1

(10 replies, posted in Members' Cafe)

Could do with saving on barbers as well sometimes, just cost me a tenner to get my head shaved today!

I too hope that treatment works for uncle Duke and you are so right Aiste, he is a  fighter!

Seems like Lithuania and Scotland have much in common re spring. Usually it is windy and rainy here in spring but this year is different as the sun is out! Although the mornings are still a bit baltic though! Lainy is right as well, as normal! Ha!! You are indeed our first Lithuanian member!

Keep coming back Aiste!

Gavin

2

(9 replies, posted in Introductions!)

Hi Aiste,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad. But I am glad that you have joined in with us all here as you are in the best place for support and help and you will get loads of each from all of us.

Thanks for telling us about your dad. I know that right now your head will be all over the place with everything that is going on and that is so common, but please do not give up hope. It is great that your dad is able to have surgery as for far too many CC patients surgery is not an option after diagnosis. My fingers are crossed for your dad and for the operation to be a success. I can not share any personal experiences with surgery as my dad was not able to have it but I know that many will be along soon to share their experiences with you.

Like your dad's doctor, I too hope for a good outcome to the surgery and please let us know how that goes. Keep coming back here Aiste, you are not alone in this now. We are all here for you and we care.

My best wishes to you and your dad,

Gavin

3

(27 replies, posted in Members' Cafe)

Randi,

Sorry to hear about your dad, my condolences to you. Sorry as well to hear about your husband and the double bypass, but very glad to hear that he is recovering well now. Very tough start to the year for you to say the least Randi and so hoping that the year only gets better from here on in. That's great that work is going so well and brilliant too about you wanting to open a private practice, good on you!! Good luck with the scans Randi and hoping for you that 2015 just gets better and better for you as well!!

Duke,

Would have no problems at all of posting a pic of me in a kilt, just wish I had a pic of me in a kilt to post though! A cuppa may have to do instead, although I know it ain't the same!!

Gavin

Patterns of chromosomal copy-number alterations in intrahepatic cholangiocarcinoma.

http://www.ncbi.nlm.nih.gov/pubmed/25879652

Thanks for that Marion, very interesting.

Abnormal expression of Forkhead Box J2 (FOXJ2) suppresses migration and invasion in extrahepatic cholangiocarcinoma and is associated with prognosis.

http://www.ncbi.nlm.nih.gov/pubmed/25873280

Scientists decipher key steps in cancer development to improve treatment.

http://www.cancerresearchuk.org/about-u … -treatment

Scientists find key to 'turbo-charging' immune system to kill all cancers.

http://www.telegraph.co.uk/news/science … ncers.html

Thanks for that Marion.

10

(5 replies, posted in General Discussion)

Hi Sally,

Great to hear from you again and thanks for the update on your sister. Enjoying more time together and planning that trip sounds like a great idea to me, enjoy it all!! Hope that the news from the next scan is good and please keep us update on things if you can.

My best wishes to you and your sister,

Gavin

11

(4 replies, posted in Members' Cafe)

Hi to you too Randi! Great to see you on here again and hope that all is well with you!

Hope you are starting to thaw out after your winter!! :-)

Gavin

This is great news if it works and pharma companies can be forced to publish the results of current and past trials. Time will tell; if it can be done of course but I guess if it was going to happen then perhaps it could work in Europe if the EU were to legislate for this? Just a thought, but I am guessing that if anyone was going to legislate for something like this then it would be the EU before the USA would. We all know how much the EU like to put things in law!

Thanks for this Marion.

Gavin

http://www.nature.com/news/who-calls-fo … ls-1.17331

You're welcome Marion.

First jejunal artery, an alternative graft for right hepatic artery reconstruction.

http://www.ncbi.nlm.nih.gov/pubmed/25866610

15

(5 replies, posted in Chemotherapy)

Hi Emma,

I wish I could help you with this decision that your mum has to make but my dad never had chemo so I can't really help too much on this issue. He was offered chemo or PDT after his diagnosis, his cc was deemed inoperable so he chose to have quality of life over quantity for the time that he had left and felt that the PDT would be abetter choice for him rather than chemo.

This choice is one that is tough for someone to make and my own thoughts are that the person making the choice should do whatever they feel is right for them. I said that to my dad at the time and told him that I would support him in whatever choice he made, and I did support his decision totally.

Chemo can be stopped at any time should your mum start it then chose to stop, it is totally her decision no matter what she has signed up to. Maybe you could try and speak with the onc on your own if your mum agrees to that so that you can ask all of the questions that you want without your mum being there? Just thinking out loud here.

I know this is such a tough time for you right now Emma, I was where you are now with my dad too so I know what you are going through. Keep coming back here, we are here for you.

Hugs,

Gavin

16

(10 replies, posted in Introductions!)

