Living With Mesothelioma -My Diary- My time at the Manchester Oncology Forum 2014


I will have to do this blog in 2 parts as we have a video of my speech but it has to edited and sent to U tube. A long process. So lets have the personal look today.

Lets look at the photos and i will comment as we go through the wonderful time I have had.

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On the train to London this group of people were on their way to Ascot and they included us in their Champagne Breakfast only the Boss that sat with us thought Ray need it on his trousers. I said dont worry it will dry and smell lovely all day. They were all from an estate Agency in rainham. It made our trip to London just so special.

We then battled the Underground to Euston but everyone was so kind and helped us with our case on the escalators.

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Euston we found our Virgin train to Manchester and we had been booked into 1st class travel so our seats were reserved and we settled in for the longer journey.

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Lots of staircases in the hotel. A wonderful old building.http://www.palacehotelmanchestercity.co.uk/about-us/

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our bed

 

 

 

 

 

 

 

Our Bedroom was huge.

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I loved the rooms and it reminded me of Mr Selfridge

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We sat and rested and then it was time for Afternoon tea. We had so many people to meet.

The Form was opened by by Prof Daniel Hochhauser Oncology Forum Vice Chair.

Professor Alexandra Eggermont was a Keynote speaker

He had me in tears as although he talked of The Re Naissance of immunotherapy for Skin Cancer he was talking about my PDL Trail with such keenness and evidence of working I was so humbled that I was in the Mesothelioma trial of the drug.

Liz Darlison came over at the end of the speech and we cried together and hugged. What a wonderful moment of realising –This is going to work.

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Peter Sissons ran the Question time

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The Panel was  Prof Mark Baker, Mike Birtwistle, Simon Crompton, Liz darlison, Dr Clive Peedell and Prof Clare Wilkinson.

This was run very professional just like on TV. It was filmed so I hope to get a copy to show you all.

We then got ready for evening Dinner.

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Deep in Conversation with the Lorraine Dallis a Director of Info and support for the Roy Castle Lung Cancer.

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Dean Fennel came in late and sat on our table. it was so lovely to meet up again.

The meal was really good and we then went off to bed shattered.

Next morning we all came together for a breakfast to set ourselves up for the day.

9am we were all in the Grand Room where Prof William Steward Chaired and spoke to us about the day ahead. We all split up into separate groups under the heading of different Cancers.

So I was in the Delivering Care to the Uk NHS Cancer Patient..The hotel has so many rooms used for conferences it was amazing.

I was speaking with Liz Darlison who Chaired the meeting Lorraine Dalles for the Roy Cancer lung foundation, Dr Mick Peake Consultant and Senior Lecturer in Respiratory Medicine, Mike Birtwistle, health policy expert Incisive Health.

Then Me little old me. I was billed under Onestop Mesothelioma which is my web page. I realised that it had become an official web site presented to the NHS as everyone was from or involved with the NHS. It was a very proud moment.

I have to add Uk to the tittle now.

I hadn’t realised people were recommending the site to new patients as it is for and written by me –The Patient.

We all gave our speeches and everyone was so good but I suddenly saw that my Speech fitted in so well. Me My disease and my”high cost” treatment. A patients story about undergoing high cost non curative treatment.

Ray has videod so we will send up to You Tube when we have edited it. that will take time but it will be done ASAP.

Everyone congratulated me afterwards I was so proud as I have mentioned the warriors and facebook.IATP, ADAO and Bernie Banton as we have come together on a Global scale.

So that was it we met up again in the Grand Room and Prof John Burn talked about mismatched repair deficient cancers, diagnosis, treatment and prevention. He is going to market a hand held DNA machine at the cost of a phone.

Then the amazing discovery that 2 aspirin is being trialled as a prevention to colon cancer.

http://www.cancerresearchuk.org/science/research/who-and-what-we-fund/browse-by-location/newcastle/newcastle-university/grants/-15934-cruk-12-039-capp3—a-double

Background: CAPP2 recruited worldwide 1009 people with the Lynch syndrome (LS) who are at high risk of hereditary cancer due to being carriers of mismatch repair gene defects; it showed, in a randomised placebo controlled trial format that 600mg daily aspirin for 2 years results in 63% reduction in colorectal cancer and similar reduction in other related cancers, apparent from 4 years (Burn et al Lancet 2011). It is important to establish whether this protective effect can be achieved with lower doses of aspirin and, consequently, fewer adverse events and to support translational studies of underlying mechanism. Aims: CaPP3 will be a double blind randomised dose inferiority trial (RCT) designed to compare the degree of cancer prevention resulting from three daily doses of enteric coated aspirin; 600mg, 300mg and 100mg. Methods:Recruits will be adults of 60 or under who have been shown to have a constitutional pathological variant in one of the mismatch repair genes (hMSH2, hMLH1, hMSH6 or PMS2), who are not known to be sensitive to aspirin. The UK regional genetics centres have identified approximately 6500 adult LS gene carriers (based on 2011 audits) and all are under 1 to 2 yearly followup colonoscopy. Gene carriers will be consented and blood/ saliva biobanking samples collected before blinded dose allocation via secure website: www.capp3.org, regular review and cancer registry data will be combined to assess impact on new cancers and adverse events related to medication for at least 5 years. Sample size calculation used CAPP2 observed “survival probability” for all Lynch related cancers and colorectal cancer: 0.889 and 0.949 after 5 years respectively. The null hypothesis is that 600 mg aspirin as active control is superior to the new treatments (300 mg and 100 mg aspirin). We have estimated that all Lynch syndrome cancers will be reduced by 50% using 600mg while 100mg will result in a 25% reduction. If 300mg results in a 30% reduction, the target would be to follow 1000 participants in each group. Parallel studies in other countries using the same randomisation are under development and will provide greater power. Application: This trial will establish a new international standard of care in hereditary cancer and inform the debate about more widespread use of aspirin to prevent cancer, especially in people with a personal or family history of cancer.

We all had a buffet lunch and gradually people left to get their trains. We were staying on though for another night as i wanted to rest before the journey home.

Im pleased we did as we had a late dinner and then went to be early. haha !!! Manchester is like London it didnt sleep. Loads of noise of clubbers going for their late train/ well very early morning and sirens going. But it did finally go quiet but I couldnt sleep. My head was so full of so much info and I had just had the time of my life.

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Waiting for the taxi this morning back to the station. We were on our way home, tired but very happy. Thank you Oncology Forum for this wonderful opportunity to meet the Wonderful people that dedicate their lives to Cancer and the NHS.

A huge thank you.

Rays Blog http://mesoandme.wordpress.com/2014/06/21/saturday-3-days-in-manchester/

 

One thought on “Living With Mesothelioma -My Diary- My time at the Manchester Oncology Forum 2014

  1. Mavis, glad to know that you had a wonderful time, in the company of people you know, respect, and admire. Glad also to know that you and Ray are back home safely. A very enjoyable update to your blog, and I look forward to viewing the video, when available.
    Take care,
    Jock. xxx

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