gavin

See it is already there!

Hi Wendy,

I’ve done some digging around and been in contact with Helen for you. As to the WNT that you read about in the news in Scotland last week, trials for that , yes it is being used on other cancers but not CC right now. The media sometimes make it seem that things are happening right now and the next step is indeed a trial with it but as to when that start I have no idea but it will not be very soon. I wish that it was but there is still work to do before trials can be started. Helen is very close to the team up in Scotland as here charity part funded the research. If I hear of a start date for that treatment trial I will of course let you know as soon as I can.

As to targeted thaerapies, they are not done here in the UK yet but trials are being planned for this and Hopefully this will come. But again, I do not know when this will happen. Helen confirmed that the thinking is that this is the way forward here with CC but it is not happening yet.

Here are a few links re trials.

The UK – http://www.cancerresearchuk.org/about-cancer/trials/search-results/?AdvancedSearchFormType=research_and_trials_adv_search_form&cancertype=157%23159%23Bile%20duct%20and%20gallbladder%20%28biliary%20tree%29%20cancer&stillrecruiting=Open

USA and worldwide – http://cholangiocarcinoma.org/professionals/research/clinical-trials/

I wish that there was more going on in the UK trial wise right now but I know more will be coming in time, but like everyone I wish it would be quicker. Genome testing is not that common here in the UK yet but I think a few people from here have tried it but thinking out loud I think biopsy samples have to be sent abroad to be tested I think.

Kevin is from the UK as well and there is some info on it that may be of use and interest to you.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13064

Have you searched mainland Europe for more trial or genome testing options? I don’t have much info on that myself and hopefully others can chime in with that if they have anything to add.

I wish I had more to offer Wendy but I will let you know more when I can. Helen let me know that the The Christie have an office that deals with patients from Europe and I will let you know when I hear more about that.

Hugs,

Gavin

Hi Wendy,

Great to hear from you again but sorry that the news that you have to share is not as we would all have liked to hear. But yes, this is definitely the place to come to share everything that has happened to you so far.

I will help if I can with all things from the UK if this is where you want to come to seek further opinions etc. Is it more chemo of a different type that you are looking for? If so then I would travel to Manchester in the North West of England to see Prof Juan Valle at the Christie in Manchester. He is very much experienced in dealing with patients with CC and has seen quite a few members here on the site. He is also much published and is co chair on our Medical Advisory Board here at the Foundation.

I am pretty sure that he would be able to see patients from outside the UK but I am looking into this and will get back to you with more when I hear more. Hopefully that will not take too long.

Have you heard of AMMF in the UK? That is Helen’s site and she has a ton of purely UK specific info with links to specialist facilities here in the UK. This info can be found here –

http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/

Stay strong Wendy and I will be back in touch with you as quick as I can.

Hugs,

Gavin

Great news Marion, thanks for letting us all know! Hope that this years ASCO will be a good one again!!

Thanks for that Marion. I take it this is a new webinar? I will go post links to it on FB and Twitter so the folks over there can watch it as well. Thanks for this.

Hugs,

Gavin

GRRRRRR! It worked for me after I posted it as I checked it after posting it here on the thread, but as you say Duke it is not working now. Basically it was just a search here on the site for ascites and it threw up every post for ascites.

GRRR to bad links, and ascites too.

Gavin

Hi Kevin,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum, but glad that you have joined us here as you have come to the best place for support and help. It does not surprise me to hear you say that you had to struggle to get SIRT in the UK as it is has not long been approved by NICE as a treatment option for ICC. I know that there are not many hospitals in the UK that can even do this here. I am in Scotland and I understand that SIRT up here will be limited to a few hundred patients at most. Very frustrating to say the least!

You are asking all of the right questions as to your mums treatment and please do not be afraid to ruffle any feathers! Keep asking these questions and as you say, it is no good asking when it is too late.

I have a few questions. Can I ask where your mum was diagnosed in the UK and has she thought about seeking a further opinion on everything? Yes it is good to be pushy as you say as sometimes you will not get something without pushing for it. How does your mum feel about further possible treatments and looking to explore things further?

Keep coming back here Kevin, we are here for you.

My best wishes to you and your mum,

Gavin

I guess that no other website in the world can talk of Hypoxia Inducible Factor Expression in Intrahepatic Cholangiocarcinoma and kilts on the same thread.

Always knew we were special!