National Macmillan Mesothelioma Resource Centre. Bulletin April 2008 MESOTHELIOMA UK UPDATE

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1 Direct Line Fax Helpline Website MESOTHELIOMA UK National Macmillan Mesothelioma Resource Centre Bulletin April 2008 MESOTHELIOMA UK UPDATE Mesothelioma UK, via the freephone helpline and , currently receives approximately 800 contacts a year. The website which is continually being reviewed receives over 1000 hits each month. This summer Meso UK will hopefully launch as an independent charity and start raising funds to secure the future of current services. The Mesothelioma Nurse Action Team (M-NAT) have held their second meeting and have decided to concentrate on preparing a full national Mesothelioma information pack and an audit of current nurse involvement with Mesothelioma patients across the country. M-NAT is linking with Macmillan s Communities of Practice initiative which will provide some very welcome support for the team s progress. Meso UK have booked the 3 rd Mesothelioma UK Patient/Carer day. It will be held on Saturday 4 October 2008 in Leeds. Details on Page 6. TRIALS UPDATE MARS MARS (Mesothelioma and Radical Surgery) is a multi-centre randomised controlled trial comparing extra-pleural pneumonectomy (EPP) (within the context of tri-modality therapy) versus no EPP. The trial is sponsored by Guy s and St.Thomas NHS Foundation Trust and is currently in the feasibility phase aiming to randomise 50 patients. This will allow reasonable inferences to be drawn regarding recruitment, compliance and feasibility of surgery. At diagnosis, and following consent, potential MARS patients are registered into the pilot study from one of 14 local participating centres. Patients are then prescribed 3 courses of a platinum based chemotherapy and undergo mediastinoscopy. Following re-staging patients are then reviewed by a virtual multidisciplinary team (vmdt) comprising members of the Trial Management Group and includes the Chief Investigator (Tom Treasure), at least one surgeon, radiologists, oncologists and members of coordinating trial team within the Clinical Trials and Statistics Unit at the Institute of Cancer Research (ICR-CTSU). The patient s clinician from the local centre is also invited to join in the discussion. Following evaluation of suitability for surgery and radical radiotherapy, eligible patients are asked to consent to randomisation. If the patient is allocated EPP this will be performed at one of three specialist surgical centres (currently Guy s, Leicester or Leeds) and will be dependent upon geographical location (where possible) but also on surgeon availability. Further surgical centres are at present proceeding with approvals which will provide patients with wider availability across the UK. 1

2 It is expected that patients who have had EPP surgery will also undergo radical radiotherapy, provided at a separate radiotherapy centre if the local centre is unable to provide this service. The pilot phase has taken considerably longer than expected to set up, given the need to establish complex logistical and clinical arrangements. Recruitment is now steadily increasing and Cancer Research UK have extended the funding to the Autumn of 2008 by which time recruitment must be complete. By mid April 2008 ninety-seven patients had been recruited to the registration phase and forty randomised. Centres are therefore urged to screen all mesothelioma patients for entry into MARS to help achieve the target accrual by September The next phase of conducting a mesothelioma surgical trial will then be considered at a general meeting to which all those involved will be invited. We are very grateful to all clinicians and research nurses for their hard work in helping with this very important trial and our sincere thanks go to the patients who have kindly agreed to take part. If you would like any further information please contact The MARS Trial Office via or one of the team on /4039. MALCS MALCS (UK National Mesothelioma and Lung Cancer Study) was set up over 6 years ago to estimate the Mesothelioma and lung cancer risks caused by specific occupations and work practices across the UK, particularly those involving asbestos exposure. A report based on the first 624 Mesothelioma patients and 1420 controls has been submitted for publication. The well known asbestos exposure hazards in dockyards, on ships, in asbestos factories, in power generation and in insulation still account for 25% of all Mesothelioma cases; but the majority of cases are in construction or other industries. Part 1 Results The lifetime Mesothelioma risk for British men born between 1940 and 1960 who did more than 10 years of relevant work before age 30 will be about 6% for carpenters and 2% for plumbers, electricians and painters, with lower but still substantial risks to general construction and other workers exposed to asbestos. The lifetime risk in unexposed men and women (about 0.1%) is doubled in those who lived with an exposed worker before age 30. There was no overall risk in men and women who reported living within a mile of an asbestos factory, shipyard or power plant. The excess of lung cancer in asbestos exposed workers appears to be similar to the Mesothelioma risk. Are you Recruiting? MALCS is open until The patient completes a postal questionnaire (not a telephone interview as in part 1). Britain already has the highest Mesothelioma rate worldwide and the rate is still increasing 25 years after asbestos use virtually ceased. Funded by Cancer Research UK and HSE recruitment to MALCS continues. We need to document the origins and evolution of this extraordinary public health disaster. In addition, recruiting lung cancer patients enables further assessment of the relationship between asbestos and lung cancer. Please notify the MALCS study team of the following patients: Male Mesothelioma patients born since 1940 Male primary lung cancer patients born since 1940 who have had a lung resection Female Mesothelioma patients born since 1925 For more information contact the study team by or tel:

