1

(2 replies, posted in Websites)

Thank you, Gavin!!

Dear Percy

It would probably be best if you email Prof Vale with your info and see what his comment is ...

If you would like to do this, let me have your email address and I'll give you his contact details.

Helen xx

3

(10 replies, posted in Members' Cafe)

Dear Friends

On this 4th of July we send best wishes to all our CC Family in the USA (and wherever they may be in the world!).  Have a wonderful day!

From everyone at AMMF here in the UK. xx



AMMF - the UK's only cholangiocarcinoma charity
http://www.ammf.org.uk

Dear Percy

I don't get on these discussion boards as much as I would like, but I know something of your 'journey' through Gavin, and also know you are always very quick and generous with your helpful advice for others ...

You are such a 'warrior for the cause' (to quote Lainy's wonderful expression!), so I was truly sad to see that you are having to face such tough obstacles yet again.  It speaks volumes about your character to read that you made yourself stay awake during your chemoembolization procedure so you would know what was involved.  Astounding ...

From the posts here, it is obvious that you have many, many powerful positive thoughts coming your way - please know that they are coming to you from here in the UK, too!

I admire your incredible attitude, Percy.  May your God keep you safe ...

Helen xx

(From AMMF, the UK Cholangiocarcinoma Charity)

5

(9 replies, posted in Good News / What's Working)

Wonderful news, Helen!

Let me know if you're happy to share with everyone on AMMF's FB page - it would be so good to let them have some positive news!

Helen
AMMF

www.ammf.org.uk

http://www.facebook.com/pages/AMMF/347407223911

6

(18 replies, posted in Introductions!)

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/cholangiocarcino … atment-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

7

(18 replies, posted in Introductions!)

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...
http://www.facebook.com/pages/AMMF/347407223911

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 xx

www.ammf.org.uk

8

(3 replies, posted in Members' Cafe)

All of us at AMMF in the UK send best wishes for a very happy Thanksgiving to all our CC Family in the USA.

Click the link to see our animated greeting card for you all:

http://www.jacquielawson.com/viewcard.a … urce=jl999


Helen xx

www.ammf.org.uk

AMMF - the UK's only cholangiocarcinoma charity

9

(9 replies, posted in Members' Cafe)

On this 4th of July, we send best wishes to all our CC Family in the USA
from all of us at AMMF in the UK!! xx

(Please click the link to see our ecard - hope you enjoy it!)



http://www.jacquielawson.com/viewcard.a … urce=jl999

No problem, Gavin.

We will keep on keeping on until we get those answers!!

Helen  xx

It's Royal Jubilee Weekend here in the UK, and AMMF would like to take this opportunity to send love and best wishes from the UK to all our CC family around the world!

Helen xx

www.ammf.org.uk
AMMF - The UK's only Cholangiocarcinoma Charity

Hi Everyone

AMMF recently had a very informative tour of the Paterson Institute for Cancer Research and the new chemo trial patient facilities at The Christie Hospital, Manchester UK.  This was followed by a great meeting with Dr Juan Valle, who updated us on the current situation with the ABC chemotherapy trials, what is planned for the future, and added in a few interesting thoughts of his own!

To read a report of this visit, please go to:

http://www.ammf.org.uk/2012/05/31/ammfs … ster-visit

With love and positive thoughts for everyone in our CC family.

Helen

www.ammf.org.uk
AMMF - The UK's only Cholangiocarcinoma Charity

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

Helen xx

www.ammf.org.uk

14

(25 replies, posted in New Developments)

There was an article in the British press very recently about the NanoKnife technology:

http://www.dailymail.co.uk/health/artic … -half.html

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.

Kindest regards

Helen

www.ammf.org.uk

15

(4 replies, posted in Members' Cafe)

Dear CC Family

On this Easter Sunday we send greetings and best wishes from the UK to all our CC family across the world!

Easter is a time for hope and renewal - we continue to hope that research will bring us the answers that are so badly needed, and we renew our resolve to do everything possible to support that research ...

With love and positive thoughts for everyone.

Helen xx

www.ammf.org.uk

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 ...

Helen x

www.ammf.org.uk

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.

Helen

www.ammf.org.uk

18

(5 replies, posted in New Developments)

Thank you all!


PCL1029 - my pleasure to get some info for you, little though it was! 


We'll just keep on keeping on ...

Helen x

Here in the UK, there is often considerable confusion over the treatments paths for cholangiocarcinoma that seem to differ from country to country.  It is, therefore, very welcome news that The International Liver Cancer Association are producing 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, and including Dr Shahid Khan, one of AMMF’s advisors, and Dr John Bridgewater, both from the UK.  The full panel will be:

Chair: Professor Gregory Gores (USA)
Dr John Bridgewater (UK)
Dr Shahid Khan (UK)
Dr Tushar Patel (USA)
Professor Tim Pawlik (USA)
Professor Young Nyun Park (Korea)
Professor Josep M Llovet (Spain)
Dr Peter Galle (Germany)

The planned deadline is December 2012.

The international guidelines will not replace the revised UK national CC guidelines (just awaiting final approval and, once published, they will be put on AMMF's website), but are expected to be similar as they will be applying the same evidence base.

Another step forward!

Helen x

www.ammf.org.uk


(ILCA, http://www.ilca-online.org/)

20

(5 replies, posted in New Developments)

AMMF has been asked to join the NCRI* Hepatobiliary subcommittee, to represent CC patients here in the UK. This is really good news and we hope it will enable us to raise further questions and concerns on behalf of our supporters, and to receive answers and current thinking from those at the forefront of work on cholangiocarcinoma. A report on the first meeting attended by AMMF is now on the website ...

http://www.ammf.org.uk/2012/03/12/cc-meeting-report


With love and positive thoughts for all our CC family.

Helen xx


*NCRI (the National Cancer Research Institute) is a UK-wide partnership between the government, charity and industry which promotes co-operation in cancer research among the 22 member organisations for the benefit of patients, the public and the scientific community.

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!

Helen xx

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" ...

http://www.facebook.com/pages/AMMF/347407223911

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.

Helen xx

www.ammf.org.uk

23

(8 replies, posted in Websites)

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 ...

Helen xx

www.ammf.org.uk

24

(8 replies, posted in Websites)

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.

Helen xx

www.ammf.org.uk

25

(15 replies, posted in Members' Cafe)

Thank you Gavin and Lainy - it is absolutely for sharing!

And welcome to The CChallenge ...

http://www.ammf.org.uk/cc-awareness-month

Helen xx