July 9, 2019 at 12:57 pm #98839bglassModerator
Let me add my best wishes to Gavin’s that your beloved son finds good treatment options that work effectively. Please stay in touch with our community. I hope you have found the many patient and caregiver resources on the Cholangiocarcinoma Foundation website.
Take care, regards, MaryJuly 7, 2019 at 6:22 am #98832
I will keep my fingers crossed for you both here and hope to hear good news from you about further treatment options. Please do not give up hope. Keep looking and keep fighting as well.
My best to you both,
GavinJuly 6, 2019 at 2:11 pm #98829TrienekeParticipant
Hello Gavin and Mary,
Thank you very much for the quick responses so far .
We wil read it attentively and yes we will let you and Mary know if further treatment options are possible for our son .
Thanks and Kinds regards ,
Laurens en TrienekeJuly 5, 2019 at 9:45 am #98826
Actually, just double checked ENS link again and it is only this one that is a hyper link that will take you to their website.
Radboud University Nijmegen Medical Centre (Nijmegen)
The other ones for Holland you would need to put into google to get the exact details for them.
GavinJuly 5, 2019 at 9:43 am #98825
First off, welcome to the site. I am sorry that you had to find us all here and I am very sorry to hear about your son and what you are all going through right now. I do hope that we can help in providing some more information that will be of use to you here. Mary has given you an excellent run down on molecular profiling and some options here and there is not much that I can add to that. And like Mary also, I am not a doctor or medical person so can’t give specific medical advice to you.
I have some links for you and hopefully they will be of use here. Mary mentions ENS-CCA and here is their website –
A lot of info on there and they have a section on Holland with some contact details –
University of Maastrich (Maastrich)/University of Aachen (Aachen)
Erasmus MC Hospital (Rotterdam)
Academic Medical Center (Amsterdam)
Radboud University Nijmegen Medical Centre (Nijmegen)
Follow the ENS link above, scroll down the page to the Netherlands section then you can click on the names of the hospitals in Holand and that will take you to the website for more contact info. As they are listed on ENS-CCA I would class them as very qualified to deal with CC patients etc.
If you wish to seek help or info from hospitals in the UK then this list is very good for specialists in CC. They are all very experienced again in dealing with patients specifically with CC.
Here is the link to the European Clinical Trials register –
I did a search for you in that for CC and that link should give you all of the trials for CC in Europe.
This is for CC and imunotherapy –
I could not find anything on the EU database for CC and molecular profiling trials.
Here is the link to SWOG S0809 that Mary mentions as well –
I so hope that some of that will be of use to you and your son Trieneke and that you will be able to get some further treatment options through it. Please do not give up though. There has been much progress made lately and more is happening all the time. Please keep coming back here as well and let us know how things go here. And know as well that we are all here for you and will help as best as we can.
My best wishes to you and your son,
GavinJuly 5, 2019 at 8:31 am #98823bglassModerator
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.
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, MaryJuly 5, 2019 at 1:53 am #98818TrienekeParticipant
Recently ( march 2019) our son ( 48 years ) has been diagnosed with colangiocarcinoma .
In the mean while he has had a operation, the wipple- procedure. During the operation were found metastasis in the lymfenodes around de operation-area.
The surgeon has removed them all succesfully- as far as possible ofcourse .
Unfortunately during the operation were found also atypical cells on the intersection of the pancreas.
Our son has also Primary Sclerosing Cholangitis , that makes it more complex.
Our question is :Is in this case the molecular profiling or immunotherapy a option?
In other words: has our son any chance to survive this cancer?
We hope you can give us a honest advice so that we can help our son. In the Netherlands are these options not yet possible
Laurens en Trieneke Hengst (Holland )July 1, 2019 at 3:20 am #98807
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