3 Chemotherapy in Mesothelioma Project (ChiMP) On 24 th January 2008 the ChiMP project went to Dublin where it was presented by Liz Darlison to the BTOG members. The Project was received in a positive and enthusiastic manner and delegates were very keen to know more about the project. We had a stand in the main hall which generated a lot of interest and we gave over 30 registration starter packs and leaflets away. ChiMP registered over 20 sites that day which was fantastic for the project. On the 1 st February 2008 the ChiMP project was officially launched and the response was exceptional. In the first two months over 30 sites registered. In the first week we had our first 3 patients registered from The Queens Hospital Burton, Congratulations and well done to Burton. The last 2 months have seen a steady increase in the number of patient registrations and enquiries and we now have sites with several patient registrations due to how user friendly the system is. I hope this will be encouraging for the sites yet to register their patients with us. We are still looking for more Oncology centres to register, please ensure the Oncology centre you refer to is involved in the audit. Where We Are Now? We are now 3 months on since ChiMP was launched and are well on our way to achieving our aim to have all 158 Lung MDT sites throughout England registered with us. We haven t quite achieved this target yet so if you haven t registered to date please do so today. Thank you for your support, we continually need your help to make this project a success. Jill Lemon Mesothelioma Audit Manager British Lung Foundation Action Mesothelioma Day Summary The BLFs Action Mesothelioma Day 2008 campaign successfully took forward the Action Mesothelioma Charter. It achieved more media coverage and greater parliamentary activity than the previous year s campaign. Overall media coverage rose by 68% to 330 items of coverage o Highlights included BBC Radio 4 s Today programme BBC Radio 2 BBC Radio 5 Live Breakfast The Sun The number of MPs attending the parliamentary reception rose by 45% to 58 with Early Day Motion signatures up 24% to 144 Aims of AMD 2008 The main aims of the BLF s campaign were to: Raise awareness about the health risks posed by asbestos amongst the most at-risk group ie tradespeople (Mesothelioma Charter point 13) Highlight the need for more research into the disease (Mesothelioma Charter point 10) 3

4 Assess and highlight progress on implementation by England s Cancer Networks of the new Mesothelioma Framework (Mesothelioma Charter points 1 7) Continue to highlight distressing coroners practices following a mesothelioma death and press for change (Mesothelioma Charter point 8) Campaign The main elements of the campaign were: Awareness campaign launch of the result of a BLF tradespeople asbestos awareness survey with celebrity support from Craig Phillips (DIY expert and winner of Big Brother 1) Parliamentary campaign House of Commons reception on February 27 highlighting progress on the Mesothelioma Framework and current Coroners practices following a mesothelioma death Publication of BLF patient guide to the Mesothelioma Framework Publication of guidance for clinicians on informing patients about coroners procedures following a death from Mesothelioma Publication of guidance for coroners about how to deal with those bereaved by mesothelioma Online campaign asking people to their MPs about the EDMs Mesothelioma highlighted on the BLF website Action Mesothelioma: end the insensitive treatment of bereaved families The British Lung Foundation has been approached by a number of families who have been treated in a way insensitive to their needs following the death of their loved one from Mesothelioma. We are therefore campaigning to improve the treatment of bereaved relatives following a death from this asbestos-related chest cancer. As was highlighted in the report <http://www.lunguk.org/media-and-campaigning/special-reports/> An Unnatural Death by the British Lung Foundation, when a death from mesothelioma occurs outside of coroner s working hours the bereaved are at times visited by uniformed police in a marked police car, sometimes in the middle of the night. During this time the bereaved are questioned about the cause of death so the coroner can write a report. However, people who have experienced this say that they found it extremely distressing and that they felt as if they were under suspicion. We believe that coroners inquiries should be carried out in a more sensitive manner and that the practice of sending uniformed police officers in marked cars to the home of recently bereaved families should be stopped. We also ask clinicians to prepare families for these procedures so that they do not come as a shock to them following the death of their loved one. It was hoped that these important changes would have been brought about by the Coroners Bill, had it been given time in Parliament. Following the third Action Mesothelioma Day, and the lack of progress of the Bill, the British Lung Foundation is renewing its calling for the needs of bereaved families to be put at the centre of the coroners system and for a Chief Coroner to be appointed to set national standards for the procedures following a death from Mesothelioma. To get involved please your MP to ask them to demonstrate their support for the campaign by signing EDM 1128: Coroners Bill and the Treatment of Mesothelioma Patients and writing to Jack Straw, Secretary of State for Justice, to ask what plans be has for improving the coroner s system. Thank for your continuing support for the British Lung Foundation s campaigns. If you would like to know more about our campaigns then please us or keep regularly checking back to our website for further information. 4

