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  1. MOVEMBER funding will assist Professor Hofman to continue his ground breaking research into Prostate Cancer treatments using Lutetium177 in conjunction with a number of other new compounds. Please support this work - its for our benefit. Click this link https://tinyurl.com/y42kk887 to contribute. Every little bit helps - this is an opportunity for you to show your support for the research being done by Prof Michael Hofman at Peter Mac. Tax deductible receipt issued when you make your contribution or emailed to you by movember. Cheers Barree
  2. MOVEMBER funding will assist Professor Hofman to continue research into Prostate Cancer treatment with Lutetium177. Click https://tinyurl.com/y42kk887 to contribute.Every little bit helps - this is an opportunity to show your support. Tax deductible recieipt - issued when you make your contribution or emailed to you.
  3. Barree

    Movember is coming

    Movember is coming Donate As with most of the newer Prostate Cancer treatments, it’s disappointing that we don't have more trials open to patients with Advanced Metastatic Prostate Cancer. Men with Prostate Cancer die earlier than women with breast cancer but in Australia women's health gets four times more funding……..Why ? Fellas I'm afraid we are a slack lot and suffering the consequences of own inability to stir ourselves into action - just compare what the ladies are doing to promote Breast Cancer research – for comparison just look at the Glen McGrath Foundation at the cricket, the whole oval is bathed in pink - it’s an absolute credit to their organisation, they are to be commended for their accomplishments. What are we doing ? Why don't we see the MCG and other football stadiums bathed in prostate cancer blue - why aren't we pushing the NRL and AFL to get behind new prostate cancer treatments and research into treatments like Lutetium177? Maybe it’s time for us all to become more proactive and start looking for - and lobbing for - more support from our sports administrators and politicians. It's up to us. Lets start talking to our clubs and our local politicians about supporting Prostate cancer research. We can do it if we try - we all have smart phones, lets get smart and start using them to talk to our politicians and sporting groups. It’s up to each and every one of us - not somebody else to start pushing/raising more funds for Prostate Cancer trials - if we want better outcomes we need to take a good hard look at ourselves and start to work as hard as the ladies do when it comes to raising funds for breast cancer. Movember is coming - for a start let’s get behind this campaign and help them to raise more funds for Prostate cancer research.. Lets push to get Lutetium up and running so more of our members can benefit Barree
  4. Agenda Friday 28 July 2017 You must dial in - we do NOT dial you. Landline - Anywhere in Australia - 25 cents Phone numbers only in email. If this is a problem, contact Jim. Apologies From Alan Barlee visiting family in Europe. Late starters Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in - probably later, perhaps right now if that suits. Special expert guest speaker - Paul Villanti Paul is an Executive Director of the Movember Foundation - famous throughout the world for its support for men's health issues, and for its key fundraising activity - growing a moustache each November. Paul leads the Movember Programs, and will discuss with us existing programs in prostate cancer, and future focus on advanced prostate cancer. See Movember's prostate cancer program here:https://au.movember.com/programs/prostate-cancer This will be followed by a roundtable - new stories, updates, questions Here we have members tell us their stories, or update us with new details, or ask questions. Any man who wishes is welcome to contribute here. Formal end The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat. Informal chat Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say. Disclaimer This Community does not give medical advice. No members are authorised to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment. Time 9:30am - 11:00am Eastern Standard Time (Queensland) The formal phone-in meeting ends after 90 minutes. The lines are kept open for up to an hour after that for members to informally chat. Daylight savings times Brisbane 9:30am Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am Perth 7:30am Winter times Brisbane 9:30am Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am Perth 7:30am Daylight saving ends first Sunday in April Daylight saving starts first Sunday in October Mobile phone warning The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Group or with PCFA. They are between you and your phone provider (Optus, Telstra, Virgin, Vodafone, etc). If you dial one of the capital city numbers given above from a mobile phone, the cost to you will be the cost on your mobile phone plan. If your plan gives you free, or low cost local calls, and you are in one of these cities, it should be free, or a local call. If your plan gives you free, or local cost national calls that should work too. Be sure - call your provider, give the number you might be calling, and check the cost for you to call that number. Speaking time We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond. Special Guest Speakers are invited to speak for 10-15 minutes, then field questions. Guidelines No noise House - radio, TV, computer, pets, other phones, conversation Yourself - mute button, or mouthpiece away from