AMMF News
AMMF launches ‘Our CC Family – Your Story’
For the past five years during each February, Cholangiocarcinoma Awareness Month, AMMF has run a daily Guest Post feature on Facebook, which has proved to be extremely important to our supporters. Over those years, the response to this feature has grown enormously and, because of the limitation of the number of days in the month, we know that ea...
Read MoreNow Published! The MDT: Cholangiocarcinoma Patients’ Observations
“The multidisciplinary team meeting in the UK from the patients’ perspective: comments and observations from cholangiocarcinoma patients and their families” The thoughts of cholangiocarcinoma patients and their families on what they understood an MDT meeting to be, and their experiences around such meetings, were the basis of a paper by AMMF CEO Helen Morement, which has now been publis...
Read MoreThe Cancer52 CNS Report
Through their work, Clinical Nurse Specialists (CNS) can bring invaluable support and humanity to the treatment and care of their patients. To demonstrate the importance of their work, and how it can improve the quality of life for patients diagnosed with the rare and less common cancers, Cancer52¹ have produced a report: “Clinical Nurse Specialists working with people with rare and less common...
Read MoreAMMF joins European Reference Network (Rare-Liver)
AMMF is now a representative and advocate for cholangiocarcinoma patients within ERN-RARE-LIVER, the rare hepatic disease section of the European Research Networks. ERN RARE-LIVER is looking to connect expert centres across Europe, including the UK, to improve access to diagnosis, treatment and high quality care for patients with rare liver diseases. To find out more about the work of the ERNs click...
Read MoreProfessor Narong’s fight against cholangiocarcinoma hits the headlines
The work of Professor Narong Khuntikeo, who was a keynote speaker at AMMF’s cholangiocarcinoma conference earlier this year, has been hitting headlines in the health sections of the British press over the last few days. In the Isaan region, which has the world's highest incidence of cholangiocarcinoma¹, millions of Thais regularly eat a dish made from fresh water river fish. This fish dish, koi ...
Read MoreNew insights to the mechanisms driving cholangiocarcinoma
An enormous unmet clinical need exists for novel therapies in cholangiocarcinoma (cancer of the bile ducts). This disease has a poor prognosis; patients often present too late for the only curative procedure - surgical resection, and investigations to obtain tissue for diagnostic confirmation are invasive and often inconclusive. There is currently no serum biomarker of the disease, which would aid early dia...
Read MoreAMMF’s Conference 2017 – Presentations
Here we share some of the presentations from AMMF's Cholangiocarcinoma Conference, held on 11th May 2017. (Please note, we are unable to share the research presentations as much of the work we heard about is as yet unpublished and, for that reason, must remain confidential.) To download Dr Shahid Khan's presentation, “Cholangiocarcinoma - An overview”, click here ...
Read MoreThe BILCAP study results …
With the kind permission of Professor John Primrose, AMMF is now able to share the BILCAP presentation slides from the ASCO 2017 meeting. These slides show details of the BILCAP study and its outcome. The study looked at whether or not giving cholangiocarcinoma patients Capecitabine chemotherapy following resection would be beneficial. The outcome is positive - Capecitabine will now be recommended t...
Read MoreBILCAP results show chemo improves survival
AMMF welcomes the encouraging results announced today by Cancer Research UK following the BILCAP trial into the use of the chemotherapy drug Capecitabine (Xeloda) for bile duct cancer (cholangiocarcinoma) patients following surgery. The three year survival improved by almost a quarter (23 per cent) in patients who were given Capecitabine, and the average survival was increased to 53 months from 36 months...
Read MoreAMMF’s Cholangiocarcinoma Conference 2017
AMMF will bring together scientists, researchers, medics and patients from around the world at its conference dedicated exclusively to cholangiocarcinoma, on 11 May, 2017 at the Radisson Blu Hotel, Stansted Airport, Essex. With the date just a couple of weeks away, a press release has now been distributed sharing information on what promises to be a very interesting and thought provoking day ... &...
Read MoreAMMF CEO interviewed by Pan European Networks journal …
AMMF CEO Helen Morement was recently interviewed by the Pan European Networks journal and, in a 3-page article, discusses some of the known and suspected causes of cholangiocarcinoma, why diagnosis remains so difficult, current and future treatment options, as well as the wider work of the charity throughout the UK and beyond. With the article published just ahead of the second World Cholangiocarcinoma Day...
Read MoreESMO Guidelines – SIRT an option for iCC
The new ESMO Biliary Cancer Guidelines indicate Selective Internal Radiation Therapy (SIRT) with Y-90 Microspheres as an option for post-chemotherapy treatment of intrahepatic cholangiocarcinoma (iCCA). The new ESMO1 guidelines on biliary cancers2 were published in September 2016 as a supplement to the Annals of Oncology. Their lead author, Professor Juan Valle of the Christie NHS Foundation Trust, Univers...
