Ammf News

Lord Saatchi’s Cancer Initiative/Updated 21.05.13

'Cancer doctors need freedom to innovate' Lord Maurice Saatchi, whose wife Josephine Hart died from peritoneal cancer in 2011, is calling for the law relating to cancer treatment to be changed. He describes the current law as a 'barrier to progress in curing cancer' and says doctors are deterred from trying new forms of treatment in case they are sued - they often know that standard procedures are not a...

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Facctoids – February 2013

What are Facctoids? During February’s Cholangiocarcinoma Awareness Month there were daily feature posts on AMMF's Facebook page - Guest Post of the Day, Fundraiser Pic of the Day, and ... Facctoids. What are Facctoids?  They're snippets of information on every aspect of cholangiocarcinoma, all the facts and figures, from symptoms and methods of diagnosis to treatments and current areas of research. ...

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Your Inspirational Guest Posts

During February’s Cholangiocarcinoma Awareness Month, we had a fantastic response to our Facebook Guest Post of the Day feature!  And what incredible posts they were - telling of love, courage and support, of so many people lost to this ruthless disease, and of the appalling lack of knowledge there is of CC. Undoubtedly, many tears were shed over these posts - both in the writing and the reading - fro...

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Holby City patient has CC!

On last night's episode of BBC1's Holby City (5th March) a patient was actually diagnosed with cholangiocarcinoma! OK, so the situation was somewhat improbable - the symptoms, path to diagnosis and MDT meeting were no doubt far removed from most people's experiences ... but the words bile duct cancer and cholangiocarcinoma were spoken (albeit just once each!) on national television. Many comments comi...

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Dr Zabron’s Mayo Report

AMMF's Research Fellow, Dr Abigail Zabron, visits the Mayo Clinic, USA Dr Abigail Zabron, the Imperial College London Research Fellow funded by AMMF*, was awarded the Dame Shelia Sherlock travelling fellowship in Hepatology 2012. This enabled her to spend a month at the Mayo Clinic, Minnesota, USA, last autumn. Dr Zabron's hosts were Professor Greg Gores and Dr Lewis Roberts, both clinician-scientists w...

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Transplantation – where are we?

Liver transplantation for CC in the UK - where are we? The Mayo Clinic in the US has for some time shown very positive results with their programme of liver transplantation for cholangiocarcinoma, albeit with very carefully selected patients who are subjected to a stringent pre-transplant treatment protocol. (Five year survivals of over 70% of these patients has now been reported.) In the autumn of 2011...

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“Our CC Family” Launches Today

There is a new section on AMMF's website, Our CC Family ... This is a family photo pinboard for everyone to use.  If your life has been touched by CC in any way - if you’re a patient, carer, friend, family member, supporter, fundraiser – then it’s for you. We want to show that it’s real people who are affected by this disease – and give them a chance to say something about it … (To go to...

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CC Awareness Month 2013 Press Release

At the start of this year's Cholangiocarcinoma Awareness Month, AMMF is circulating a press release drawing attention to the recently published Guidelines for the Diagnosis and Treatment of Cholangiocarcinoma in the UK, Drawn up by a group of leading GI specialists, and developed with the support of AMMF and The British Liver Trust, these guidelines have been comprehensively updated for the first time i...

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NHS Specialised Services Commissioning

Specialised Services Commisioning / Cholangiocarcinoma From 1st April 2013, the NHS Commissioning Board will be responsible for the management of the NHS and will be in charge of specialised services commissioning within the new NHS architecture.  These specialised services, which include the treatment of many rare cancers, have been published in a consultation document on-line – where all materials ca...

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Specialist Viewpoint No 5 – Pathology

Specialist Viewpoint – or cholangiocarcinoma as they see it … Article 5 – Pathology AMMF is running a series of articles from specialists giving their viewpoint on cholangiocarcinoma diagnosis, treatments and research.  The fifth article in this series, covering pathology, falls into the diagnosis category. We are delighted that Rob Goldin, Professor of Liver and GI Pathology, Imperial College L...

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Value Based Pricing – a Position Statement

Value Based Pricing (VBP) was proposed by Government in 2010 as a key way to deliver improved access to medicines. But detail is lacking, even though confidential Department of Health (DH) and The Association of the British Pharmaceutical Industry (ABPI) negotiations have recently commenced. This is a critically important moment with respect to research and drug development in the UK.  It is vital that ...

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AMMF receives a legacy

For the first time, AMMF has been privileged to receive a legacy from a will. AMMF came into contact with Chris and Nicki Jackson in early July 2011 when Chris had just been diagnosed with cholangiocarcinoma – they became AMMF supporters and remained in close touch throughout all Chris's treatments.  Chris was a man with a love of life and for the people in his life and, with Nicki by his side, he ret...

