Happy third birthday to us! Three years of men with advanced prostate cancer supporting each other.

[JimJimJimJim]

Official history - Australian Advanced Prostate Support Group

Updated August 2016

 

August 2009

The Australian Advanced Prostate Cancer Support Group began as a sub-group of the Brisbane Prostate Cancer Support Group. Inspired by the handouts Euan Perry was giving about his treatment to advanced men, Jim Marshall began an email list for advanced men to share information.

 

August 2010

Tony Maxwell and Jim Marshall met at a large prostate cancer conference on the Gold Coast. There was a wealth of Australian and world experts attending. 

 

However, because advanced prostate cancer was not a focus, they met quite a number of advanced men who got little from the exercise. For some the conference had added to their distress because they had been expecting to get some insight into their condition.

 

'Somebody should do something about the advanced guys', Jim and Tony said.

 

Tony started on the big picture - How many men are we talking about? What is PCFA doing? Can we get them to do more?

 

Jim's email group became national. He tried a group blog, then settled on a forums website: Advanced Prostate Support Community.

 

July 2011

We started our new forums site. JimmyToowong moved all 250 articles from the old forums to the new.

 

August 2011

The group got its biggest single boost in August 2011 when Jim met with Daryl Hyland and Bruce Kynaston, both of whom had been looking at what PCFA could do for advanced men. Daryl had collected names of advanced men, and had arranged for PCFA to provide a teleconference facility.

 

We have held a phone-in meeting that month and every month since. Retired oncologist Dr Bruce Kynaston acted as Chair for these meetings for the first five years.

 

We affiliated the Advanced Prostate Cancer Support Group with the Prostate Cancer Foundation of Australia (PCFA) with Jim Marshall as Convenor and Euan Perry as Secretary. 

 

September 2011

Jim posted our first YouTube video.

 

August 2012

It had been difficult to communicate the website address of the forums: http://www.AdvancedProstateCancerAustralia.ipbhost.com/

Jim Marshall gave up his personal website to the group, and JimJimJimJim.com was born. Having a real website as well as the forums allowed us to have standard pages of information. Our Twitter feed @JimJimJimJimCom was started.

 

The new national chairman of the PCFA, David Sandoe, and its CEO, Dr Anthony Lowe, began widening the role of the PCFA, including men with advanced prostate cancer, and our groups in particular.

 

April 2013

While preparing to advocate to have some prostate cancer drugs put on the PBS, Jim engaged with groups in Wales, Scotland and the USA. Chuck Maack, leading USA advocate for men with prostate cancer joined our group as our second overseas member.

 

August 2013

Our first advocacy win. After a campaign run in partnership with PCFA, the drug Zytiga (abiraterone) was approved for inclusion on the Pharmaceutical Benefits Scheme (PBS) for men who had failed chemotherapy.

 

Nev Black took over from Euan as Secretary, and Alan Barlee joined us as Treasurer.

 

August 2014

Earlier in the year Paul Hobson (a very active member since 2012) joined with Jim, Tony, Nev and Alan to comprise a formalised Executive Committee.

 

The PCFA issued the Advanced Prostate Cancer pack. Tony and Jim were contributors to this professionally prepared collection of booklets with information for all men with advanced prostate cancer.

 

December 2014

Jim, Paul and Alan attended the World Cancer Congress in Melbourne. Jim gave two presentations:

• one sharing the main stage in a rapid fire exercise (Peer-to-peer support of men with advanced prostate cancer: An exercise in finding appropriate technology);
• one in a small abstract presentation booth (A video advocacy campaign prepared with technology readily available on most computers).        

 

April 2015

Convenor Jim appears before the Senate Standing Committee on Community Affairs as part of their inquiry into:

The availability of new, innovative and specialist cancer drugs in Australia.

 

June 2015

Alan, Paul and Jim join with PCFA CEO Anthony Lowe  at a press briefing to launch Men's Health Week in Sydney

 

September 2015

Jim and Paul attend the Prostate Cancer Research Institute (PCRI) conference in Los Angeles where they meet with a number of the USA advocate leaders. Mark Moyad brings Jim onto the main stage, claims he is homesick, drapes him with a Michigan Wolverines Fan Bead Necklace, presents him with two giant cans of Fosters Lager, an Outback cap, a Crocodile Dundee DVD, and a boomerang. 

 

March 2016

One result of the Senate review of 2015 was that the guidelines for putting drugs on the PBS were changed. Tony and Jim attended the PBAC Guidelines Review - Presentation Forum in Sydney as part of this process.

 

Later in the month all members of your Executive Committee met with Mark Kinsela, Senior Advisor to the Minister for Health at the office of the Minister in Canberra to discuss issues of import to men with advanced prostate cancer.

 

May 2016

Jim and PCFA CEO Anthony Lowe met with staff of Bayer Pharmaceutical about getting Xofigo on Medicare.

 

Later in the month Paul Hobson, Alan Barlee, Nev Black, Graham Bloomfield, Kerry Drinkwater, David Abrahams, Zeni Muhiji and Jim met with staff of Janssen about getting Zytiga (Abiraterone) one the PBS pre-chemotherapy.

 

Stats August 2016

We have more than 180 members Australia wide. Our forums have had 2151 total posts, and more than 500,000 non-member views.We have posted 1,215 advanced prostate cancer links on our twitter feed @JimJimJimJimCom. We have held 60 phone-in meetings (teleconferences). Our YouTube videos have had some 7,000 views.

 

Our service 

Although it may seem from the statistics that our primary purpose is information, I think the greatest service we do to men with advanced prostate cancer is to let them talk to other men in the same boat. In addition to the monthly phone-in meetings, there have been hundreds of one-on-one phone calls where men with the disease have supported each other.

 

Jim Marshall (not a doctor) said ...

I would like to thank everyone who has made a contribution to helping men with advanced prostate cancer through our group:

    •    our Executive Committee members and other 'workhorses' who spend enormous amounts of time in supporting men with prostate cancer;

    •    those who contributed to our advocacy campaigns;

    •    those who have contributed to the forums;

    •    those who have done their bit by spreading the word; and, most importantly

    •    those men and their partners who have told their stories, or listened with empathy to the stories of others.

 

You all should feel proud of yourselves!

 

Happy birthday to us!

... end Jim

 

[Popeye]

I appreciate your humble Happy Birthday Wishes to all the members more than you realise. However I would like to publicly say to the founding group and those that have followed with volunteer assistance a huge THANK YOU TO YOU GUYS from me.

 

As an advanced prostate cancer patient I fully appreciate what we have here in this group as it constantly reminds me I am not on my own with this illness. There are other members of this group who have been around with their own advanced prostate cancer for a lot longer than myself. This gives me a great comfort that perhaps I might continue being able to manage my personal albatross for a long time yet. 

 

I enjoy the few phone conferences I have been able to take part in and for those I miss, well I look forward eagerly for the minutes. I have appreciated the technical and up to date news from all those NON DOCTORS IN OUR GROUP who direct me to my doctor for medical advice.

 

Long may this group prosper and continue to bring assurance and hope to every man with advanced prostate cancer.

 

Lee aka Popeye

[Billy Brag]

Hi Guys

 

Congratulations –this is a great group –keep up the good work

 

Ian Vagg -8 years survivor and still going strong