A Diary OF A #Mesowarrior Living With #Mesothelioma #Asbestos – #BTOG2017 Conference Dublin


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Welcome to the
British Thoracic Oncology Group (BTOG)

The Vision of BTOG is to ensure equitable access to optimal care for patients with all thoracic malignancies
in the UK and Ireland.

The Mission of BTOG is to support and educate health care professionals, creating a professional community to exchange ideas, information and innovation and to foster the development of research.  The overall aim is to represent the needs of patients and improve their outcomes.

I was so honored to be asked to join this Conference as an Advocate so we had to take Louis to my Son and DIL in Luton so the dog sat for us.

We then went to the Airport on  Tuesday to fly on a very good flight, except the lady in security took everything off me.

My hairspray, my cough medicine and cream for my skin. I know they were over 100ml but I had used them so I thought it would be OK and also I didn’t take a copy of my prescription to prove I needed the cream. Oh well I will know next time.

I had to take my shoes off and they lost them as they were put in another tray. I was body searched. Gosh you have to switch off for the minute or scream.

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The pressure did drop in the cabin a couple of times making breathing harder and labored but we coped fine.

Landing, passport control was very busy and the walking involved with the dividers pegged out was really too much.

Catching the Airbus we traveled around all the hotels in Dublin so we had a great tour.

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The Clayton Hotel was lovely and we soon settled into the room so clean and so warm.

We had an early night after a meal in the bar served by a lovely young man who we had a long conversation about his life and how he came to Ireland from Croatia.

Wednesday we woke and after breakfast we registered and met so many old friends and new. People were coming up and saying, You won’t know me but I heard your speak here or there, or we are on Linkedin together or I follow you on Twitter it was so social media and nice to put a face to a name.

BTOG Chair, Dr Sanjay Popat. Opened the Day Image result for BTOG Chair, Dr Sanjay Popat.

We are great friends as He is from The Royal Marsden as knows me well. He called me their star which made me smile.

My other hero was there Dr Peter Szlsarek MD, PhD Dr Fennel couldn’t make it Jeremy Steel was there and my own Oncologists Matilda Comonos  and Dr Riyaz Shah BSc (Hons), MBBS, PhD, FRCP
Consultant Medical Oncologist.

So what with all the lawyer friends and Mesothelioma UK Nurses, MSD I was in great company.

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I have to mention Mike Peak

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We adore one another and I love listening to him and his talks.

There was so much talked about but the ones that stand out are

Mike DAube from Australia talking about Tabacco Control 2017 The Australian Story

https://www.theguardian.com/news/2016/aug/01/the-doctor-who-beat-big-tobacco

Mathew Callister who is a Respiratory Physician at St James Hospital Leeds who gave us Advocates a wonderful talk about Scans showing us and explaining all the details of a CAT Scan and PET Scan. I was so enthralled I begged ha came to Mesothelioma UK Patient and Carers Conference in Oct and Liz Darlison invited him. I look forward to meeting him again.

I hope Liz forgives me missing her talk. I hadn’t realized they made 1 room into 2 The Herbert and the Pembroke. So I was sitting in the Herbert and she was talking in the Pembroke and calling for me as she was talking about Social Media and the role it plays. It was great to hear though that Mesowarriors UK is seen as a support group. We have risen in status within the BTOG and NHS system. We are joined to Mesothelioma UK and we will publish all their news and Support for Asbestos Cancer.

There are several Trials starting or on its way. We Mesowarriors UK as a group have got a standing and all the people at the conference see us a good support group. I have been asked to talk to you all If you are interested in trials please make sure you know where your Bi-Op tissue is as it is taking as much as 5 months to trace some and that is wrong. Some trials are even asking us to come along with our paraffin tissue samples. So make sure you know where yours is for now and the future.
I have also been asked to been asked to go on the panel of MARS 2 as a  We have been filling this trial up and Im so proud of you all We need more though so please think about it if you want the Operation  please talk to your Oncologist http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-at-surgery-for-mesothelioma-mars-2

The List of trials please talk to your Oncologist lets educate The list of Speeches here if there is anything you want explaining please contact me and I will go into it as there is just too much to blog about. http://www.nhs.uk/Conditions/mesothelioma/Pages/clinical-trial.aspx

Study of Nivolumab Combined With Ipilimumab Versus Pemetrexed and Cisplatin or Carboplatin as First Line Therapy in Unresectable Pleural Mesothelioma Patients Recruiting United Kingdom
Malignant mesothelioma – can we improve quality of life? Recruiting United Kingdom
A Phase II Trial to Assess TroVax® Plus Chemotherapy in Patients With Malignant Pleural Mesothelioma Recruiting United Kingdom
Study of the EZH2 Inhibitor Tazemetostat in Malignant Mesothelioma Recruiting United Kingdom
Nintedanib (BIBF 1120) in Mesothelioma Recruiting United Kingdom
PIT: Prophylactic Irradiation of Tracts in Patients With Malignant Pleural Mesothelioma Recruiting United Kingdom
MARS 2: A Feasibility Study Comparing (Extended) Pleurectomy Decortication Versus no Pleurectomy Decortication in Patients With Malignant Pleural Mesothelioma Recruiting United Kingdom
DIAPHRAGM: Diagnostic and prognostic biomarkers in the rational assessment of mesothelioma Recruiting United Kingdom
Ph 1 Study in Subjects With Tumors Requiring Arginine to Assess ADI-PEG 20 With Pemetrexed and Cisplatin Recruiting United Kingdom
Study of the Safety and Efficacy of Amatuximab in Combination With Pemetrexed and Cisplatin in Subjects With Unresectable Malignant Pleural Mesothelioma (MPM).
The efficacy of sonographic and biological pleurodesis indicators of malignant pleural effusion (SIMPLE) Recruiting United Kingdom
Zoledronic acid in the management of malignant pleural mesothelioma Recruiting United Kingdom
SPECTAlung: Screening Patients With Thoracic Tumors for Efficient Clinical Trial Access Recruiting United Kingdom
SYSTEMS 2: a randomised phase II trial of standard versus dose escalated radiotherapy in the treatment of pain in malignant pleural mesothelioma Recruiting United Kingdom
Chest Wall Motion Analysis in Disease Recruiting United Kingdom
Randomized, Double-blind Study Comparing Tremelimumab to Placebo in Subjects with Unresectable Malignant Mesothelioma Not Recruiting United Kingdom
A Phase III, Randomized, Double-Blind, Placebo-Controlled Trial of Oral Suberoylanilide Hydroxamic Acid (Vorinostat, MK-0683) in Patients With Advanced Malignant Pleural Mesothelioma Previously Treated With Systemic Chemotherapy Not Recruiting United Kingdom
Ganetespib With Platinum, in Patients With Malignant Pleural Mesothelioma Not recruiting United Kingdom
A randomised controlled trial to assess the efficacy and safety of patient controlled maligant pleural effusion drainage by indwelling ambulatory pleural catheter, compared to standard care Not Recruiting United Kingdom
A Phase 1 Dose Escalation Study of VS-5584 Administered in Combination With VS-6063, in Subjects With Relapsed Malignant Mesothelioma Not recruiting United Kingdom

http://www.btog.org/editorimages/BTOG%202017%20Programme%20FINAL4.pdf

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