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  2. 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
  3. 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’
  4. 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.
  5. 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.
  6. 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
  7. 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.
  8. 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
  9. 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
  10. 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
  11. 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 I doubt will be matched in the foreseeable future Thank you seems too cheap but there is little else to say - God bless you all Best wishes for the future Noel
  12. 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 need for men and their partners to be able to help each other cope with advanced prostate cancer diagnosis and treatment - but no way to easily do this. Nearly 11 years later, there are many more ways for people to get that support - more resources online, more prostate cancer nurses, cancer council phone support and so on. Key people who have seen our enterprise grow from strength to strength in that time are now a decade older. And in that decade, ageing key software that runs our systems has become more difficult to support, and lacks modern user features found in newer systems. Your Executive Committee has decided that the time has come to disband the Australian Advanced Prostate Cancer Support Group, and to move the support to other places. Substitute for our forums Your committee particularly recommends one or more of: PCFA Online community Pro: Totally Australian focus. Careful moderation and content creation by PCFA. A wide range of support materials including a blog and videos. Con: Limited forum type activity, New topics and replies are not sent out automatically, unless you have chosen to contribute to, or follow, that topic on the website. So, very little email. No private messaging. Your own posts don't show on Google HealthUnlocked Advanced prostate cancer Pro: The only choice that is exclusively for advanced prostate cancer. Very strong forum type activity. Strong content control by Malecare moderators. Daily email summary of posts. Post something useful, people doing a Google search will find it. A number of 'champions' who are very well informed and very active. Con: USA focus, but a number of Australian members already Facebook groups Prostate cancer support Australia (open to all) Prostate cancer partners Australia (carers only) Pro: Australian focus, Facebook familiar to many. Con: Content control more difficult Substitute for our phone-in meetings AnswerCancer (AnCan) High Risk/Recurrent/Advanced Prostate Cancer (weekly) Pro: Use phone to Australian number or computer to discuss issues. Con: No written exchange. USA focus. Substitute for our 'Talk to a man' There will be no easy link to talk to Jim, or a member he includes in the call, any more. But, getting to talk to anyone else in whichever group you join is very similar to what you did on our forums: Click on the person's name. Choose to send a private message asking if they are happy for you to phone them. (Include your own phone number and brief reasons you wish a chat.) Jim JimJimJimJim.com will return to being my personal site. I will leave the links to the suggested alternatives below on my home page for a very long time. I will still run the JimJimJimJim YouTube channel. I will participate on a personal level, but in a more limited way, in prostate cancer activities, including in the PCFA Online Community, HealthUnlocked, and perhaps AnswerCancer, and Facebook. I will continue as an Associate Investigator on seven projects for the Australian Prostate Cancer Research Centre. I would hope to continue to be involved with PCFA activities where my experience may be helpful. When this dreadful virus clears, I would hope to resume visits to local Prostate Cancer Support Groups. My thanks Wendy If you have met me at events over the years - from mid-2009 to March 2020 - I would most often have had Wendy at my side. Her support and understanding was critical to my contribution. Executive committee members Euan Perry Dr Bruce Kynaston Tony Maxwell Neville Black Alan Barlee Barry Elderfield Steve Cavill Member volunteers Volunteers who typed up minutes of guest speakers, subtitled YouTube videos, chauffeured me to local group meetings, assisted with YouTube video recording, travelled great distances to take part in advocacy for new advanced prostate cancer treatments, and so on. Contributing members Members who contributed to the forums - with their story, a reply to help someone else, some useful information they had come across, or a question that needed answers. It is the quality of the contributions that gives the most help to other members. It also helps many non-members around the world. (When we stopped counting visitors in 2016, there had been more than 500,000 views of the forums. The peak was 1,454 people online at the same time on November 29, 2018. The top post had 87,051 views over time.) PCFA We started in 2009 as a few members of PCFA who needed more than the local group could provide. We formally affiliated two years later, beginning a tight relationship which helped us thrive. A few years later, they took over funding the forums - a relief to Wendy and I. Finally There is nothing more rewarding than being part of a group of people determined to help others. My heartfelt thanks to all of you who joined me to make this one of the most rewarding ventures of my life. Thank you. Jim ... very final end Jim Links PCFA Online Community HealthUnlocked Advanced Prostate Cancer Facebook prostate cancer support Australia (open to all) Facebook prostate cancer partners Australia (carers only) AnCan High Risk/Recurrent/Advanced Prostate Cancer If you need help with joining one of these groups, click on this sentence and I will connect you to a volunteer. From today, you will not be able to post more topics. This is the only topic you will be able to reply to.
