Prognostic immunohistochemical biomarkers of chemotherapy efficacy in biliary tr

Hi Trieneke,

Gavin can provide a better response from a European perspective, but here are some initial thoughts.

The science of cancer treatment is evolving rapidly, and many of the new cholangiocarcinoma treatments now in testing are based on molecular profiling.  Generally our patients start with surgery if feasible, and/or chemotherapy but if the molecular profiling has been done, it can open other possible treatments based on any genomic defects that turn up.  This is especially important should the more traditional treatments lose effectiveness over time.  For our cancer, these targeted treatments are most often available through clinical trials because the drugs are new and still in testing.

For this reason, having the molecular profiling is important for our cancer.  You may have seen this information already, but here is a link to the Cholangiocarcinoma Foundation website page on molecular profiling for our cancer.

Patients Portal

Finding good treatment options can be challenging with a rare cancer.  It can sometimes be difficult even to identify doctors with experience with cholangiocarcinoma patients.  Often the patient and family members do a lot of the research to find doctors and treatment options.  There is a community of researchers in the Netherlands for cholangiocarcinoma.  The website of the European Network for the Study of Cholangiocarcinoma (ENS-CCA) may give you some ideas about which hospitals have specialists.

Should the time come when treatment through a clinical trial seems indicated, you can look for clinical trials using the U.S. website clinicaltrials.gov, which is a worldwide register.  For Europe, there is also the clinicaltrialsregister.eu.  There may be a Netherlands register as well.  For cholangiocarcinoma, I would recommend three different searches – “cholangiocarcinoma,” “biliary cancer” and “solid tumor” – as a start to find trials.  The trials information will show trial sites and you can search for trials a feasible travel distance for the patient.  If a trial looks interesting, then there are usually contact persons given whom you can call or write to and ask for additional information.

Immunotherapy is also a newer approach in cancer treatment.  For cholangiocarcinoma, the most success so far (in my layman’s view) has been for patients with mutations called mismatch repair defect (dMMR) or micro-satellite instability – high (MSI-high), but immunotherapy drugs are being tested for patients with other genomic defects and even for patients in a general population.  In the U.S., most immunotherapy treatment for cholangiocarcinoma right now is offered through clinical trials.  The immunotherapy drug pembrolizumab (Keytruda) has been approved by the U.S. Food and Drug Administration for solid tumor patients with the dMMR or MSI-high genomic defects who have failed other treatments.

Going to the specific case of your son, there is always reason for hope.  There is a lot of promise for patients in the new drugs and treatments under development.  Patient experiences vary, and you can read patient stories looking through the discussion board.  In my own case, I am a patient initially diagnosed in 2015, and have been in remission since after treatment with surgery, chemo and radiation.  My particular treatment followed a protocol for patients with high-risk tumors who have had surgery.  This protocol has been used in some cases for patients whose surgery could not remove all of the cancer.  Since I am not a doctor, I cannot give medical opinions but if you wish to raise with your son’s doctor the possible feasibility of this particular protocol, it goes by the name of its clinical trial which is SWOG s0809.  This can be searched on-line.

Please stay in touch and send any questions our way.

Regards, Mary