In 2011, eight of our supporters entered the ballot, but only one was allocated a place – Lisa Smith. Desperate times, and for a while it looked like Lisa would be fairly lonely out there – and then three members of the Braintree & District Athletics Club stepped up to the plate, Paul Miller, Lee Gardham and Gavin Allen, and Chris Allum also managed to get a place from his local running club. Team AMMF was in business!

With the months of preparation over, and despite the forecast, 22nd April dawned bright and clear, near perfect conditions. The five members of Team AMMF were toned, honed and ready to run!

Oh Lisa - Ouch !!

All our runners completed the course, Chris’s knees (which he had been worried about) held out, but disaster struck Lisa at mile three when she slipped and fell on a water bottle that someone had carelessly discarded right in front of her. She carried on running through the pain of a badly injured ankle until mile 16, but then was forced to walk to the finish line – she was very disappointed that this added an hour to her target time but we think it was incredible that she managed to carry on and finish!

For each of our runners it was an incredible experience, but Chris Allum had very special reasons for taking part, and for supporting AMMF, as he explains:

Chris: ambition achieved!

“Running the London Marathon has always been a lifelong ambition of mine and since watching the great event on the television when I was a youngster it is something that one day I dreamt of achieving. All my life I have been a keen sportsman, and football has been my main sport. However in the last 5 years I have struggled greatly with injury and in particular tendonitis in both knees. The injuries made me put off entering the Marathon … until in November 2009 my Dad, Charlie Allum, fell ill with cholangiocarcinoma and I really wanted to do something to support both him and a cancer charity (we discovered AMMF early in 2010). I was unsuccessful twice in the public ballot and then, finally, I gained a place through a local running club.

Dad battled cancer bravely and this gave me great strength and determination to complete this challenge as I knew that anything I was suffering was only a fraction compared to what he went through. The support I received from my family, friends and AMMF since starting my challenge has been unbelievable, and this has no more been demonstrated in the level of donations and sponsorship that I have received. I believe that this sums up how well thought of both Dad and our family are.

Chris ran for his Dad, Charlie

Running the marathon has not brought my Dad back, but what it has done is give me a fantastic focus at a time of my life that has been incredibly difficult for me. Now I look back I am extremely proud of my achievement, so would I do the marathon again … maybe not next year as I’m hoping to finally have surgery on my knee, but I certainly wouldn’t rule it out in the future as I have dreams to get under that magical 4 hour mark!”

Let’s keep our fingers crossed for 2014, Chris!

Team AMMF’s official times:

Gavin Allen 02:49:32 and Lee Gardham 03:27:58

Gavin and Lee were 1st and 2nd home for Team AMMF – Gavin’s time means a guaranteed place for the 2013 London Marathon, and he immediately said he will be running it for AMMF!

Paul Miller 04:31:22

Third man home for Team AMMF – was it easier than organising events for the Braintree & District Athletics Club, Paul?

Chris Allum 04:38:52

Chris – quietly pleased to have a achieved his lifetime ambition, and to have honoured his Dad’s memory in doing this …

Lisa Smith 05:36:36

Lisa with her medal – and no one deserved that medal more!

With sponsorship continuing to come in, the total raised by runners is currently just over an amazing £4,000.00.

Well done to Team AMMF’s Fantastic Five – Chris, Gavin, Paul, Lee and Lisa – for taking on this huge commitment, and well and truly doing AMMF proud!

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 of Sharon and her trusty helpers, all sporting the new AMMF t-shirts with the CChallenge 2012 logo!

Many thanks go to Sharon for all she is doing to bring CC to the attention of the wider public, and to support AMMF.

To read the article, click here

Sharon's Golf Day and the Dorset Echo

Today, 17th April, that article appeared in the Daily Express – on pages 34 and 35!  Some inaccuracies – down to journalistic licence, no doubt – but overall a good awareness raising piece in a national paper and, as they say, “All publicity is good publicity!” (??)

