Living With Mesothelioma My Diary Mesothelioma UK 2014 Conference










I learnt at the Mesothelioma UK conference so much.

Dr Michael Peake Honorary Consultant and Senior lecturer in Respiratory Medicine  Gave a very interesting Cover of the National Lung Cancer Audit

Professor Dean Fennel spoke about Trials and the fact that we all react differently to trials. That in fact something I always believed in was that we respond to Maintenance after a coarse of Chemo.

That also they have to identify patients that will respond to treatment by taking into consideration the type of Mesothelioma So many factors come into play before they can say whether the patient is fit and able to withstand treatment.

Dean also talked about the trials that are available and the ones that will be available next year.

Immunotherapy is really showing success as I have proved with MK3475

Study in Subjects With Tumors Requiring Arginine to Assess ADI-PEG 20 With Pemetrexed and Cisplatin (ADIPemCis) (TRAP Study) The Command trial is underway with success We believe that defactinib targets cancer stem cells. Cancer stem cells may cause tumor growth. The COMMAND Study will help find out whether defactinib could be a safe and effective approach for treating malignant pleural mesothelioma.

Approximately 40-50% of mesothelioma patients lack Merlin and studies by Verastem and others have shown that Merlin-low mesothelioma cells and tumors appear to be particularly sensitive to FAK inhibition. Verastem’s study is designed as an adaptive, double-blind, placebo-controlled trial to evaluate the effect of VS-6063 in both the overall patient population and also those who’s tumors are Merlin-low.

Trap Trial Study in Subjects With Tumors Requiring Arginine to Assess ADI-PEG 20 With Pemetrexed and Cisplatin (ADIPemCis) (TRAP Study)

Dean said the money is coming through now for Research and trials so there is a great year ahead 2015

Please keep watching

Here there is a map of where the trials are.

Dominic Nutt could attend due to the fact his daughter is ill and in Hospital. He sent a explanation of Lord Saatchis Bill for us to read. He wrote how under the Bill the doctor will know in advance that he or she is protected and so the Bill will create confidence.

The Bill will set out a clear procedure to follow. It will take away the stress of Innovation.

I was proud to have played a part 


I then took the stage where I delivered my Speech but I was very Emotional










After Lunch Brian Sullivan of Verastem spoke about Working to Improve Outcomes and the development of a Drug Treatment  Verastem, Inc. (NASDAQ:VSTM) is discovering and developing drugs to treat cancer by the targeted killing of cancer stem cells. Cancer stem cells are an underlying cause of tumor recurrence and metastasis. Verastem is developing small molecule inhibitors of signaling pathways that are critical to cancer stem cell survival and proliferation: FAK, PI3K/mTOR and Wnt

Brians Presentation is as a download .

Then we had a lovely session of Introducing Patients and their stories. We all tell the same story of Pain and Infusions and treatment.

After Lunch was a Liz Darlison Consultant Nurse at Mesothelioma Uk talking about Fundraising.

July saw the many Action Mesothelioma Day events which were held and at the Leicester Action Mesothelioma Day I had the opportunity and pleasure in telling how far Mesothelioma UK has come since the Resource
Centre began back in 2004. As some of you maybe aware our first Mesothelioma Specialist Nursing post was and still is held by Liz Darlison, she secured the original funding and was pivotal in setting up the resource centre
as it was recognised that this was fundamental to improving access to specialist care and support for patients and their families. In late 2009 I joined the charity which is when financial independence came, which back then seemed a huge and at
times an impossible task, but today just four years on we now have 4 further specialist nurses in Cambridge, Wales, Portsmouth and Bristol and later this year 4 more will start in Manchester, Oxford, Sheffield and the North-East.
To give an idea of what this means for Mesothelioma UK, we fund 2 days per week of each post and each specialist nurse has local, regional and national mesothelioma specific responsibilities. They also support our aims and objectives and this costs the
charity around £20,000 per year to fund each individual nursing post. Subject to funding, we hope to fund 2 more nursing posts starting in 2015 which will be 11 specialist nursing posts funded by Mesothelioma UK in the UK. Our
ultimate aim is to fund a total of 18 specialist nurses in England, Scotland, Wales and Northern Ireland. The UK has the highest number of sufferers in the world which is why it is vital that we continue to push for
research, not only for this generation but to help protect future generations. Asbestos is prevalent in this country and will be for a long time to come which continues to put us all at risk, so investment into researching
the causes and a potential cure is desperately needed. The theme for Action Mesothelioma Day this year was to call for long term investment into mesothelioma research and we very much support this initiative and do
hope that you will all sign the petition.Our current fundraising target is £426,000 for the 2015/16 year and our vision is that this will happen and we will progress and meet our aims and targets because of the wonderful
support we receive everyday from you our fundraisers and sponsors. I speak on behalf of the Mesothelioma UK team and Trustees when I say that we feel privileged to do what we do and to be given the opportunity to meet
some truly inspirational people.










Then Mary Hesdorffer talking Peritoneal Mesothelioma. I found a you tube Interview where it out lines her speech.

Then Dr Nicky Rudd spoke about Management of Pain and Sarah Beard had us Move it or Lose it

Liz then Gave us an update to then close the Conference.

Through the eyes of another blogger  Claire Cowley whi the Carer and Paul the Patient xxx

Rays Blog







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