mouth Phone - call waiting off (#43#), Mute button or hang up to leave the room. No mute button? ##4 to mute, ##5 to unmute. Cordless phone - don't carry, put on folded handkerchief to limit reverberation Other calls - Please do NOT use call waiting or another line on the same phone to take another call - members around Australia are left listening to your 'hold' music until you return. Speaker phone Please do NOT use a speaker phone, unless you are very good at keeping it Mute, and at lifting and using the hand piece when you wish to join in the conversation. Mobile phone You will need enough charge for the length of the call, or take the call with your charger plugged in. Speaking Speak clearly into mouthpiece in ordinary voice. Say who you are when signing in, and each time you speak. Listen for the gavel. The Chair may need to interrupt. It's a meeting of 20 people, not a simple phone conversation. If you are not one of the two people in the particular conversation at the time, keep your mute button down and let others contribute. Help the secretary by later emailing details for the minutes. Restarting You may hang up and sign in again as many times as necessary. Sometimes we may have to restart the meeting - dial in again. With everyone calling at once you may need to try more than once. Future phone-in support group meetings Fourth Friday of each month, except: January (one week late for Australia Day), March (one week early for Easter), and December (one week early for Christmas) Phone-in support group meeting dates 2017 July 28 August 25 September 22 (not the last Friday) October 27 November 24 December 15 (one week early, not the fourth Friday) Changes or questions If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com. This message has been send to you because you are a member of the Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
  5. Background 2007 Cancer Australia funded a “Pilot of a population ‐ based prostate cancer clinical registry”. 2009 The Victorian Prostate Cancer Clinical Registry established. 2013. Steps to introduce a national Australian registry. 2014 New Zealand also expressed interest in contributing to this initiative. 2017 Reporting of prospective national registry data from Australia and New Zealand intended to start. In the meantime, data from two established registries in South Australia and Victoria are providing early output. Movember has introduced a number of international registry initiatives which either replicate, or draw heavily on, the work of the Victorian Prostate Cancer Clinical Registry. What are the benefits of a Registry of Clinical Outcomes? Men are able to make better informed decisions about treatment options by having accurate information available to them about the outcome of different treatments. Feedback to specialists and hospitals on their performance leads to quality improvements. The feedback enables them to compare their results with other providers and stimulates “competition” to improve outcomes. Some ways that the data from the Registry has been used in Victoria Data from the Victorian Prostate Cancer Clinical Registry showed that men diagnosed with prostate cancer in Gippsland (a country region of Victoria) had a poorer 5-year survival rate than the rest of Victoria. This has resulted in research to identify the factors responsible for this poorer outcome and the development of strategies to remedy the problems identified. In some cases individual specialists have been counseled where their treatment outcomes were significantly inferior to those of their peers. About the Registries Click here to read the Prostate Cancer Outcomes Australia Annual Report 2016 and click here to read the Victorian Prostate Cancer Registry Five Year Report. Thanks to our committee member Tony Maxwell for drawing our attention to the Prostate Cancer Outcomes Australia Annual Report 2016. Tony is on the Steering Committee of the NSW Prostate Clinical Cancer Registry (the NSW arm of the Prostate Cancer Outcomes Registry Australia and New Zealand).
  6. Paul Edwards

    Exercise has many benefits

    In today's teleconference the role of exercise in reducing depression was discussed. Researchers are finding that there are many different ways in which exercise affects our bodies. Tony Maxwell, one of our Committee Members is working on a Movember initiative, TrueNTH. TrueNTH has an excellent resource on its website about exercise for men with prostate cancer. Click on this link to read this information. There are a number of pages on the website about exercise. They're well worth a read!
  7. Paul Edwards

    Prostate Cancer Registers

    In yesterday's teleconference the work of Movember in funding prostate cancer initiatives was mentioned. 5 years ago Movember funded the establishment of the Victorian Prostate Cancer Registry. Movember is now funding the establishment of Prostate Cancer Registers in all Australian States and Territories, as well as a number of overseas registry initiatives. I promised that I'd post a copy of the Victorian Prostate Cancer Registry's 5 Year Report. To read it, click on this link. Hopefully this will answer some questions asked in the teleconference about how prostate cancer registers work. "It is only through clinical quality registries...... that we can ever hope to know and understand whether or not care provided to men with prostate cancer is safe, timely, effective, appropriate, and equitable. If we do not measure it, we will never really know." it
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