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NEWSLETTER NOTTINGHAM PROSTATE No. 57 February 2015 CANCER SUPPORT GROUP Welcome to the Newsletter of the Nottingham Prostate Cancer Support Group (compiled by Mark Petrovic) The February 2015 edition includes the following topics:- EVENTS FOR 2015 PCUK NEWS LIVING WITH AND BEYOND PROSTATE CANCER INSTITUTE OF CANCER RESEARCH email [email protected] Dates for 2015 12th February 2015 – Brief AGM followed by Question and answer to a panel consisting of Leanne Alder (Oncology Research Assistant), Short Talks by Ellie Robinson & Kath Lakhani (both Nurse Specialists), and Kathy Humberstone (Continence Nurse) 9th April 2015 – Colin Williamson - Response Support Officer (Mental Health) Nottingham Community Housing Association (confirmed) 11th June – Dr Alan Barlow – GP who will give a talk on his own experience of prostate cancer (TBC) 13th August – Dr Bazo – Erectile Dysfunction (confirmed) 10th September – Annual Dinner at Dibleys 8th October – Tom Walton – Training Video of Prostatectomy – (confirmed) 10th December – Xmas Fuddle – An informal buffet and drink at our annual Xmas get together. Everybody welcome – especially partners and carers. Any ideas for future topics, other suggestions, or feedback are most welcome. PCUK: Prostate cancer drug enzalutamide licensed for use before chemotherapy – but what does this mean for men? On December 8th the European Medicines Agency (EMA) licensed enzalutamide, a lifeextending cancer drug, for men with advanced prostate cancer that is no longer responding to hormone therapy, and who haven’t yet had chemotherapy. To read the full article press Ctrl+Click on the following link:http://prostatecanceruk.org/news/2014/12/enzalutamide-licensed-for-use-beforechemotherapy-%E2%80%93-but-what-does-this-mean-formen?utm_source=Progress+email+newsletter&utm_campaign=bb836bc60eDecember_2014_Progress_email_newsletter12_16_2014&utm_medium=email&utm_term =0_74c33d3810-bb836bc60e-236714937 PCUK: New NICE decision recommends radium-223, but only after chemotherapy The National Institute for Health and Care Excellence (NICE) has just released its second draft decision on radium-223. This time, they do recommend it be made available on the NHS for men with advanced prostate cancer that no longer responds to hormone therapy and has spread to the bones. But they only recommend it for these men if they’ve already been treated with chemotherapy. To read the full article press Ctrl+Click on the following link:http://prostatecanceruk.org/news/2014/12/new-nice-decision-recommends-radium-223-but-onlyafter-chemotherapy?utm_source=Progress+email+newsletter&utm_campaign=bb836bc60eDecember_2014_Progress_email_newsletter12_16_2014&utm_medium=email&utm_term=0_74c3 3d3810-bb836bc60e-236714937 PCUK: Prostate cancer risk factors and causes Could I have prevented prostate cancer? Why did my prostate cancer develop? Could I have done something to prevent it? To read the full article press Ctrl+Click on the following link:http://prostatecanceruk.org/research/your-questions-about-prostate-cancer-research/prostatecancer-risk-factors-andcauses?utm_source=Progress+email+newsletter&utm_campaign=bb836bc60eDecember_2014_Progress_email_newsletter12_16_2014&utm_medium=email&utm_term=0_74c3 3d3810-bb836bc60e-236714937 PCUK: Could a small step for fourteen experts become a giant leap for Men United? Blog by CEO Owen Sharp I watched the new Star Wars trailer the other day and it got me thinking that science fiction is getting ever closer to reality. Maybe not Wookies or light sabres (much to every little boy’s – or even grown man’s – disappointment). But back when Star Wars was first released, who could have imagined that today NASA would be getting ready to send people to Mars in the next 15 years or so? To read the full article press Ctrl+Click on the following link:http://prostatecanceruk.org/about-us/news-and-views/2014/12/could-a-small-step-forfourteen-experts-become-a-giant-leap-for-menunited?utm_source=Progress+email+newsletter&utm_campaign=bb836bc60eDecember_2014_Progress_email_newsletter12_16_2014&utm_medium=email&utm_term =0_74c33d3810-bb836bc60e-236714937 Update from Stewart Robinson, Living with and Beyond Prostate Cancer I am half way through a 6 week course at Maggie’s, Living with and beyond Prostate cancer. The course facilitators are Ellie Robinson and Tina Johnson, Maggie’s counselling psychologist. This is the first