  13. 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 Pca, there's nothing weird or nice about our Pca which seems intent on killing us, despite a procession of mainstream medicine treatments, and all alternative herbal or other remedies have zero effect on out Pca progress. Anyone who has a stable Psa after diagnosis is a lucky man, but its usually just luck and nothing else that determines that, ie, their DNA behaves like that and the secrets of their DNA cannot be transferred to other men. I knew a man who posted here and who died last year, and his luck was real bad because RP failed, EBRT after RP failed, ADT lasted 3 months then failed, Cosadex made Psa rise from 7 to 40 in 2 months, chemo worked for first 2 doses, and 10 doses made Psa rise back to 40, and left him with horrid side effects that make ADT look like a picnic, and although Lu177 would have been a benefit docs tried PARP inhibitors because he was Brca2 positive, and that caused a delay of a month, and Psa went from 40 to 432, and then a whole bunch of new mets appeared in his liver, and he got so sick he could not have Lu177, so he died last year, less than 3 years after diagnosis and under 60 leaving a beautiful wife and 2 kids behind, which was a terrible disaster for them. But most of us can enjoy a long time with a reasonable QOL living with Pca as a chronic disease, but I spent $40,000 just to stay alive last year. There are plenty of men my age 73 who don't have Pca, and who may never get it, and their Psa may remain < 1.5 even at 85. Many under my age have a list of health problems that make my problems look trivial. Taking a walk around my hospital here is a humbling experience. I hope your luck lasts. Take care on the motorcycle, Patrick Turner.
  14. 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 multi-disciplinary team went. If he brought it up himself that would be fine, but if he didn’t then I felt it better to wait for a face to face consult to better gauge his reactions. Best wishes to Alan, Patrick and everyone else. Kind regards Dave DaveK1200@outlook.com
  15. 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.
  16. 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 blood again! If anyone would like some followup on ways to make a dietary change not only beneficial but easy-to-live-with as well, don't hesitate to get in touch. There is an incredible range of fantastic recipes out there now, altho' practically nothing back when I started. Cheers Peter
  17. 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:
  18. 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
  19. ardee

    AMG160 -new phase 1 trial using immunotherapy.

    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/
  20. Watch "PCFA Funded trial: ProPSMA Pet/CT (Prof Declan Murphy & Prof Michael Hofman)." on YouTube https://youtu.be/13h1T2uiYFA
  21. 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 little bit,but with a canes assistance I'm able to walk say up to 4-500 metres. My upper body is OK and no pain to report which was how I started this trial. So Overall I'm calling it a success so far especially for my walking. I have a ongoing nerve pain in my left leg which I started trial with,but we are working on it with nerve medication and it seems to be reducing slowly. The treatment & team treating me have been first class. Next week we increase infushment by 10 times as it has been successfully integrated into my immune system & T Cells. After next week I'll have a weeks break, then start another one month block of treatment 4 days a week which includes infusion treatment and monitoring. My Chills have been bearable and easily broken within infusion of liquid Panadol. I had some nausea & mild diarrhea the early morning after infusion but passed quickly. Hope this email finds all you guys in good health.
