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Thank you Marion!
I would love to get on to the discussion boards more regularly, but we have so much going on over here there never seems to be enough hours in the day!
You are so right – we do need global co-operation on this one. There is often considerable confusion over the treatment paths for cholangiocarcinoma that seem to differ from country to country. However, hope may be on the horizon – last year the The International Liver Cancer Association decided to produce their first ever International Guidelines on liver cancer and have chosen to do this on cholangiocarcinoma.
There will be representation from five countries on the International Expert Panel, including Dr Shahid Khan, one of AMMF’s advisors, and Dr John Bridgewater from the UK.
As far as we are aware, the full panel will be:
Chair: Professor Gregory Gores (USA)
Dr John Bridgewater (UK)
Dr Shahid Khan (UK)
Dr Tushar Patel (US)
Professor Tim Pawlik (US)
Professor Young Nyun Park (Korea)
Professor Josep M Llovet (Spain)
Dr Peter Galle (Germany)Last year, for the first time in 10 years, a completely revised “Guidelines for the Diagnosis and Treatment of CC in the UK” was published (something AMMF was extremely pleased to be involved with) and this is now available to all from our website:
http://www.ammf.org.uk/cholangiocarcinoma/guidelines-for-diagnosis-and-treatment-uk/
I know your discussion boards provide enormous help to many people – we direct many to them ourselves – but we are always ready to help with UK queries whenever and wherever we can.
Helen xx
Hi Jim
Just a quick post to say hallo. I too am in the UK (Devon) and was diagnosed with CC in October 2010. I was lucky enough to be eligible for resection, which was done in my regional specialist centre in Plymouth.I really cannot add anything to what Helen Morement has said about treatment for CC in the UK – I think it can be frustrating at times, and you really do have to fight your own battles sometimes ( or have someone great to fight them for you). AMMF is a wonderful source of information and inspiration for me and many others in our CC family.
I can really associate with your list – it reads much like the one I have carried in my head for the last 2.5 years. Keep working at it…..
Good luck
Helen
Helen…thanks so much for chiming in and sharing the important advice with our UK members. Your input is very much valued and appreciated. Would love to see you do this more often.
Thanks for everything you do, dear Helen. This is not a cancer conquered by any one country rather, it is a disease that requires cooperation globally. And, I believe, dear Helen that we are heading that way.Hugs,
MarionThank you, Marion, PCL1029 and Gavin for pointing Jim in AMMF’s direction.
We are indeed the UK’s only cholangiocarcinoma charity – lots of info on the website, and we will always try to find out answers/info for those who need it …
To underline what has been said for Jim – here in the UK (under the NHS) you are entitled to a second opinion with a named surgeon and/or oncologist of your choice. Treatment should always be under the care of an MDT knowledgeable and experienced in CC, and definitely should be at major hospital rather than locally.
Treatments and drugs used in the UK and the US may differ because, as I understand it, in the US and Canada, clinicians are allowed to prescribe fairly much what they like without an evidence base – something which we aren’t allowed to do in the UK as NICE dictates things on hard evidence…with properly formulated clinical trials – which leaves little room for manoeuvre.
This can be very frustrating for us here, for example in the case of liver transplantation for CC – we see the good results being achieved in the US (albeit with a stringent protocol and small numbers), and many of our consultants and researchers have visited the Mayo to learn about this first hand, and come away convinced by it … Yet it is not available at all to anyone diagnosed with CC.
AMMF’s website doesn’t have discussion boards, but we do have a very active Facebook page which everyone is welcome to become involved with…
http://www.facebook.com/pages/AMMF/347407223911As always, many thanks to the wonderful CCF for all they do – and over on this side of the Atlantic, we’re doing our best too!
With positive thoughts for all.
Helen xx
Ha! Thought that would get you going!
A British classic indeed….. Toad in the Hole!
Hugs,
Gavin
You are most welcome Marion. Shepherd pie is made with lamb mince and a Cottage pie is made with beef mince. I bet that you are glad that Jim didn’t mention changing his toad in the hole recipe!
Hugs,
Gavin
Oh, thanks Gavin. Hmmm…I would go with either lamb or lentils.
Thanks for the explanation.
Hugs,
MarionMarion,
Shepherds pie, made with minced lamb, carrots and stock. Topped with lovely mashed potatoes and baked in the oven, nice!
Replacing the minced lamb with lentils, I’ll take a pass on that and stick with the lamb me thinks!Hugs,
Gavin
Jim, count me in on the Lentil Shepherds Pie – sounds delicious. Gavin, what is in it that you don’t like?
Hugs,
MarionHey Jim,
Welcome and thank you for your post. I especially like your life lessons and totally agree with them.
You will find so much wisdom and support on this site.
-Randi-
Hello Jim and welcome to an amazing site.
I too am in the UK although I was diagnosed and treated in France. I love your newfound lessons, but please remember to laugh every day, I found it to be a wonderful tonic.
I wish you all the luck in the world and if you ever want a buddy to chat please contact me.
Take good care of you.
Sandie
xHi Jim,
I’m sorry that you’ve had to find the site but there is so much support and advice you have come to,the right place.
I am also in the UK and My 41 yearbold sister was diagnosed very unexpectedly in October. Surgery on December 17th to remove most of her liver was unsuccessful but she is working towards getting chemo. You are so right about being treated in a regional centre. Logistically it can be stressful but in terms of care and specialisms there is no comparison and essential in my book.
Keep in touch,
Best wishes.
Hi Jim,
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 I am glad that you have joined us all here as you have come to the best place out there for support and help, and I know that you will get a ton of both from everyone here. Thanks so much for sharing your story with us all and please, no apologies are needed for the length of your posts!
I too am in the UK, in Dundee in Scotland. I came here after my dad was diagnosed back in 2008 and he was treated with PDT at Ninewells here in Dundee. Like you, he also got the services of a Mac nurse after his diagnosis for filling out the same forms and she was with dad since then. Got to say that she was a great help to dad and us throughout and I hope that your Mac nurse will do the same. I also had the need to phone their helpline a few times to speak with a nurse and that was a great help at the time.
Not too much that I can add to what the others have already said to you but I wanted to welcome you here. As to liver transplants in the UK for CC, unfortunately that treatment is not an option for CC patients at the moment but who knows, maybe and hopefully it will be one day. I think that a trial may be on the cards at some point in the future but not anytime soon I think. But do not give up hope. You sound very positive and have a great attitude and it souds to me like you are up for this fight. Yes a second opinion is an option and the links to Helen’s AMMF site that Percy and Marion have given you will help with much infor re doctors and treatment centres in the UK.
As to lentil Shepherds Pie, think I will take a pass on that and perhaps stick with the real one! My dads specialist said that minced beef was a good thing for him to eat as it was easier for him to digest and break down. The sprouts thought I am certainly up for!
I hope that you keep coming back here and I look forward to hearing more from you. And if you have questions then ask away and we will do our best to help in answering them.
My best wishes to you,
Gavin
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