Oxfordshire Prostate Cancer Support Group
Newsletter
12th. May 2014
NEWS
Firstly, some excellent news from PCUK, working together with Tackle Prostate Cancer. OPCSG members will be aware that the government’s advisory body NICE was planning to withhold the end of life treatment enzalutamide from patients who had already been treated with abiraterone. This unfair decision has been reversed, not least because of the efforts of both these bodies and OPCSG members who signed petitions. PCUK made the following announcement on 9 May:
“Thanks to the 13,500 of you who stood with us to challenge NICE, we’re thrilled to report that NICE has removed the outright restriction on the use of life-extending drug enzalutamide after treatment with abiraterone, saying there is no clinical reason for it. By coming together as Men United and campaigning with Tackle Prostate Cancer, we made our voices heard.
“This is good news for men with advanced prostate cancer, who have so few treatment options. But NICE’s decision isn’t an outright recommendation, either. We believe men should now have access to enzalutamide even if they’ve already had abiraterone, but we need to make sure. Read the full story and find out how you may be able to help: http://prostatecanceruk.org/challengenice”.
STUDY DAY
Would you like to attend a study day entitled ‘Living with and beyond cancer’? We have received an invitation to all OPCSG members from OUH URO-ONCOLOGY NURSING SERVICE to attend on Wednesday 21 May from 9.30 to 3.30 p.m. at the Golf Club. There are some fascinating topics including diet, exercise, incontinence, ED and psychological support. The invitation and agenda are attached to this Newsletter. If you wish to attend please call the Urology-Oncology Clinical Nurse Specialists on 01865-572374
FUTURE GROUP MEETINGS to be held at Oxford Golf Club from 6.30 p.m. onwards:Monday 2 June: We welcome back two speakers involved in research with prostate cancer patients. Dr Prasanna Sooriakumaran (PS), Senior Clinical Researcher in Robotics & Urology, University of Oxford & Honorary Consultant Urological Surgeon, Oxford University Hospitals NHS Trust, will present his survey idea entitled “Capturing quality of life outcomes in men with prostate cancer: what’s important to the patient rather than the doctor”. He would like to know how many of our members would be interested in participating, and the best way of maintaining access to them.
Professor Eila Watson, Professor of Supportive Cancer Care, Oxford Brookes University, will talk about the research study she is conducting on Quality of life and follow-up care for men with prostate cancer, including an update on initial findings from this study.
Sunday 29 June: 2.30 p.m. - River cruise from Abingdon Bridge with jazz and cream tea at a cost of £15 per person. Many have reserved already. If you have not, here is what you need to do:
1. Reserve a place by emailing me at john@grundybell.demon.co.uk or ring 01865 730110 (till 15 May, after which I shall be away – then contact George as below.)
2. Payment will be due by 31 May. Please send cheques made out to ‘OPCSG’ to George Goldsmith, 2 Ridgeway Court, Wolage Drive, Wantage, OX12 9NP (01235 763486).
Monday 1 September: This meeting will be an open forum and social quiz.
Monday 20 October: (NB Change of date from 13 October) Paul Mayhew-Archer, script writer and comedian, will give an illustrated talk about his life in film, television and radio. Paul has been co-writer of 'The Vicar of Dibley' and is currently writing and filming the forthcoming TV film version of Roald Dahl's ‘Esio Trot’ starring Dustin Hoffman and Judi Dench. Other radio and TV credits include ‘I'm Sorry I haven't a Clue’, ‘Old Harry's game’, ‘Spitting image’, ‘Two Pints of Lager and a Packet of Crisps’, ‘Miranda’ and most recently ‘Mrs Brown's Boys’. This will be a hilarious evening of comic memories and anecdotes.
Saturday 6 December at 7 pm: Skittles evening at the Ferryman's Arms, Bablock Hythe
Volunteers please! As usual OPCSG will be attending many outdoor events over the summer period to raise awareness of prostate cancer. Volunteers are always welcome. It can be a rewarding experience to share personal experience with others and spread the word for men to get checked, while at the same time having an afternoon at an event. Forthcoming dates are:
30 June – Cassington Bike Night
19, 20 July – West Oxon Steam and Vintage Show, Ducklington
10 August – Finmere Show
5 October – Banbury Boat Day
If you can help at any of these events please contact Bob Butler on 01865 881697 or John Goldsmith on 01865 580152.
Keep in touch with news and events on our website, http://www.opcsg.org/homepage, and let us know if you would like copies of our leaflets to give to people or display somewhere where they may be seen.
Kind regards,
John Grundy
Vice Chairman, OPCSG