Hi Judith,

Sorry to hear about this and I know how much your are struggling right now with all of this. Let me just say that that stuff about them allowing Mary home is nonsense, complete nonsense! They can advise that Mary stay in hospital, they can strongly advise the same etc or they can advise about this that and the nest thing, but they can not tell you or Mary that she must do something.

The part about getting social services into your home to check things out to see if Mary would be able to cope with living at home is one thing and that is common, but they will not be able to say she CANNOT come home because of the living arrangements. If adaptions to a home are needed such as railings put in, new beds etc then that will be done if needed, that is commonplace and my mum has had that done to her flat as well.

Did you speak with Prof Valle today about everything and if so what did he say?

A MacMillan nurse will be invaluable to you both and I strongly recommend that you get their services now. Prof Valle or the GP will be able to make that referal for Mary if it has not been done so already.

Please do not think that you are not doing your utmost for Mary already, you most certainly are. Keep coming back and now that we are here for you.

Hugs,

Gavin

Melphalan for Use With the Hepatic Delivery System Treatment in Patients With Unresectable Hepatocellular Carcinoma or Intra Hepatic Cholangiocarcinoma.

https://clinicaltrials.gov/ct2/show/NCT02415036

18

(10 replies, posted in Introductions!)

Thanks for that Judith. Hope that Mary gets home real soon and please keep us updated on how things go with everything.

My best wishes to you both,

Gavin

Hi Donnie,

Great to hear from you! Real glad that you are off to Edinburgh today and hope that you get some good news whilst there. Fingers are crossed for you on this! Sorry to hear about your hospital stay, but that is great that they found the problem and sorted it for you. Hope that these bili numbers keep dropping as well now.

Yes you certainly are fighting this with everything that you have and I'm loving this fighting attitude that you have and the whole not taking no for an answer, good on you! Please let us know how things go today and hoping that the yellow tinge fades away too!

My best to you and Lorraine,

Gavin

20

(10 replies, posted in Members' Cafe)

About time spring sprung I say! Daffs and the tulips out in my mums garden as well and other stuff on the way up too. Mini roses all pruned back and ready for new growth, hopefully!

Hope that all goes well with your treatment Duke, got my fingers crossed for you on this!

Gavin

21

(10 replies, posted in Introductions!)

Hi Judith,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what Mary is going through right now. But I am glad that you have joined us all here as you are so in the best place for support and help and you will get loads of that from all of us here. If we can help in any way we will, just ask and we will do what we can.

As Lainy says, I too am from the UK, Dundee up here in Scotland and we have many members here on the site who are from the UK. My dad was diagnosed back in 2008 here in Dundee and was also treated here as well with PDT.

You are so right what you say about the Christie in Manchester. It is well known throughout the UK, Europe and the USA as well. Can I ask who Mary's oncologist is at the Christie, Is it Prof Juan Valle? If so I would say that Mary is in very good hands indeed with prof Valle. Prof Valle is the Vice Chair of the Medical Board for the Cholangiocarcinoma Foundation and has much experience in dealing with patients with CC.

http://cholangiocarcinoma.org/juan-valle/

I do have a few UK specific links that will be of interest to you and Mary. Have you heard of AMMF in the UK? It is the UK's only specific webiste and charity for CC and it can be found here -

http://www.ammf.org.uk/

You will find a lot of UK specific info there regarding other major treatment centers and treatment options.

http://www.ammf.org.uk/cholangiocarcino … options-2/

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

http://www.ammf.org.uk/cholangiocarcino … t-centres/

Helen who runs AMMF is a gem and I am in touch with her frequently about lots of things CC related. Should you wish me to contact her on your behalf about any other facilites or options in the UK then I would be happy to do so for you.

I hear what you say about treatment under the NHS and all that but there is quite a lot being done now for CC in the UK. I assume that surgery was ruled out seeing as Mary was only offered chemo, did Mary seek a second opinion  on surgery if that was the case?

Should Mary want to seek further options in the USA then I will leave that to some of the USA members to discuss with you as they know far more than me about things on the other side of the pond.

I do hope that you keep coming back here Judith, you are not alone in this now. We are here for you and we care.

My best wishes to you and Mary,

Gavin

Improve discrimination power of serum markers for diagnosis of cholangiocarcinoma using data mining-based approach.

http://www.ncbi.nlm.nih.gov/pubmed/25863112

JIm Cramer has been talking about immunotherapy as the next big thing for cancer treatments and compaines involved in it since last year. Said this year would see much activity amongst the pharma and biotechs and that has certainly been the case.

Medicine is certainly a business as you say Marion, big business indeed.

24

(21 replies, posted in Members' Cafe)

Yep Lainy I remember you telling us that T said you would clean the rocks outside your old place if you  had the chance!!! smile

And happy birthday to your son as well!

The effects of different preoperative biliary drainage methods on complications following pancreaticoduodenectomy.

http://www.ncbi.nlm.nih.gov/pubmed/25860221