To read the article, click here

CC Awareness Raising in the Daily Express 17.04.12

17.04.2012  - Footnote to the above:

AMMF would like to thank Malcolm Robinson for being so open in sharing his experience of CC, and for doing such a sterling job in raising awareness. However, there are several inaccuracies in the article (not made by Malcolm nor Dr Shahid Khan, but doubtless journalistic licence), a couple of which we feel should be addressed. Firstly, “Possible risk factors are our poor diets and the binge-drinking epidemic …”, which gives the impression that CC is or could be somehow ‘self-inflicted’. This would seem to be confusing risk factors for cirrhosis with those for CC – whereas in fact most cholangiocarcinomas are NOT in patients with liver disease. And secondly, “Research is focusing on discovering new ways to burn away the tumours ….”. Neither AMMF nor Dr Shahid Khan (who was also interviewed for this article) have any idea what this is about!

The Institute of Global Health Innovation hosted its first Student Challenge Awards on 21 March and, despite facing incredibly tough competition, John Chetwood, a fifth year medical student at Imperial College was declared the winner for his cholangiocarcinoma research project, “Detecting a Silent Killer”.

John was up against four other entrants, combinations of individual students and teams, who each had to present their innovative research work to the panel of judges.  The panel included Sir Liam Donaldson (former Chief Medical Officer and Chair in Health Policy at the IGHI), Jane Dreaper (BBC health correspondent) and Sarah Brown (wife of former Prime Minister Gordon Brown and Adjunct Professor at the IGHI) who questioned each entrant closely.

John Chetwood presents his CC research to the IGHI panel

John’s project involved researching the use of urinary biomarkers to create a new diagnostic tool for cholangiocarcinoma.  Blood and urine samples were collected in Thailand, which has the world’s highest incidence of CC, largely liver fluke associated.  These samples were then frozen and transported under controlled conditions to Imperial College London, where they were thawed and analysed.  The analyses showed there was a difference in urinary metabolites between Thai CC patients and matched normal populations that point to a urinary biomarker profile for this condition, and potentially for UK CC (although this is as yet unproven in sporadic UK CC).

John and the judging panel

On awarding first prize to John, Sir Liam Donaldson, chair of the judges’ panel said: “… the quality and range of the projects were of a very high standard. It was a difficult decision for us to choose a winner as all the projects offered innovative approaches tackling important global health issues. In the end, two projects stood out due to their potential global health impact, with the winning candidate having the edge.”

John commented: “I’m extremely pleased to win the first Institute of Global Health Innovation student challenge competition. It was very exciting to present my project to such high-profile judges, and such an award validates the emerging role global health is playing in international research. Imperial has one of the largest cohorts with chronic liver disease in the country and is an extremely reputable hepatobiliary research centre – and as such I feel extremely privileged to have the opportunity to work in such an institution and with such distinguished experts.

I’m looking forward to working on developing my project further. One option we have is to create a urine dipstick which can detect the presence of the cancer early and accurately – which could have enormous implications worldwide, but especially to people in South East Asia where liver-fluke associated cancer is more common than appendicitis. Such a cheap and easy method has the potential to save many lives.”

Because John’s work has not yet been published, we cannot to link to his presentation – once the data is published we will do so.  However, the money John was awarded (£2,000) will be used to collect more samples from the hill tribes in Khon Kaen Province, Thailand, to continue the pilot data generation, and to validate the potential urinary biomarkers.

The hope is that a urinary test would be available within 5 years, but this needs validation in large cohorts and, therefore, major funding.  In order to take these promising preliminary results further, a multi-million pound grant will be needed.

While we wait for further research to make a urinary test become a diagnostic reality, AMMF sends congratulations to John on his award, and our sincere thanks for this brilliant research.

(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 will be circulated to all specialist doctors and nurses in the field: hepatobiliary medicine/endoscopy/surgery, hepatology/GI physicians and surgeons, and GI cancer specialists.

The Guidelines were submitted to the British Society of Gastroenterology (BSG) mid 2011, and circulated for peer review nationally.  Also, although this document is highly technical and written for very specialised professionals, because the BSG is keen to have some patient input, last September AMMF was asked to review the Guidelines from a layman/patient’s perspective, which we duly did.

