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  2. You thought the Australian Advanced Prostate Cancer Support Group was finished. That is correct! It has finished. This will be the final email. A new group, with the surprisingly similar title Advanced Prostate Cancer Support Group has started. Set up by PCFA and a few former members of the defunct group, it has the more modest aim of just holding a monthly phone-in meeting. See the picture below. If you are after online support, go to JimJimJimJim.com and click on Support. If you have any problems, call Nev Black on 0419 673 096
  3. Extremely well done Jim. 11 years is quite an effort and very much appreciated by all who sort reliable advise. I was glad to be there at the beginning to assist in my small way but as you know other health issues got my attention. Your computer skills were also put to excellent use which got the attention of not just PCFA top brass but posts and especially YouTube would have been accessed from all over the world. A remarkable feat. Euan
  4. Well done Jim – you’ve put in a lot of hard work and done a great service to we PC patients. All the very best. from: Tom Rae aka ‘Fergie’
  5. Janis Kinne

    We are moving on

    A heatfelt thanks to you Jim together with your executive team. The monthly phone calls have been a great source of Australian relevant information for we advanced PCa travellers. A unique group with a unique collective knowledge that will be very difficult to replicate. I have learned a lot from you guys and and have enjoyed our local get togethers. Very sad that it has all come to an end. A very sincere thankyou for your team's collective effort to provide a forum not available with the same Australian focus elsewhere. All the best for the future to all involved.
  6. Many thanks to Jim and the Team for the fantastic work that you have done over the years. You have really made a difference to the lives of many men and their carers who are touch by Prostate Cancer. take a well deserved rest. Adieu, brother and online friend.
  7. Thanks Jim for the terrific contribution you have made to improving our understanding of prostate cancer and how to deal with it. Very best wishes for the future. Bruce
  8. Patrick Turner

    We are moving on

    Thanks for the group Jim, its a sad day. I spend a lot of time at HealthUnlocked which is based in US, and there are more members who seem to make more posts so there's a bigger flow of useful info. However, in some ways much treatment men want to know about is more readily available here in Australia. But I have learned quite a lot here. By-bye everyone, it was nice to meet you all. Patrick Turner.
  9. Kevin Martin

    We are moving on

    To Jim and the Executive committee, Thanks to all for a job well done. It has been a very informative and helpful site to visit over the years. A bit sad to see it go but all good things eventually come to an end. Thanks again and all the best to everyone in their endeavours to fight this mongrel problem that we all have. All the best to everyone. Kevin Martin
  10. I would like to second Skipper,s comments , I could not have said my personal thanks any better and wish Jim and Wendy all the best in the future and thank you for your exceptional efforts , they have been a comfort to so many men over many years , and Jim , Your message re the personal rewards and a deep sense of purpose that comes from being part of a group and organisation that helps others . John Daven
  11. WOW! Jim, you've always given us much to think about, but never more so than today. JIMJIMJIMJIM has provided a fantastic service and I'd hope to meet you when we could agree on just a few more details. I really wish I'd known of your site earlier in my journey. Thank you so much. Peter
  12. To Jim and committee: I would just like to express my deepest appreciation for all the work you have done I personally have read and learned much about this disease and found comfort in that knowledge When the medical profession left me wanting, it was the JimJimJimJim forum I turned to for support And to socialize with a group of men who understand our mental state has always been a plus I could go on about how Jim would not accept a membership fee to our elite "club" but there would still be much unspoken Suffice to say you have provided a wonderful service which
  13. Jim Marshall (not a doctor) said ... In short The Australian Advanced Prostate Cancer Support Group is ending. Members should join one or more of PCFA, HealthUnlocked, or Facebook. Details are below, links at the end of this post. Volunteers are available to help you if you need that. The forums will remain online for some months in archive (read-only) format for members to copy topics to their own computers, perhaps to post their stories to their new service. More detail When I was first diagnosed with a large, aggressive, locally advanced prostate cancer there was a great
  14. Patrick Turner

    My Cancer Journey So Far

    Hi Dave, the prostate cancer nurse at Canberra Hospital said she knows of men who have Pca with Psa 10 that remain unchanged for a long time. In 2 weeks since the nurse told me that, presumably to stop me worrying, Psa went to 14. It was 0.32 last November, and rate of doubling is FAST, so action is needed, and fortunately, I'll probably begin more Lu177 treatment in July, not far away, and with anything else docs think might help. I have countless bone mets. Stable but seemingly high Psa is not unknown, so I'd agree your case is not weird. But for most of us with advanced Pc
  15. DaveK1200

