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  1. Last week
  2. Agenda this Friday 25 May 2018 Some key members will be at the PCFA Community Conversations event in Melbourne. Nevertheless, we will have a Roundtable this Friday You must dial in - we do NOT dial you. Landline - Anywhere in Australia - 25 cents Phone numbers only in email. Problem? Contact Jim Apologies From Victorian members, David Abrahams, Nev Black going to the PCFA Community Conversations event 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. Roundtable - new stories, updates, 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, making 2 meetings in February), and December (one week early for Christmas). Phone-in support group meeting dates 2018 May 25 June 22 (not the last Friday) July 27 August 24 (not the last Friday) September 28 October 26 November 23 (not the last Friday) December 14 (one week early for Christmas) 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 sent to you because you are a member of the Australian Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
  3. Victorian members. Going to the PCFA Community Conversations event this Friday 25 May 2018? Keep an eye out for fellow Advanced Group members. Easiest to spot will be David Abrahams (Toowoomba, Qld) as he is brought forward around lunch time to be honoured with the Max Gardner award for distinguished service. Also in the audience will be executive management committee members Barry Elderfield (Melbourne, Vic), Alan Barlee (Geelong, Vic) and Nev Black (Postmans Ridge, Qld).
  4. Earlier
  5. Thanks Jim - I'm sure I speak for all when I say we appreciate your efforts and the time you put into attending these functions.A job well done! The availability of treatments such as Xofigo and other radio pharmaceuticals such as Lutetium177 to a large degree is going to rely on our ability as a group to encourage politicians to support our efforts to get the problems associated with PBS listing and the accompanying legislation needed for handling radio active treatments sorted out and this wont happen without incessant lobbing by our committee and members. If we want these treatments we will have to learn to be an a more effective lobby group - and all do our bit to get our politicians to become more aware of our plight. Lets get to it fellas. Barree
  6. In front of a sign reading "Finding a pathway for radiation pharma, Dr Andrew Laming MP, member for Bowman, Peter Duffy, PCFA Queensland Manager, Professor Judith Clements, PCFA National Board member, Prime Minister Malcolm Turnbull, MP, and Jim Marshall, Convenor of the Australian Advanced Prostate Cancer Support Group. New legislation needs to be passed so a new class of radioactive drugs can be supplied on the PBS. Evidence to date supports one drug in this class - Xofigo (Radium-223). The legislation will allow other drugs of this kind to be added when supported by evidence. Supplying radioactive drugs through the PBS will be highly complex, and there was a long delay before a way forward could be found. That process is proceeding. Jim told the Prime Minister that praise rested with Dr Laming, who was able to combine his professional medical knowledge with his knowledge of legislation to propose a way forward to the Health Minister. Members will be pleased to hear that the Prime Minister was well on top of the issue, and said: "We need to get this through by the end of the year". PS: Dr Laming happens to be holding a PCFA Advanced Prostate Cancer pack. Members Jim Marshall and Tony Maxwell contributed to this pack a few years ago. Downloadable PDFs of the pack pamphlets are available on our site at: http://www.jimjimjimjim.com/advanced-pack-pdfs.html
  7. Fantastic effort Jim and the APCF committee. There is light and the end of the tunnel! Thanks again for all your hard campaigning.
  8. whatmeworry1941

    Fluid retention following docitaxel

    My Dad takes furosemide to control fluid build up, but that's because he has heart issues. You might want to get your heart, kidneys, liver etc also checked out. Plus ask about diet. Their can be many causes for your fluid retention.
  9. Good One Jim, Congratulations to you, the APCF Committee and all members who assisted in the lobbying. The proof will be in the pudding and let us hope it does not become a political football. Unlikely I know But! Yours Aye David
  10. Thanks Jim and all those who work behind the scene to make these things happen
  11. Today Convenor Jim Marshall had a short meeting with the Prime Minister, Malcolm Turnbull, MP. Jim was there as part of a PCFA delegation about supplying radiopharmaceutical drugs on the PBS. Putting these drugs on the PBS has been a technical problem because, unlike ordinary pharmacy drugs, these are radioactive. Nowhere could be found to approve these drugs under the existing Health Act, so the government will have to pass new legislation to make it happen. The Prime Minister, in informal conversation today with Jim, said that the government hoped to have the legislation passed so that the drug Xofigo (Radium-223) can be in the hands of men who need it by the end of the year. For those who have joined with us in this long campaign, it looks like the end is finally in sight. PCFA: Prostate Cancer Foundation of Australia PBS: Pharmaceutical Benefits Scheme
  12. Chalkie

