Comparative Effectiveness of Pyruvate Kinase M2 in Bile, Serum Carbohydrate Antigen 19-9, and Biliary Brushings in Diagnosing Malignant Biliary Strictures. … 014-3397-7

Hi Karen,

Thanks for that, very interesting. And my thanks to you and Heidi as well for attending the conference and representing the Foundation as well. I am sure that the booth is looking great!

I so agree with the 2 points that you raise re pain and getting to grips with it as soon as possible if that becomes an issue. I know from my dads experience that they started him early with this and did an excellent job throughout of keeping on top of it.

My thanks once again to you and Heidi for doing this, great work!




(5 replies, posted in Introductions!)

Hi Laura,

Welcome to the site. Sorry that you had to find us here but glad that you have joined as you are so in the best place for everything to do with CC and we are here for you. Thanks for sharing what has been going for you and I am very glad that you were able to have surgery as so many people are not able to do so. I so hope that your recovery improves as you say that it has been tough so far. And please let us know how that goes and what the onc says as well to chemo and all of that.

I know you will have lots of questions, we all do! Please feel free to ask and we will do what we can to help in answering them. We don't have all the answers but we'll do our best for you!

Glad that you have de-lurked, I always like it when people de-lurk and join in with us all, we don't bite! Keep coming back and please know that we are here for you and we care.

My best wishes to you,



(6 replies, posted in Introductions!)

Hi Sammie,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. But I am very glad that you have joined in with us all as you are in the right place for support and help and you will get loads of each from everyone here. Having been where you are with your dad right now 5 years ago myself with my dad I so know how you are feeling and what you are going through at the moment. I know it was a big step for you to register and join us all and I am glad that you did.

I too am from the UK, in Dundee up here in Scotland and my dad was diagnosed and treated up here with PDT. Can I ask where your dad was diagnosed and where is being given his chemo and by whom? Sorry for the questions but the more info we have the better we can help.

Has your dad sought a second opinion for his CC and how would he feel about that? If not, I highly recommend he seek and opinion from Juan Valle at the Christie in Manchester. He is so very very experienced in treating patients with CC and your dad would be in very good hands with him. He has helped a few of our members and they only have such good things to say about him.

Here is a few links for you about Prof Valle and he can be found through this link - … valle.aspx

Juan also is vice chair of our medical advisory board -

Another great link that is totally UK specific is AMMF and you will also find lots of info re hospitals and treatment centres in the UK - … t-centres/

I know that you are anxious about getting the latest ct results for your dad, that is so very common and we all go through that. Please do not give up hope though! I know it can be tough sometimes but please stay strong as your dad and your kids as well will need you to be strong.

You have reached out for help and we are here for you, you are not alone in this anymore. If you have questions just ask and we will do what we can to help. Helen who runs AMMF is a gem and should you wish me to I will contact her on your behalf if you like. I know that under the NHS system your dad is entitled to a second opinion from someone of his choice and I am sure that your dads current onc or gp would be able to refer your dad to Prof Valle and I am sure that he would be happy also to see your dad.

Please keep coming back Sammie and keep us updated on everything. We care.

My best to you and your dad,


Hi Brenda,

This is such good news indeed! Thanks so much for sharing with us all!! News does not get better than this! I hope that the good news continues to roll for you both and how great as well to hear that Kenny is out and working on the farm! Hope that the harvest was good as well and please keep letting us know how everything goes.

My best wishes to you and Kenny,


Clonorchis sinensis Infestation Promotes Three-Dimensional Aggregation and Invasion of Cholangiocarcinoma Cells

Long-term survival following extended hepatectomy with concomitant resection of all major hepatic veins for intrahepatic cholangiocarcinoma: report of a case. … 014-1038-6

LOL! Seems like your Packers are in CTRL and my Bears are on the -    lol!

Always for my Bears Lainy!!! And always the optimist as you know, but 3-4 hmmmm or grrrrrrrrr...... Both actually! Ha! As usual I got my bet on before the season started at 33/1 to win outright.

All we have to do now is win 9 straight and that will get things back on track!! smile

I never saw that picture that you talk of, but no doubt you and Darla will be happy with how things are going for your Packers at the moment.

Hope dinner was good the other night!

The significance of genetics for cholangiocarcinoma development.


(5 replies, posted in Chemotherapy)

I know what you mean Moontje. Trying to stay calm during all of this is not easy I know, but I think you will be able to make better decisons and deal with everything if you can stay calm. Again hard I know sometimes considering everything that you are dealing with right now.

Hugs back to you,


For those using chrome, after you ctrl + as I did it brings up a magnifying glass on the right hand side of the address bar that seems to stay there. Just click on that to change the size if you want to go back to the original size. Or you can do what Duke says as well.

Ctrl + seems to make everyones pics in their avatar bigger too!  smile

Good call on the ctrl and + Marion! The zoom of 10% makes a huge difference to the text on the boards!

Thanks! smile



No personal experiences to share with you on this but a few links that should be of interest to you. … tecan.aspx … irinotecan … irinotecan … EedHfnF-bE

Hope some of these are of use to you.

My best to you both,


Thanks for the reminder Marion. 45 minutes until it starts and you can still register for it here - … l-therapy/

Hi Michelle,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what you are going through. But real glad that you have joined in with us all as you are certainly in the best place for support and help and you will get loads of each from everyone here.  Like Lainy says, information is vital and the better informed you are the better equipped you will be when it comes to making decisions about everything. Have you sought out a second or thrid opinion about possible treatment options?

Please keep coming back and let us know how everything goes. You are not alone in this, we are here for you and we care.

My best wishes to you,


Just emailed you but I'll join you once again in doing your yippee dance here as well!!!! Brilliant news!!!!

Time for you to go out and do some real dancing then!!

Love ya,



(57 replies, posted in Members' Cafe)

Beautiful. Sums up what Percy did , the man that he was and the impact that he had on everyone affected by cc worldwide perfectly. Thanks for posting this Marion and also to Stella and Barbara for representing everyone at Percy's memorial service. Miss him loads and he will never ever be forgotten. So proud to call him my friend and so wished that I had the chance to meet him and go to that Bears game together.




(5 replies, posted in Chemotherapy)

Hi Moontje,

I agree with what Duke says here, please do not panic! Try and stay strong and remember what has got you both through these 7 years. As you both know, yes this is a rollercoaster and you have been through a ton of up's and down's so far. Do not panic and try not to think the worst either as that won't help right now.

I hope that you get some good news from the upcoming scan results and please let us know what they say and also what Tom's medical team recommend. Loads of positive thoughts are coming over the North Sea to you and Tom.



Biotherapeutics – a new funding scheme for research … -research/

Gene–environment interaction involved in cholangiocarcinoma in the Thai population: polymorphisms of DNA repair genes, smoking and use of alcohol.


(2 replies, posted in Members' Cafe)

Yep, thanks Rick! Wasn't able to log on here over the weekend either, go Rick!! :-)

Hi Malcolm,

Great to see you on here again and what great news, 5 years, yay!!! Love it!!

Sounds like you had a great trip to the USA and I am sure that Helen will be delighted to see you with your AMMF wristband on outside the White House! And everything seems full on with your life at the moment and that is so good to hear! Busy busy time for you!

Hope to see you over here again and here's to the next 5 years!

My best wishes to you and your family,


Outcomes of stereotactic body radiotherapy for unresectable primary or recurrent cholangiocarcinoma.

Salvage Radiation Therapy for Isolated Local Recurrence of Extrahepatic Cholangiocarcinoma After Radical Surgery: A Retrospective Study.