5 Prophylactic Irradiation to Intervention Sites in Mesothelioma Questionnaire Dear Colleague, We wish to conduct a survey into the use of prophylactic irradiation to intervention sites in Mesothelioma. Many centres still do this based on data which is now 11 years old. Recent studies have thrown this practice into question (O Rourke, Pinto). We have reviewed the literature at the Christie and it seems evidence is difficult to distinguish, as numbers of trials and patients in these trials are small. We wish to survey practice, and the desire for a clinical trial, to clarify this question, once and for all. I would be grateful if you could spare a few moments of your time, to answer this questionnaire. Please to Many thanks for your contribution Yours truly Dr C Faivre Finn, Consultant Clinical Oncologist, Christie Hospital Dr C Lee, SpR Clinical Oncology, Christie Hospital 1/ Do you use prophylactic irradiation to intervention sites in Mesothelioma? 2/ How many patients are referred per year? 3/ Dose, fractionation and energy of radiation used? 4/ Do you have a policy regarding the optimal timing of radiation following intervention in your centre, and if so, what is it? 5/ Desire for a trial, and if so, what design and what questions would you like addressed? (tick as many of the following as you wish and any other suggestions) - XRT prophylactically (21Gy/3# within 15 days) vs no prophylactic XRT - XRT prophylactically (21Gy/3# within 15 days) vs XRT prophylactically (10Gy/1#) vs no prophylactic XRT - 21Gy in 3# (12-15MeV) (Boutin, Low, O Rourke,West) vs 10Gy in 1# (Dutch, Belgian, Australian) - other suggestions 5

6 3 rd MESOTHELIOMA UK Patient and Carer Day 2008 This event is kindly supported by a grant from June Hancock Mesothelioma Research Fund Saturday 4 October 2008 The Queen s Hotel, Leeds The objectives for the day are to give:- Mesothelioma patients and carers the chance to meet and share experiences with others affected by the disease Up-to-date, unbiased information on the following:- Current Treatment Options Minimising Symptoms Benefits Asbestos Information Patient experience Psychological and Emotional Wellbeing Mesothelioma patients and carers the chance to raise issues and ask questions For registration details please contact Mesothelioma UK (details below) or alternatively ask your local specialist nurse or Asbestos Support Group. Mesothelioma UK National Macmillan Mesothelioma Resource Centre Helpline: Fax: Website: 6

7 FORTHCOMING EVENTS Lung Cancer and Mesothelioma Facing the Challenge! 13 th May 2008 Venue: Kent & Medway NHS Trust David Salomans House, Broomhill Road, Southborough, Royal Tunbridge Wells Contact Frances McKay on or Caroline Williams on Americal Society of Clinical Oncology Annual Meeting 30 th May - 3 rd June 2008 Venue: Chicago, USA Website: International Symposium on Malignant Mesothelioma th - 28 th June 2008 Venue: Washington DC, USA Website: marf.org/events/symposium/sym.html International Lung Cancer Conference Liverpool 9 th -12 th July 2008 Venue: Arena and Convention Centre, Liverpool Website: 2nd Asian Pacific Conference: Perspectives in Lung Cancer 1 st - 2nd August 2008 Venue: Sapporo, Japan Website: 7

8 ESSO 2008: 14th Congress of the European Society of Surgical Oncology 10 th -13 th September 2008 Venue: Hague, Netherlands Website: European Society for Therapeutic Radiology and Oncology (ESTRO) 14 th -18 th September 2008 Venue: Goteborg, Sweden Website: 33rd European Society for Medical Oncology (ESMO) Congress 12 th -16 th September 2008 Venue: Stockholm, Sweden Website: European Society for Therapeutic Radiology and Oncology (ESTRO) 14 th -18 th September 2008 Venue: Goteborg, Sweden Website: The BTOG Small Cell Lung Cancer (SCLC) Study Day th September 2008 Venue: Education Centre, Christie Hospital, Manchester Website: 8

9 The 9 th International Conference of the International Mesothelioma Interest Group 25 th - 27 th September 2008 Venue: Amsterdam Website: European Respiratory Society Annual Congress 4 th - 8 th October 2008 Venue: Berlin, Germany Website: dev.ersnet.org/412-welcome-address.htm National Cancer Research Institute Cancer Conference 5 th - 8 th October 2008 Venue: Birmingham Website: If you have any news you would like included in the next Bulletin, please forward it to Mesothelioma UK. Yours faithfully Liz Darlison Liz Darlison Mesothelioma UK 9

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