Read MorePCI Biotech CCA study selected for presentation
Oslo: October 17, 2016 – PCI Biotech, the cancer focused biopharmaceutical company, announced that an abstract with results from their Phase I cholangiocarcinoma study had been selected for oral presentation as late-breaking news at this week's United European Gastroenterology (UEG) conference in Vienna, Austria. The results will be presented by Dr. Alexander Dechêne, University Hospital Essen, Germany,...
Read MoreEdinburgh study identifies CC trigger …
AMMF is delighted to see that the positive research findings of work the charity has been co-funding at the University of Edinburgh have been published in the Proceedings of the National Academy of Sciences. The Edinburgh team have identified a molecule that is a key driver in the development of bile duct cancer (cholangiocarcinoma). They have shown that this molecule - Notch 3 - triggers a pathway o...
Read MoreUpdates on transplant, trials and more …
AMMF’s Helen Morement reports on the NCRI Hepatobiliary Clinical Trials group meeting, June 2016 In my capacity as a patient representative and advocate, I attend the regular NCRI Hepatobiliary Clinical Trials group meetings, where I get the opportunity to put forward questions and seek information on behalf of cholangiocarcinoma patients. The members of this group are concerned wit...
Read MoreSweet drinks and biliary tract cancer; is there a link?
A new study from Sweden has been much in the news lately, linking the consumption of sugary drinks, juices as well as sodas, to biliary tract cancer (bile duct cancer/cholangiocarcinoma) and gallbladder cancer: "People who consume at least two juice drinks a day had more than twice the risk of developing gallbladder tumours and a 79 per cent higher risk of cancer in the liver bile ducts, according to a new...
Read MoreAMMF joins European Cancer Patient Coalition
AMMF is pleased to have joined the European Cancer Patient Coalition (ECPC) as a full member. ECPC is the largest European cancer patients' umbrella organisation, representing 370+ organisations in dozens of countries. One of the coalition's main aims is to ensure no cancer is forgotten. Providing a unified voice for cancer patients across Europe, ECPC is working towards equality for all cance...
Read MoreAMMF’s “inspirational meeting”
AMMF's Information Day at Imperial College London, 10 May 2016 Malcolm Robinson, CC survivor and longstanding AMMF supporter, summed up the thoughts of many of those who attended AMMF's Information Day on 10 May at Imperial College London: “A wonderful opportunity to find out just how all the AMMF fundraising efforts of our supporters is invested in medical experts of the highest quality and dedicatio...
Read MoreThe Two Toms in Thailand
Two Imperial College London 'medical students to be', Tom Hughes and Tom O'Connor, have taken on an elective period of research and study into cholangiocarcinoma in Kohn Kaen, Thailand, and are sharing their experiences with AMMF. The Two Toms blogged especially for the inaugural World Cholangiocarcinoma Day on 17 February 2016 - to read...
Read MoreAMMF in Thailand 2016
The incidence of cholangiocarcinoma is increasing, not only in the UK but throughout the world. It is certainly a global problem, but Thailand has the world's highest incidence of this disease, with the Isaan Province in the north east of the country being the epicentre. Following the 3-day international cholangiocarcinoma workshop in Khon Kaen in north east Thailand in 2014, which AMMF attended, and w...
Read MoreAMMF launches Discussion Forum
After many requests, AMMF has now launched a Discussion Forum on its new, revamped website. The Discussion Forum is for everyone whose life has been touched in any way by cholangiocarcinoma (bile duct cancer, biliary tract cancer, gall bladder cancer) providing an area where patients, family members, carers, supporters, fundraisers and those who have been bereaved, can talk about all things related t...
Read MoreCC Awareness Month 2016 Guest Posts
Thank you to each courageous person who contributed a Guest Post for AMMF's Facebook page during Cholangiocarcinoma Awareness Month, February 2016. We know that each of these posts is a personal story, with every word written from the heart - which is exactly what makes them so very special. This year, the number of likes, shares and supportive comments each Guest Post received was beyond anything we ...
Read More“Progress with targeted agents in cholangiocarcinoma – reality or myth?”
At the ESMO1 17th World Congress on Gastrointestinal Cancer held in Barcelona in July 2015, Professor Juan Valle, consultant and medical oncologist at The Christie, Manchester UK, and one of AMMF’s medical advisors, spoke about the progress being made in the understanding of cholangiocarcinoma, the studies being carried out to find target agents, and also genomic profiling, in the search for better and mo...
Read MoreGWAS Cholangiocarcinoma Study
The Genome-wide Association Study (GWAS) for Cholangiocarcinoma Professor Simon Taylor-Robinson and Dr. Shahid Khan at Imperial College London are collaborating on the GWAS project with the Mayo clinic in the USA1, as one of their ongoing studies in cholangiocarcinoma. If you2 would be interested in donating blood and urine samples for analysis to the Imperial Hepatology & Gastroenterology BioBank...
Read MoreInterim Report from AMMF’s Research Fellow
AMMF has just received an interim report from the Institute of Hepatology in London on the cholangiocarcinoma research work being carried out there by our Research Fellow, Dr Gemma Choy. This work has involved investigating whether the MAPK signalling pathway allows intrahepatic cholangiocarcinoma cell proliferation. We are very pleased to learn that the project is progressing well with results to date...
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