastases. I completed my eighth cycle of chemo in July and anticipated a positive scan result. However, although the original tumours had responded well  to treatment, the scan unexpectedly showed some new lesions in my lungs. I was offered FolFox as second line chemo but started to become jaundiced again before chemo could start. As my liver function deteriorated, FolFox was no longer an option. To add to the problem, a new CT scan showed another new mass around my cervix which is also impacting on my bowel. With my options running out, finally I had two stents inserted last week. The reduction in the size of the original primary tumour now made this possible. The aim is to get the liver function back up to normal so that second line chemo with FolFox may become an option again, if I choose it. I am now waiting to see whether the liver function improves and, if it does, I will need to weigh up the pros and cons of  having second line chemo.

    I would appreciate hearing from anyone who has experience of second line chemotherapy using FolFox. I have been told that its efficacy is only 1 in 10. Has anyone else had limited success with GemCis but a good response with FolFox as a second line chemo?






    Dear Jools

    Welcome to AMMF’s forum and thank you for sharing your story.

    You may like to join the Cholangiocarcinoma Support (UK & Europe) group where you could also ask this question– just follow the link and then click the Join Group button.


    Best regards


    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

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