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Thank you, Gavin!!
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:
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.
Thank 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…
As 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 xxJune 2, 2012 at 7:14 pm in reply to: Report from Manchester Visit/Update on Chemo Trials #61697
No problem, Gavin.
We will keep on keeping on until we get those answers!!
My dear Julia
I have been checking FB for updates and have only just come on to the CCF forum and seen from your post the news about Susan.
My heart truly aches for you and for everyone that loves Susan. Everyone here has such wise, kind, and supportive words and I don’t think I have any that would adequately match them … I wish I had, just some special words that would make some sense of all this.
I have in my mind your picture of Susan on her birthday – she looked so beautiful that day, such a little while ago. Susan’s ‘journey’ is now over, the pain, distress and struggle is now gone – but love is not.
Through everything, you have shown Susan so much loving kindness. And love never dies … it forms an unbreakable bond, and you will always have that between you …
Thinking of you
There was an article in the British press very recently about the NanoKnife technology:
So far we are not aware of anyone in the UK undergoing this procedure for CC – however we were recently approached by someone whose 55 yr old mother had just been diagnosed with inoperable CC and her oncologist has agreed to sending her scans and information to Professor Edward Leen who is working on the NanoKnife technology, for his opinion. (Prof Leen is Chair in Radiology (Ultrasound) at the Department of Medicine, Imperial College London).
If we hear of the outcome, we will let you know.
HelenMarch 23, 2012 at 11:43 pm in reply to: Student solution to global health challenge claims grand prize in new #59340
This urinary biomarker research is what was hinted at in one of our “updates from Imperial College London” a little while ago, and is the result of work done in collaboration with Thailand.
Although we have seen John Chetwood’s presentation, because it is yet to be published we cannot put the full details on AMMF’s website, but in the next few days we hope to be able to post a general description of the work and what is planned for the future …
And John’s response on receiving congratulations from AMMF, “Many thanks for your continued support of the CC research at Imperial – such work wouldn’t have been possible without you.” Without our wonderful supporters here in the UK, such help would not be possible.
We’ll keep you posted …
Thanks Marion, Lainy and Gavin!
I think this is very important news for several reasons, not least because the ILCA have considered Cholangiocarcinoma important enough to warrant being the subject of the first of their International Guidelines to Diagnosis and Treatment.
Also, the liaison between the UK and USA on this matter is of particular interest to us in the UK, and will, hopefully, lead to more consensus on the treatments used – the seemingly different approaches can be very worrying to CC patients currently.
And, yes, the level of expertise being brought to the table is certainly impressive. Great to know that the right people are on this job!
AMMF has close links with both Dr Shahid Khan and Dr John Bridgewater here in the UK, so if we can prise any info out of them, we will certainly share it.
Another step along the road …
With love and positive thoughts for our CC family across the world.
Thank you all!
PCL1029 – my pleasure to get some info for you, little though it was!
We’ll just keep on keeping on …
Indeed we can, Marion …
We admire the work of CCF so much – and with the help of all our wonderful supporters both sides of the Atlantic:
Together we will CChallenge Cholangiocarcinoma!
Thank you Marion and Lainy.
We are really pushing the boat out here in the UK during February – and are getting good media coverage across the country, with help from our supporters like Malcolm, who are courageously sharing their CC stories.
AMMF’s FB page is very active during February – as well as all the awareness raising posts, we have a “guest post of the day” – some incredibly moving stories coming up there, plus a “Fundraiser Pic of the Day” …
We have launched a CChallenge for 2012 idea, too – lots of info on our website, so that the push for awareness doesn’t end with February.
With love and positive thoughts for all.
Thank you, Gavin.
Shahid kindly agreed to be interviewed by the Daily Express, too, along with Malcolm Robinson, a CC surgery survivor, who is a staunch AMMF supporter and has done much this month to help with awareness raising (interviewed by the Yorkshire Post, and by BBC Radio Leeds with me …)
The article in the Independent has had 75 ‘likes’ to date, and is at the top of the “Most Read” list where it has been for the last couple of days. There are several comments on it – ranging from the supportive to the ‘barking’, but I guess that when you reach outside of our own world, you will always get people who fail to comprehend the situation …
But it’s great to get the national press interested, and to have someone with impressive credentials like Shahid on board who is willing to step up to the mark every time we ask him!!
We’ll keep on keeping on, Gavin …
The invitation to write a blog for The Independent was a direct result of AMMF’s press release circulated throughout the UK just prior to February’s Awareness Month.
Dr Shahid Khan, who is based at Imperial College London, is one of AMMF’s advisors, and is a true “champion for the cause”.
We are delighted that this year’s awareness campaign has caught the attention of not only local press and radio throughout the UK, but the national press, too. As well as the article in The Independent, there will be another in The Daily Express in March.
Please visit AMMF’s website and Facebook page to see what’s going on in the UK, and we send all our CC family in the US very best wishes with their awareness campaign.
Together we can CChallenge Cholangiocarcinoma!
With love and positive thoughts for all.
Thank you everyone!
I am hoping to go up to Imperial College for a meeting before Christmas, and the urine test is on the top of my list of questions …
I will keep you posted.