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NEWSLETTER NOTTINGHAM No. 51 April 2014 PROSTATE CANCER SUPPORT GROUP Welcome to the Newsletter of the Nottingham Prostate Cancer Support Group. The April 2014 edition includes the following topics:AGM Robot Surgery Carers Support Group Inst of Cancer Research (Imaging, Centres of Excellence and Genetic discovery) PCUK Behind the headlines and latest Enzalutamide news Various Donations Message from outgoing Steering Committee member Colin Boulter: As you may know I decided not to stand for re-election to the Steering Group at this AGM after 7 very exciting and enjoyable years. I really did appreciate the kind words, and the gift, during Stewart’s presentation at the AGM. Enid too was extremely surprised – and very grateful – to receive the wonderful arrangement of flowers. Thank you to everybody. I’m fortunate (or not!) to have so many other interests and hobbies that I want to spend more time on, and it’s also appropriate for the Support Group to have new faces and ideas on your Steering Group. I’m really pleased Ray Sylvester has agreed to join the Steering Group, and wish them every success for the future. I think the Support Group has achieved so much over the years – and this year we’re due to celebrate its’ 10th Anniversary! The number of members has grown considerably, and in that time we have seen massive advances in the detection and treatment of PC, especially at the wonderful facility we are so lucky to have at the City NUH. Enid & I will of course continue as members of the Support Group, and still intend to come along to as many meetings as we can, and I look forward as ever to saying Hello to you all. With our best wishes for 2014 and beyond Colin & Enid Boulter Message from Mark Petrovic, Newsletter Writer/Publisher and Website Manager: I would on behalf of the Steering Committee like to thank Colin for all his hard work for the Support Group these last 7 years supported by his lovely wife Enid and wish them both all the very best for the future. Please see photo presentation to Colin in after the donation photos. Also we are very pleased to welcome Ray Sylvester as his replacement on the Steering Committee. Best Wishes Mark Petrovic email [email protected] Dates for 2014 10th April 2014 – Professor Robert Rees - Director of the John van Geest Research Centre, Nottingham Trent University. Also Bridget Leech from Carers UK to give a 15min talk 12th June 2014 – Ellie Robinson - Urology Clinical Nurse Specialist, Nottingham City Hospital 14th August 2014 – Chris Bisset Maggie’s Benefits Advisor 11th September 2014 – Summer Meal at Dibley’s 9th October 2014 – Colin Williamson (tbc) 11th December – Xmas Fuddle Everybody welcome – especially partners and carers. Any ideas for future topics, other suggestions, or feedback are most welcome. General News Part 1 AGM: The 2014 AGM was held at the Support Group meeting on 14 th Feb. The Chairman’s Report was made by Stewart Robinson and briefly, consisted of thanking all those who have contributed to the Support Group over the last year, especially all those who have raised funds for various organisations including Maggie’s where our meetings are held. An overview of the accounts for 2013 provided by Chris Forde our Treasurer read as follows:Opening Balance £3752 Plus Total Income £1186 £4938 Less Total Expenditure of £948 Closing Bal 31/12/13 £3990 All amounts are rounded to the nearest pound Robot Surgery: £2.2m investment in new robot to treat prostate cancer patients at Nottingham City Hospital Men diagnosed with prostate cancer are to benefit from treatment using a new hightech surgical robot which will improve outcomes and recovery times. To read the full article please press Ctrl + Click on the following link:http://www.nuh.nhs.uk/communications-and-media/news/2014/january/%c2%a322minvestment-in-new-robot-to-treat-prostate-cancer-patients/ Carers Support Group: We are looking for carers who are interested in starting a Carers Support Group for partners, relatives, or friends who are looking after someone with prostate cancer. There will be a talk on the subject at the April meeting by Bridget Leech from Carers UK. Institute of Cancer Research: New imaging approach fast tracks drug testing for incurable prostate cancer. Cancer Research UK-funded scientists have developed a new way to test the effectiveness of a drug for prostate cancer that has spread to the bone, which is currently incurable, according to research published in the Journal of the National Cancer Institute. To read the full article please press Ctrl + Click on the following link:http://www.icr.ac.uk/press/press_archive/press_releases_2014/24747.shtml General News Part 2 Institute of Cancer Research: First ever UK Centres of Excellence in prostate cancer research launched by the Movember Foundation in partnership with Prostate Cancer UK. The world-class Movember Centres of Excellence Programme in partnership with Prostate Cancer UK, comprises Belfast-Manchester and the London Consortium, and will see an injection of £10 million over a 5 year period - the largest single investment in to the disease by the partnership to date. To read the full article please press Ctrl + Click on