    Fluid retention following docitaxel

    Hi Johnno I didn't have any issue with fluid retention when I was having chemo last year but did in the past when I was on "pledill" or something like that which to control blood pressure. I had been on it for about 4 or 5 years before this happened. The GP said it was "phelodopine" - again the spelling of this is a guess. Check with your GP if you are on any other meds as the odema may be unrelated to the chemo.
  13. Thanks Barry, and to all those who have helped get us this far. Let's hope tomorrow's meeting with the PM will speed things along.
  14. I would like to hear from anyone who experienced fluid retention as a side effect of their chemotherapy treatment. I had 19 lymph nodes removed from the right side of my groin during the prostatectomy surgery and unfortunately developed lymphedema soon after. That was in 2013 and I've been able to manage the swelling etc quite well with exercise and compression stockings worn everyday. Unfortunately around about the third cycle of docitaxel I started to experience an increase in swelling as well as fibrosis and pain. I'm currently using hydrotherapy and grade 3 full length stockings on my leg as well as a pump on the leg and manual drainage, unfortunately I'm not seeing any great results. My last chemo infusion was around 4 weeks ago, so I've finished with the docitaxel and hoping that the effects will be reversible over time. If anyone has experienced similar side effects and how they coped I would like to hear from them.
  15. Well done Jim. The article in today's Financial Review is great and will hopefully have the desired impact on the PM and his Ministers -it should. When one considers the amount of work you,the group and members generally have put into this submission we deserve to get Xofigo approved and available. Its time the Government took notice of the plight of Advanced Prostate Cancer sufferers and nudged the PBAC to get this not only approved but approved in a manner that permits it to be used after the super hormones not instead . The Fin Review article is up on Facebook - all we need now for it to get some legs - is for members on Facebook to hit there likes and share buttons. Cheers, Barree
  16. Great article, Jim. We have a good ally in AFR's Jill Margo. Good luck with the PM. (I wonder if the Minister for Health will be accompanying him - or will at least be similarly briefed). Cheers, Alan
  17. In this morning's Financial Review, Jill Margo features our convenor, Jim Marshall, and our battle to have Xofigo (Radium-223) available to men who need it. The article was prompted by an event to be held tomorrow where Jim has been invited by the Prostate Cancer Foundation of Australia (PCFA) as their patient representative in a short opportunity to meet Prime Minister Malcolm Turnbull. In the past four years, Jim and our executive team have worked closely with the PCFA on this campaign. Hundreds of members of our group, and of other PCFA affiliated groups, have contributed. But final approval for PBS listing depends upon the government changing a part of the Health Act. Tomorrow, Jim, PCFA, and Bayer hope to be able to encourage the PM to personally take action to make this happen soon. The story can be found in today's Financial Review. An online version can be found here: http://www.afr.com/lifestyle/health/mens-health/hoping-and-praying-prime-minister-will-promise-to-deliver-on-prostate-cancer-20180514-h102i4 or here: http://tinyurl.com/ybn2xzb2
  18. I read the article in Canberra Times, its a bit sensationalised, ie, wrongly reported by some young jerk, so common now. No mention of fact you can buy Lu fix now, you don't have to wait over 2 to 4 more years to get it from P'Mac. They didn't mention many details, or pay more attention to what Barry might have said about it all. And they did not mention Ra223 for bone mets, so all in all, another very poor piece of crummy journalism, IMHO. One does not sprout tumours, they just form within organs and bones. Its cancer and not growing potatoes, OK. I expect respect, but young ppl often have an allergy to giving it. Patrick Turner.
  19. I believe one of our members made the papers. Make you share this article on your social media. https://www.smh.com.au/national/from-lucas-heights-to-petermac-new-prostate-therapy-is-a-game-changer-20180508-p4ze1f.html
  20. Cam

    43 with stage 4 prostate cancer

    Hi Maffy, Thanks for your support. I hope you are doing well. I just keep on battling through this incurable disease hoping I last long enough for it to be curable! cam
  21. Maffy

    43 with stage 4 prostate cancer

    Hi Cam, Good to hear from you. I often think of you and pray for your situation. I sympathise with your frustrations at this disease. As a young man myself (now 48; had my prostate and sex nerves removed when I was 46; had my 6 rounds of chemo finished in November 2017), it is shocking to us, to wake up one day, when we still think we're in our prime, and found that the reality of death is no longer a far away call. In my case, it has helped to take on a thankful mentality. I must admit that I'm a Christian, but even if I wasn't, I can see that those people who are vying for "positive" attitudes in life have a point - what we say becomes who we are. So cheer up mate. I'm extremely thankful that there are treatments for our Prostate cancer here in Australia. If I were to remain in my own country in the Pacific, I could have been dead by now because there are no treatments at all. The Bible's philosopher Solomon Ben-David (c.980 BC) says, "In the day of prosperity be joyful, and in the day of adversity consider: God has made the one as well as the other, so that man may not find out anything that will be after him." (Ecclesiastes 7:14). Till next time, Maffy
  22. pauldhodson

    Journey Update- David Abrahams

    David, Thanks for the update. I have had lots of urinary issues lately and my Oncologist thinks it may be Prostatitis (in addition to MCRPC). Have you considered getting Lu177 privately? I believe it cost $9,600/ infusion and requires 2 to 6 infusions. I'm in the same boat as you (at age 51) I'm going through the pre-trial assessments for Lu177 but as my PSA hasn't been over 3.6 μg/L I'm unlikely to be accepted (I'm also responding well top Xtandi). Cheers Paul.
  23. Cam

    43 with stage 4 prostate cancer

    Hey Paul, yep, this was a big psychological decision but I'm sticking with the approach that I've taken since first diagnosis: throw the kitchen sink at PCa and hopefully hold it back for many years. If you consider the orchiectomy and need someone to talk to, you know where to find me. Cam
  24. Cam

    43 with stage 4 prostate cancer

    Hi Barree, I'm going to try very hard not to think about more treatment for a few weeks (having a quick break in Fiji next week), then my next blood tests are on June 7. Hoping both PSA (which was up from 0.014 to 0.034 over a six week period at last test prior to orchiectomy) and testosterone levels are down, otherwise I suppose I'll be entering the next phase of this disease. Hope you're going well? Cam
  25. pauldhodson

    43 with stage 4 prostate cancer

    Hey Cam, Thanks for the update. You're a courageous man. I hope this decision pays off for you. I have had persistently high blood pressure from my Zoladex implants, which is a worry, so I've considered going down the same path. Never give in, you're a young guy with lots to live for. We're with you all the way. Cheers Paul.
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