  22. 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 and Psa was about 1.6, with bone mets healing. By November 2019, a year after starting Lu177, Psa fell to 0.32, maybe with help of Xtandi which I'd begun in April 2019 during Lu177 shots. But 0.32 was Psa nadir, and ever since then Psa has risen and is now 14, with countless bone mets, but NO soft tissue mets anywhere, which is very good news. So my Pca seems to all be in my bones. So now with Psa galloping upward, I have talked to oncologist today about last week's 7th PsMa scan. Ga SUV is high enough to get a further benefit with more Lu177, and I begin talking again to doc at Theranostics Australia in 8 days by use of ZOOM which I cannot get the work yet, but I know an IT guy who will get it to work as well as Skype did in past. My doc said TA doc has already seen latest PsMa scans and said I should get nice benefit again from Lu177, which is in line with latest research by team at PeterMac hospital in Melbourne. My doc also listened to my dismal family history where many of my relations have died of suffered from disease of reproductive organs, Oa, Brca, and also melanoma. I am most probably Brca1+2 positive so my doc referred me today to a resident Canberra Hospital geneticist who will be in contact to look carefully at my blood to look for mutant Pca cells and test for Brac1+2, and maybe put me onto PARP drugs, Olaparib maybe. This therapy could be done while Lu177 is given. So in response to my rising Pca, wheels of the medical system are turning to favour me and I could not really say better treatment would be available anywhere else in the world. My doc was pleased to see me today looking healthier than ever in lycra at nearly 73 and cycling 200km+ a week without any symptoms of Pca. He's even bought a bicycle himself, and is enjoying the health it has brought to him. He has no time for 200km a week, but even 50km would give a benefit to CV system. I have been through this rising PSa stuff before, and had many more mets when I began Lu177, and after 2nd infusion of that in early 2019, there were 3 weeks where I cycled 960km. Psa was over 20. I have no idea if my exercise helps or not, but I sure enjoy two wheels. Last year's Lu177+ scans cost about $40,000, well spent, and maybe it will be same again this year, and luckily cost does not matter, and I really have nothing to whinge about. I watched a lady being interviewed on ABC who said she'd sold her house and spent $1 million to stay alive to enjoy her grand kids while she fought with breast cancer. That is really loving life. I don't know when I will lose my war with Pca, but I might just be lucky, and get another 5 good years. That's maybe enough time for some more promising research to convert into efficacious therapy for advanced Pca. After the chat with my onco I cycled on to get 60km for the day, and thought about what had been said, and I enjoyed perfect June weather in sunshine with no wind. Patrick Turner.
  23. 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 know of one based in Sydney, at least). Keep in mind that you still have your prostate gland, and that there is some evidence that there is 'communication' between the primary and mets - which in your case might somehow be a good thing - at least for now. Systemic treatments are usually very good at extending life in the context of Stage 4 cancer, but the downside is often ultimate drug resistance, caused by cellular mutation (evolutionary adaptation to the treatments), which can make the cancer harder to treat. Hopefully you're at least postponing that effect by successfully deferring systemic treatment. If things should change for the worse you have plenty of shots in the locker. Primary radiation therapy (IMRT or brachytherapy) or systemic lutetium could be considered to reduce your tumour load and to possibly help to activate other systemic treatments like abiraterone or enzalutamide. There would also the possibility of trying a GNRH antagonist (degararlix or a new one, relugulix), which work a bit differently to the usual ADT agonists (like Lucrin and Zoladex) that you had trouble with. For specific genetic variants, PARP inhibitors and immunotherapy have recently emerged - lots of possibilities! In the meantime, you're doing great while keeping your powder dry! Best wishes, Alan
  24. 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 told me my June 2020 PSA result was 10. I asked him if I should be worried about the small rise. He explained that I shouldn’t be concerned about it when compared with my results over the last year or so. He said that PSA tests have a “margin for error” and when that is taken into account my results are quite stable. So I was delighted to hear that. My last 6 PSA results are: March 2019: 14 June 2019: 13 August 2019: 10 December 2019: 9.6 March 2020: 8.7 June 2020: 10 We finished the phone consult agreeing that there is no need to change anything , and he is very pleased with how I’m going. If anyone has any comments or questions please put them in this thread, or send me a Private Message, or an email to DaveK1200@outlook.com Kind regards Dave
  25. 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.
  26. Patrick Turner

    Increasing the numbers of Specialist Prostate Cancer Nurses

    Thanks for the info Nev. There is one Pca nurse at Canberra Hospital who is very good at her job when I want email her about appointments or other info and she knows how to email back. Many doctors or other staff in hospital will not use email, and their voices on any phone are so hard to decypher that phones are useless. I hear the news on ABC radio perfectly, so I don't need a hearing aid, but its the rest of the world that "can't talk proper" any more. But I have just been referred again to Theranostics Australia and I'll have to download ZOOM because Skype not to be used any longer but Genesis Care who do the admin work for TA understand how to use emails. All is well, I have no symptoms, but Psa is galloping upward, so maybe I get more Lu177. Regards to all, Patrick Turner.
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