gavin

Hi Laurens,

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,

Gavin

Hi Trieneke,

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 –

http://www.enscca.org/

A lot of info on there and they have a section on Holland with some contact details –

THE NETHERLANDS
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.

Specialist Centres

Here is the link to the European Clinical Trials register –

https://www.clinicaltrialsregister.eu/ctr-search/search?query=cholangiocarcinoma

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 –

https://www.clinicaltrialsregister.eu/ctr-search/search?query=cholangiocarcinoma+immunotherapy

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 –

https://ascopubs.org/doi/10.1200/JCO.2014.60.2219

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,

Gavin

Hi Kgroft,

Thanks for letting us all know about this trial and that your husband is on it. I will of course keep my fingers crossed for him and for the best possible outcome for him as well. I assume that his onc is aware of the side effects that your husband is experiencing right now and hopefully he will be able to cope with them.

Thanks loads as well for offering to keep us all updated on his progress, thats great. But please do not feel any pressure or anything to post and stuff as you will have a lot to deal with with all of this.

My best wishes to you both,

Gavin

Thanks for that Mary. And thanks as well for sharing what you did with the results of the abraxane and showing it to your onc. I hope that that will be an option for you and thanks loads for sharing it with everyone. I always say to people that if they see something in the material and studies that I link to here then to print it out and show it to your onc to see what they say. Just as you did!

Yep, like me and most of us I guess we all find a lot of the medical literature tough to understand so people could just jump to the conclusions to get the highlights of the piece. Usually the conclusions are a lot easier to understand for us all.

I think that there were 89 or so abstracts that came out last night from the upcoming ASCO annual meeting for this year and that seems to be more then last year. Actually, it seems to be increasing every year which I would say is a good thing. The more research we get the better!

I put most of them on here like every year but some didn’t seem to be related to CC too much. And I like to put them on the site individually so that if people are searching for say XYZ then it will show up in the search forum function rather than just put a link up to the whole list of them in one go.

But here is the link anyway to all of them if anyone wants to go through them all –

http://abstracts.asco.org/239S/search.php?zoom_query=cholangiocarcinoma&op.x=32&op.y=16

There are a lot of them!  Most of the better CC ones are on the first 6 pages or so.

Thanks Mary!

Gavin

https://jamanetwork.com/journals/jamaoncology/fullarticle/2730634?guestAccessKey=4183b488-87c6-471d-bc39-dd583c3eb673&utm_source=twitter&utm_medium=social_jamaonc&utm_term=2258312580&utm_content=followers-article_engagement-text-tfl&utm_campaign=article_alert&linkId=66293115