1

(4 replies, posted in Introductions!)

Hi Jim,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your wife. But glad that you have joined as you are in the best place for support and help and will get loads of each from us all. And you are so doing the right thing in seeking as much info as you can as the better informed you are the better equipped you will be in making decisions about everything. If we can help then we will and please feel free to ask. We don't have all the answers but will help as best as we can.

Love your wife's attitude about removing the monster! I so hope that that will be the case! Keep coming back here Jim, we are here for you and we care.

My best wishes to you and your wife,

Gavin

2

(11 replies, posted in Introductions!)

Hi Sammie,

Thanks for the update on your dad and sorry to hear about the infection in his toe, grrrr to that. Glad to hear that you will speak with your dad about a second opinion and I hope that goes well. I k
now that the culture we have over here is not the same as it is in the US about getting further opinions on things but I do feel that it should be done. Sometimes we should all be more proactive I feel in the UK about stuff like that, especially when it comes to CC and the rarer diseases like Marion says.

Please let us know how things go and how your dad feels about this. We are here for you.

Hugs to you too,

Gavin

3

(5 replies, posted in General Discussion)

Hi Tabytha,

What a great report, love it!! Well chuffed for you!! Indeed you should enjoy life and I hope that you enjoyed the mexican meal and the margherita! Sounds good to me! Indeed you do have options and I hope that your next report is as good as this one, or even better! My fingers are crossed for that and I hope to hear more good news from you.

My best to you,

Gavin

4

(6 replies, posted in Members' Cafe)

Great news Lainy, congrats!!! smile

5

(40 replies, posted in Clinical Trials)

HI wmil,

Welcome to the site. Sorry that you had to find us here but glad that you have joined in as you are so in the best place for support and help and you will get loads of each from all of us. Please feel free to tell us more if you want about what is happening with you, we are all here for you. But if you don't want to share more with us then that is fine as well!

You are so right that stories like Melinda's do give  everyone hope and I so hope that they will start a trial like this in Europe. I am from Scotland by the way, just a hop over the North Sea from you. Like your name as well! I so hope that you will find a treatment that works for you, what are/have you had treatment wise?

If we can help then please just ask and we will do our best. And if you want to introduce your self then please feel free to do so on the Introductions part of the site and I know that you will get many more responses over there. Keep coming back and I look forward to hearing from you more. Moontje is from Holland too and I am sure that she will reply to you as well.

My best wishes to you,

Gavin

6

(40 replies, posted in Clinical Trials)

Hi Melinda,

What brilliant news, thanks for sharing that!!! Remember what they say about slow and steady, slow and steady wins the race!! So yep, I like that! And telling your research scientist to hurry up, I like that too!!

Looking forward to hearing more about your shrinkage and loads of positive thoughts are heading your way.

Hugs,

Gavin

Love it Duke!!! Your humour and story, not the snow though!

Thanks for that Marion. I'll put a link on the FB page as well.

Study of Orally Administered AG-221 in Subjects With Advanced Solid Tumors, Including Glioma, and With Angioimmunoblastic T-cell Lymphoma, With an IDH2 Mutation

http://clinicaltrials.gov/ct2/show/NCT02273739

10

(12 replies, posted in General Discussion)

Hi Erin,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your MIL. But glad that you have joined in with us all as you are in the best place for support and help and you will get loads of both from everyone here. Glad as well that you have been reading as the better informed you are the better equipped you will be in helping with your MIL. If you have questions then please just ask and we'll do wwhat we can to help.

I would have thought that your MIL's doctor who placed the plastic stent scheduled a follow up meeting in Feb as plastic stents can last around 3 months or so before clogging can be an issue so that is my guess as to why a meeting was set for Feb. I agree with Marion and Lainy in that contacting the doc soon is a very good idea to discuss this stent issue.

You are not being naive at all in what you say here so please do not think that! When a stent starts to work as it should the patient will feel much better. My dad had a metal stent inserted and once his started to work after his diagnosis he felt so much better. I hope that things are just taking time here for the stent to wrok for your MIL as that can be the case. But if things do not improve then I would get in touch with the doctor about this.

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

My best wishes to you and your MIL,

Gavin

My thanks to you Barbara and Rob as well. What a great effort and it sounds like a great night was had by all! Looking forward to seeing the pictures from the next event!!

Thanks for everything!

Hugs,

Gavin

12

(9 replies, posted in Members' Cafe)

Love it Lainy! Hope you all had a great dinner last night, and I am sure that T was there looking down on you all!

Atypical debut of symptoms of cholangiocarcinoma.

http://www.ncbi.nlm.nih.gov/pubmed/25347340

EZH2 elevates the proliferation of human cholangiocarcinoma cells through the downregulation of RUNX3.

http://www.ncbi.nlm.nih.gov/pubmed/25280519

Type II diabetes mellitus is associated with a reduced risk of cholangiocarcinoma in patients with biliary tract diseases

http://onlinelibrary.wiley.com/doi/10.1 … 2/abstract

Thanks for sharing that with us all Genevieve, I love hearing news like that!! I hope that the Xeloda works well for your husband and also that they will be able to do something to fix the hernia issues. Please keep us updated on everything.

My best to you both,

Gavin

And for this as well Karen!

Thanks for this Karen.

FTY720 inhibits proliferation and epithelial-mesenchymal transition in cholangiocarcinoma by inactivating STAT3 signaling.

http://www.ncbi.nlm.nih.gov/pubmed/25344679

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

http://link.springer.com/article/10.100 … 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!

Hugs,

Gavin

22

(8 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,

Gavin

23

(11 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 -

http://www.christie.nhs.uk/about-the-ch … valle.aspx

Juan also is vice chair of our medical advisory board - http://cholangiocarcinoma.org/juan-valle/

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 -  http://www.ammf.org.uk/cholangiocarcino … 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,

Gavin

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,

Gavin

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

http://www.ncbi.nlm.nih.gov/pubmed/25340585