the following link:http://www.icr.ac.uk/press/press_archive/press_releases_2014/24545.shtml Institute of Cancer Research: Discovery may help to explain mystery of ‘missing’ genetic risk. A new study could help to answer an important riddle in our understanding of genetics: why research to look for the genetic causes of common diseases has failed to explain more than a fraction of the heritable risk of developing them. To read the full article please press Ctrl + Click on the following link:http://www.icr.ac.uk/press/press_archive/press_releases_2014/24559.shtml Prostate Cancer UK: Behind the headlines: Cure for prostate cancer available within two years – and with no side effects? It’s just as unlikely as it sounds The Daily Express recently released a story with the headline ‘ Cure for prostate cancer that has NO side-effects could be available on NHS in just TWO years’. This sounds great, but is in fact hugely misleading. While dose-painting radiotherapy, the treatment they’re talking about, could be a promising new addition to the arsenal of available treatments for men with localised prostate cancer, the claims regarding side effects and availability on the NHS have been rather overstated. To read the full article please press Ctrl + Click on the following link:http://prostatecanceruk.org/news/2014/3/behind-the-headlines_dose-paintingradiotherapy Prostate Cancer UK: NICE urged to see sense and remove cruel enzalutamide restrictions. PRESS RELEASE: Today 19 March 2014, the National Institute for Health and Care Excellence (NICE) is holding its final committee meeting to appraise advanced prostate cancer drug enzalutamide for use on the NHS in England and Wales for men who have already had chemotherapy. Since January Prostate Cancer UK has been spearheading a campaign against proposed restrictions in access to the life-extending treatment which have sparked outrage among thousands affected by the disease across the country. To read the full article please press Ctrl + Click on the following link:http://prostatecanceruk.org/news/2014/3/nice-urged-to-see-sense-and-remove-cruelenzalutamide-restrictions Chris Forde presenting a cheque for £1000 to Dr Sundar for Prostate Cancer Research in Oncology on 3rd Feb 2014 Chris Forde and Stewart Robinson presenting a cheque for £500 to Ben Sherwood (Urology) 14th Feb 2014 Chris Forde presenting a cheque for £500 to Professor Graham Pockley, Associate Director at the John van Geest Cancer Research Centre Trent University Campus on 18th Feb 2014. Graham Pockley Associate Director writes… “Nottingham Trent University’s John van Geest Cancer Research Centre is a unique purpose-built, dedicated cancer research facility which is dedicated to improving the early diagnosis and treatment of cancer. State-of-the-art technology platforms are focused on two key areas: To improve the diagnosis and management of prostate cancer To develop effective vaccines and immunotherapies that will significantly improve survival rates and quality of life” “We have identified a modification of the vaccine which we described in the European Journal of Immunology before Christmas which appears to be even more potent. We are now undertaking the pre-clinical studies on this new vaccine and also evaluating two different delivery systems. If the data look promising, then we will hopefully be able (funding permitted) to begin a Phase I clinical trial in 18 months or so.” “We are also currently trying to secure funding for a Phase II trial of the ANDROVAC vaccine which we are working on in collaboration with Athens.” Stewart Robinson performing the leaving presentation for Colin Boulter at the AGM on 14th Feb 2014 RESPONSIBILITIES OF EACH STEERING COMMITTEE MEMBER Stewart Robinson Chairman. Also lead contact and co-ordinator of speakers and outside organisations Robert Oldroyd Group email address, Newsletter circulation by email Ray Sylvester New member recruited to the Steering Committee Chris Forde Treasurer. Also collects members’ car registrations to enable free parking John Onion Establishes contact with other groups Mark Petrovic Newsletter Writer and Website Manager Who we are The Nottingham Prostate Cancer Support Group meets at Maggie’s drop-in centre on the Nottingham City Hospital campus between 7.00 and 9.00pm on the second Thursday of alternate months. A raffle in aid of Group funds is held at each meeting. The Group aims: To provide mutual support to men and their loved ones who are concerned about prostate cancer and its consequences. To receive information about prostate cancer and its treatment. To share experiences of prostate cancer. To raise awareness of prostate cancer. To support fund-raising for research. Prostate Cancer Support Group Steering Committee Chris Forde 01509 820122 Bob Oldroyd 0115 9843448 John Onion 0115 9231861 Stewart Robinson 0115 922 6782 Mark Petrovic 0115 9430787 Ray Sylvester TBA Specialist Nurse Support - Lead Contact - Eleanor Robinson 0115 9691169 ext 54082 Contact us by email at [email protected] “Buddies” – Patient to Patient telephone support A number of our members are available to support newly diagnosed men by sharing experiences over the telephone. Contact any of the Steering Group to find out more.