My mum’s recurrence

Hi Naeema,

Thank you for posting your mum’s story, but I am so sorry to hear that she has had a recurrence.

When cholangiocarcinoma recurs and has spread outside the liver/bile ducts, the most common treatment is chemotherapy because it is systemic and can fight cancer anywhere it has located.  From what you describe, your mum has already had some chemo treatment, so you may be familiar how different chemos work.  Some patients tolerate chemo without too much problem, and there are chemo regimens (e.g., gemcitabine alone or capecitabine alone) that discussion board members have reported being used with patients not able to tolerate a strong treatment.  So even if you and your mum are hesitant about the idea of chemo, before deciding it might be good to hear what the oncologist thinks might be helpful as treatment.

Some of our patients are being treated with immunotherapies or targeted treatments through clinical trials, as these drugs are new and still being tested.  You can look for clinical trials worldwide in the registry clinicaltrials.gov, or if you are outside of the United States, there may be a registry operated by your local public health service.  In clinicaltrials.gov, each listing for a trial gives information on the trial location, the eligibility criteria, and points of contact you can call to see if the trial is a good fit.  The targeted treatments are used for patients who have specific biomarkers or genomic mutations that can be treated.  While immunotherapies and targeted treatments also come with side effects, for some of them, patients have reported finding the side effects to be less difficult than with chemotherapy.

Here is a link to a message the Cholangiocarcinoma Foundation has developed explaining molecular profiling to look for genomic mutations.  This is a topic that you can raise with your mum’s doctors if of interest.

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I hope your mum’s doctors can offer good treatment ideas that she can consider.  Be sure to push for prompt attention to any pain or other discomforts she may be feeling.  Please send any questions our way, and take a look at the many resources for patients and caregivers on the Cholangiocarcinoma Foundation website.

Take care, regards, Mary