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Querying the CC diagnosis to treatment pathway

Helen Morement from AMMF attended Cancer52’s briefing at the House of Lords on 18 October, where Professor Sir Mike Richards, National Cancer Director at NCAT (1), stated that the diagnosis and treatment path for the rare cancers is now, “GP for referral – general/district hospital for diagnosis – specialists/specialist centre for treatment”. In AMMF’s experience this pathway is often not fol...

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Viewpoint No 4 – Detecting Cholangiocarcinoma

Specialist Viewpoint – or cholangiocarcinoma as they see it … Article 4 – Detecting Cholangiocarcinoma AMMF is running a series of articles from specialists giving their viewpoint on cholangiocarcinoma diagnosis, treatments and research.  The fourth article in this series falls into the research category. Earlier this year we were delighted and encouraged to hear that John Chetwood, a final ye...

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Specialist Viewpoint No 3

Specialist Viewpoint - or cholangiocarcinoma as they see it … Article 3 - the Surgeon's Viewpoint AMMF is running a series of articles from specialists giving their viewpoint on cholangiocarcinoma diagnosis, treatments and research. The third article in this series, from surgeon Professor Brian Davidson has now arrived, and what he has to say is very much to the point. From commenting, "As surgery ...

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Chris Allum’s Memorial Football Match

Chris Allum ran the London Marathon earlier this year for AMMF in memory of his father, Charlie Allum, who died from cholangiocarcinoma in June 2011.   If you have read our marathon report, you will see that Chris has written very movingly of his experience of taking on this event, how he had a photo of himself and his Dad printed on the back of his running vest, and how he kept his Dad close to him throug...

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Radiofrequency Ablation Development

"Endoscopically applied radiofrequency ablation appears to be safe in the treatment of malignant biliary obstruction" Surgeons and engineers at Imperial College London have devised a new device which can deliver radiofrequency ablation (RFA) to cancers within the bile ducts of patients with advanced pancreatic cancer and cholangiocarcinoma. This isn’t a cure, but does keep the bile ducts open longer ...

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Biomarker update from Imperial College

In 2011, AMMF made a grant to Imperial College London to fund the work of Research Fellow, Dr Abigail Zabron, for a year. Abigail has now sent us an update on her work into cholangiocarcinoma biomarkers and on what is happening in the laboratory, and we are delighted to report that we have agreed a further grant to Imperial College to secure her second research year. “Over the past few months we have rec...

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AMMF’s Manchester Visit

Report on AMMF’s Visit to the Paterson Institute for Cancer Research and the Christie Hospital, Manchester,  21 May 2012  by Helen Morement AMMF was invited to tour the laboratories of the Paterson Institute for Cancer Research, and the facilities of the Christie Hospital and to meet with Dr Juan Valle for an update on the research work into treatments for cholangiocarcinoma that is being carried ...

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AMMF & The London Marathon

AMMF is a Silver Bond holder with the Virgin London Marathon, which sounds good, but actually means we have just one guaranteed place every five years! So, each year we need runners who are successful in the ballot to come forward to run and fundraise for AMMF in one of the biggest and most important fundraising events of the year. In 2011, eight of our supporters entered the ballot, but only one was al...

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Sharon and the Dorset Echo

Sharon Solomon is courageously using her personal experience of cholangiocarcinoma to raise awareness in the Dorset area, and to fundraise for AMMF to support research. A fundraising Golf Day, organised by Sharon and held at the Wessex Golf Centre in Weymouth on Saturday, 14th April, was covered by the Dorset Echo. An excellent awareness raising article duly appeared in the press, complete with a photo o...

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CC in the Daily Express

During February, which was AMMF's designated Cholangiocarcinoma Awareness Month, AMMF supporter Malcolm Robinson, who has undergone CC surgery and chemotherapy, and Dr Shahid Khan,  Clinical Senior Lecturer & Consultant Physician at Imperial College London and advisor to AMMF, were both interviewed by Adrian Lee for the Daily Express "Your Health" section.  Today, 17th April, that article appeared...

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Waiting for UK Guidelines

Guidelines for the Diagnosis and Treatment of CC in the UK – An Update (or an update on the update …) For the first time in ten years, the Guidelines for the Diagnosis and Treatment of Cholangiocarcinoma in the UK have been updated by a group of GI specialists*.  These are evidence based Guidelines, and the focus is on currently available medical literature. The intention is that these Guidelines ...

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International CC Guidelines

ILCA Plans International Guidelines on Cholangiocarcinoma There is often considerable confusion over the treatment 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 ...

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CC Meeting Report

NCRI* Hepatobiliary subgroup meeting 1st March and subsequent meeting with Professor John Primrose, 7th March 2012. AMMF has been asked to become a member of the NCRI Hepatobiliary subgroup in order to represent cholangiocarcinoma patients. Amongst those attending the meeting on 1st March were Dr John Bridgewater, Professor John Primrose, Dr Hassan Malik, Dr Harpreet Wasan, Dr Juan Valle, Professor Dan Pal...

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