We have been waiting to hear the date the Guidelines will be published in the journal Gut so we can put the full document on AMMF’s website – and have just asked for an update on this from Dr Shahid Khan, lead on the Guidelines group.

He replied that the international reviewers to whom the journal Gut sent the manuscript (even though it had already been approved by the British Society of Gastroenterology) have come back with many pages of comments to be answered point by point. A considerable amount of work which, when done, will then be sent back to the journal, who will send back it to the reviewers who will then, hopefully, be satisfied. It will then go back to the journal Gut, who will (again, hopefully) accept the guidelines for publication.  And then it will probably be another few months before it is actually in print!

As Dr Khan commented, “Unfortunately this is the pace of modern medical research!”

*The group: Shahid A. Khan, Brian R. Davidson, Robert Goldin, Nigel Heaton, John Karani, Stephen P. Pereira, William M. C. Rosenberg, Simon D. Taylor-Robinson, Paul Tait, Andrew V. Thillainayagam, Howard C. Thomas, Harpreet Wasan

Hepatology and Gastroenterology Section (S.A. Khan, S.D Taylor-Robinson, A. Thillainayagam, H.C. Thomas), Department of Medicine and Department of Histopathology (R. Goldin), Imperial College London, St Mary’s Hospital Campus, South Wharf Road, London W2 1NY, United Kingdom; Department of Oncology (H. Wasan), Imperial College London Hammersmith Hospital Campus, Du Cane Road, London W12 OHS; Department of Hepatobiliary Surgery (B.R. Davidson) and University College London Centre for Hepatology (S.P. Pereira, W.M.C. Rosenberg), Division of Medicine, University College London, Royal Free and University College Medical School, Pond Street, London, London, NW3 2QG; Department of  Hepatobiliary and Pancreatic Surgery (N. Heaton, P. Karani), King’s College Hospital, Denmark Hill, London, SE5 9RS.

(info posted 19.03.12)

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 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.

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)

The planned deadline is December 2012.

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

(International Liver Cancer Association   http://www.ilca-online.org )

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 Palmer, and AMMF’s Helen Morement.

At this meeting, chemotherapy trials for CC were discussed, both current and future – the discussions were both complex and technical, and involved much that was at a very early stage. Amongst the items discussed were the following trials:

BILCAP – preparation for the next study was discussed, which may not be called BILCAP-2 if Capecitabine does not prove to be effective. If it does prove effective, then the surveillance only arm would be dropped.

The ABC-03 trial (Cisplatin, Gemcitabine and Cedirinib) is on target to complete recruitment by September.

ABC-04 (Cisplatin, Gemcitabine and Selumetinib**) is in the planning and will be run from two centres – the Hammersmith and Christie hospitals. (**Selumetinib is thought to enhance anti-tumour efficacy when combined with conventional chemotherapeutic agents)

Subsequent biliary tract studies were discussed, including a small trial to study the use of chemotherapy before surgery (BBC-01 – CisGem and Cetuximab), and thoughts on grouping subsequent biliary tract studies into an ”umbrella study”.

Helen Morement took the opportunity to explain to the group that patients can find the randomised aspect of trials quite difficult to deal with, and can feel distressed at finding themselves on the “observation only” arm of a trial. This was noted, and the group agreed that careful consideration should be given to how this is presented to patients. This will be followed up.

*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. http://www.ncri.org.uk

Meeting with Professor John Primrose, 7th March 2011

Following on from the HB subgroup meeting, AMMF’s Helen Morement met Professor Primrose, (liver surgeon and CC specialist in Southampton) on 7th March to discuss further and clarify the subjects that arose in that meeting, including the BILCAP trial, questions put forward by AMMF supporters, and other areas of CC treatment.