time that the course has been run at Maggie’s. Each week has a different focus and there is the opportunity also to experience different forms of physical therapy. Week 1 Fatigue and managing symptoms Week 2 Continence issues. Tai Chi Week 3 Understanding the symptoms and side effects of hormonal treatment. Gentle physical exercise Week 4 Problems with sexual functioning and impact on relationships. Yoga for men Week 5 The real health value of activity. Simple circuit work Week 6 Finding on-going support & keeping up momentum Reading the list it might seem that Tai Chi is recommended for continence issues and physical exercise for hormonal treatment. Not so, the complementary therapies will help different men at different stages of their treatment and what becomes obvious in the course with 10 delegates, mostly newly diagnosed is that similar treatments affect different men in different ways and there is no one treatment suitable for all, nor are the side effects best handled by all in the same way. The course has 3 more weeks to run and I think that further courses are planned. Stewart. You can also say that we now have 5 men well on course for the Buddying Programme at diagnosis clinics. The Institute of Cancer Research: Professor Johann de Bono recently led phase III trials for the prostate cancer drugs abiraterone and cabazitaxel, and is currently evaluating more than 20 others. He has served on the ESMO board of directors and the NCRI Prostate Cancer Clinical Studies Group. Team: Medicine (de Bono) Drug Development Unit Team: Prostate Cancer Professor Johann de Bono is the Director of the Drug Development Unit at the Institute of Cancer Research and The Royal Marsden hospital. Professor de Bono leads the Prostate Cancer Team at the ICR, and specialises in developing new molecular targeted therapies to improve treatment for prostate cancer patients. He has been involved in developing more than 100 potential new drugs over the past decade, several of which are now available to patients, and is currently evaluating more than 20 drugs in early clinical trials. He recently led the pivotal Phase III trials for the prostate cancer drugs abiraterone and cabazitaxel, which both showed an overall survival benefit to advanced, castration resistant, prostate cancer patients. To read the full article press Ctrl+Click on the following link:http://www.icr.ac.uk/our-research/researchers-and-teams/professor-johann-de-bono Prostate cancer: entering a golden age of research This year in the UK, more than 40,000 men will find out they have prostate cancer, and the disease will claim the lives of more than 10,000. Prostate cancer is usually treated with radiation or an operation that removes the prostate gland, followed by drugs that suppress the hormone testosterone, which can stimulate the growth of prostate tumours. But in many men, the disease eventually spreads and reaches a point where hormone therapy no longer keeps it in check. Most of the deaths from prostate cancer occur when the disease has spread to the bone. To read the full article press Ctrl+Click on the following link:- http://www.icr.ac.uk/news-features/latest-features/prostate-cancer-entering-the-golden-ageof-research Cancer drug improves quality of life in men with incurable prostate cancer The prostate cancer drug enzalutamide improves the quality of life of patients with advanced, incurable prostate cancer, as well as improving survival, a new study published in The Lancet Oncology shows. The study, of almost 900 men taking part in a major clinical trial of enzalutamide, looked specifically at men’s experience of pain in advanced stages of prostate cancer. In advanced disease, cancer cells spread to bone, causing often severe pain and fractures. To read the full article press Ctrl+Click on the following link:http://www.icr.ac.uk/news-archive/cancer-drug-improves-quality-of-life-in-men-withincurable-prostate-cancer RESPONSIBILITIES OF EACH STEERING COMMITTEE MEMBER Stewart Robinson Chairman. Also lead contact and co-ordinator of speakers and outside organisations Chris Griffin 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 and steering group secretary Mark Petrovic Newsletter Writer and Website Editor 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 Chris Griffin 0115 8450291 John Onion 0115 9231861 Stewart Robinson 0115 9226782 Mark Petrovic 0115 9430787 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.