    My Cancer Journey So Far

    Hi Alan and Patrick, (and everyone else too.) Thank you for your good wishes. Alan wrote .. “You would have to be one of our really weird cases - in a good way!” Thanks Alan, however I believe there would be many others around the world doing similar to what I’m doing. Here’s a PUB MED abstract about a patient much worse off than me who appears to have done a lot better than expected. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5624684/ Prior to my phone consult I decided not to ask my oncologist how his discussion with the mul
  16. Thanks for posting this Nev. Interesting first look (for me) at the initial observations from the TheraP trial. I am on standard cabazitaxel treatment, and did not qualify for this trial before they stopped recruiting. I was on Xtandi (enzalutamide) last winter and my PSA was rising, but it was not high enough.
  17. Thanks Guys, A great talk by Mark Moyad. Fantastic to see that the need for dietary intervention is spreading. In my case, a relapse almost immediately following surgery necessitated salvage EBRT. A second relapse, just a few months later, really put the cat among the pigeons and inspired me to take dietary intervention seriously. I was already on a "really healthy" mediterranean style diet, but it wasn't enough! I needed a total revision of what I believed to be healthy. Last January I passed my 5-year mark with undetectable PSA. The Red Cross even allow me to donate b
  18. If you weren't up in the wee small hours this morning, the Men's Health seminar with Dr Mark Moyad, it's now on YouTube. Long, but lots of good stuff (much after the interview with the sports guy). Starting at the one hour mark - after the sports guy: Including the sports guy about his treatment:
  19. alanbarlee

    AMG160 -new phase 1 trial using immunotherapy.

    That's excellent news, Tony. I had a similar-sounding problem with my legs a year ago - caused by a shifting lumbar vertebra that was fixed with surgery - so I can feel your joy! May the gods keep smiling upon you! Alan
  20. Really good to hear you are doing well, Tony. We have couple of gents looking at similar trials Stateside. Stay strong ..... and if you feel up to it, please join one of our US advanced PCa calls to share the experience withour men here - they would love to hear. You'll find all the info to join online or by phone with a regular Oz number (not toll free) at https://ancan.org/prostate-cancer/
  21. Watch "PCFA Funded trial: ProPSMA Pet/CT (Prof Declan Murphy & Prof Michael Hofman)." on YouTube https://youtu.be/13h1T2uiYFA
  22. Tony Loves

    AMG160 -new phase 1 trial using immunotherapy.

    Hi guys its 19th June & watching sun come up art,Chris O Brien Life house after three treatments of AMG160. So far im very happy with my progress. I'm walking much,much better and even find showering without a comod chair not to much of a hassle. When I started treatment I was having difficulty walking more than 150metres without pain & a shower without a chair was almost near impossible. I'm noticing the improvements without a doctor telling me & I'm not reaching for my cane like a safety blanket. I'm now able to walk without cane although I do shuffle a l
  23. Patrick Turner

    My Cancer Journey So Far

    I think you are in a lucky position where an oncologist isn't worried that your Pca threatens your life any time soon. As time goes by, an increasing number of treatments are accumulating to make you last longer if your Pca activity does become cause for concern. Perhaps I might provide everyone with my present Pca progress to illustrate a contrast of what may happen. In late 2018, after ADT and chemo failed, I began Lu177 in November 2018 with Psa 25, and countless bone and soft mets. By August 2019, when a second followup PsMa scan was done, the soft tissue mets were all gone
  24. alanbarlee

    My Cancer Journey So Far

    G'day again Dave, You would have to be one of our really weird cases - in a good way! I'd be a little doubtful that your PSA plateau and variations is 'testing error'. You clearly have prostate cancer (Gleason 4 +4) that has metastasised - but for some reason, unrelated to the usual treatments, which you haven't really had, the mets have become dormant, as the 'stationary' PSA indicates. It would be interesting to know what your oncologist's conversation with the multi-disciplinary team came up with. You might want to consider enrolling in an exceptional responders trial (I
  25. DaveK1200

    My Cancer Journey So Far

    Hi everyone, I had a phone consult with my Oncologist this week. He’s doing phone consults whenever possible because of Covid 19. It was really strange having a phone consult instead of our usual face to face meeting. He said my bloods were generally ok, but my Vitamin D levels were a bit low. I joked that my wife is always trying to get me to clean the pool with my shirt off and I’m not sure if that’s so I can get more Vitamin D or if she just likes seeing me that way. Anyway ... I agreed to get out in the sun a bit more without overdoing it. My Oncologist also
  26. Patrick, I am sorry to hear that your PSA has climbed to that level. Best wishes for your future treatment at Theranostics Australia. Have had lots of good reports about many wonderful specialist prostate cancer nurses. Pleased to hear that has also been the case in Canberra.
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