Professor Primrose explained that BILCAP will be recruiting for a further 12-14 months. When pressed about interim results and the time frame until final results, he explained that trials are independently monitored and these monitors control when the trial is ready to be analysed (after a certain number of patients have had disease recurrence). The analysis is also carried out independently so the results are completely unbiased, and there is absolutely no way of knowing the full results until the end of the trial. However, he did say that that at present patients were actually doing better than had been expected, that the chemotherapy (Capecitabine) was being well tolerated and they are currently happy with the trial in every way. Final results were initially anticipated for 2014, but may now be later.

Professor Primrose was asked why treatment options seemed to differ in the USA from those in the UK. He explained that setting up trials in the USA was difficult because of the nature of their health care funding (and also because of difficulties with patients’ expectations, insurance companies and consultants). It is very difficult for them to run advanced trials as the UK does – in fact, in this respect, the UK is far ahead of the USA. Professor Primrose mentioned he wanted to run BILCAP and ABC-02 in the USA, but it was not possible because there are immense difficulties there in running trials with an observation arm. So collaboration at this level on research remains a problem. As the successor to the BILCAP trial will need to be international, this will probably include Australasia, because the problems in the USA make it too difficult to include them.

(NB: News just in on a new International Guidelines Panel. Further details coming soon. 12.03.12)

Surgery was discussed, and Professor Primrose mentioned the new study of a small group of patients who are to receive chemotherapy before resection for CC. He also mentioned that he now routinely carries out portal vein embolisation before resection for CC as that treatment, which encourages growth of the part of the liver to be retained, has been shown to be effective.

The subject of transplantation also arose – and Professor Primrose expressed his doubt about this becoming a “standard” treatment for CC, because CC often recurs systemically, and of course because of the shortage of donor livers.

Radiotherapy was touched on, but it seems the jury is still out on that one as there is so little data. He did mention bracytherapy and that there are some small trials underway in Hammersmith – the problem of systemic relapse with CC being raised again here. PDT (photodynamic therapy) was mentioned but, despite initially looking hopefully, trials there have now provided negative results. Lastly in this area, CyberKnife was discussed – again thoughts here were that trials would need to be conducted, and that the problem of systemic relapse was still a barrier to this sort of treatment.

At the end of the meeting,  AMMF’s aims to provide a complete information resource for all things to do with CC were discussed. The eventual hope is to include all centres and specialists with appropriate CC knowledge and experience on AMMF’s website. Professor Primrose agreed to help with this and we have now heard back from him that at the next meeting of the GB & Ireland HPB Association, “CC centres of excellence” will be discussed with a view to coming up with a list, which will be extremely helpful.

AMMF, now a patient representative on the NCRI HB subcommittee, hopes to be able to raise further questions on behalf of its supporters, and to receive answers on current thinking from those at the forefront of work on cholangiocarcinoma.

Posted 12.03.2012

We decided these posts shouldn’t just disappear into cyberspace, so they have been gathered together and are now available as a downloadable pdf –  and although photos haven’t been included, all the original links have been and are live within the pdf.

Thank you to everyone who took part in writing and sharing these posts – many tears were shed over them both in the writing and the reading – but if anything was needed to strengthen the resolve to find the answers, they did it!

February 2012 Awareness Month – FB Guest Posts

Helen (l) collects for the cup cakes

Despite being Practice Manager at a busy GP practice in Devon, Helen Tanner of Barnstaple had never heard of cholangiocarcinoma until she was diagnosed with it in 2010. Following her recovery from surgery, Helen has been a staunch supporter of AMMF and is doing all she can to raise awareness.

Helen’s staff at the practice have certainly taken up the cause with her. Their most recent fundraiser was a Cup Cake CChallenge (what a delicious idea) held during February’s Awareness Month. This raised the amazing amount of £131.70 - huge thanks to Helen and to all those who cooked and ate cup cakes, and donated so generously in support of AMMF!

Those cakes ...

Through her influence several fundraising activities have already taken place, and during February’s Awareness Month she was interviewed several times, appearing on BBC Radio Coventry & Warwickshire, in the Leamington Spa Observer and also in the Warwick Courier (to read this, click here )

Thank you for this wonderful support, Marcella.

Marcella with daughter, Lucy