Happy Birthday to us - our official history

[JimJimJimJim]

Official history - Australian Advanced Prostate Support Group

Updated December 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.

 

February 2010

The Prostate Cancer Foundation of Australia (PCFA) organised a talk by well known USA medical oncologist Dr Charles Myers ("Snuffy Myers"). At the conclusion Jim called for advanced guys in the audience to meet outside for coffee, and added a few more men to the group.

 

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.

 

March 2013

First Face-to-a-Name meeting. Members from South East Queensland and Northern New South Wales travelled to Greenbank (south of Brisbane) to finally meet face to face.

 

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.

 

May 2013

First Victorian Face-to-a-Name meeting held in Melbourne.

 

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.

 

November 2013

Started Do drop in! where members invite other members to share a coffee when they are passing through. First taker was Jim Offer from Chillagoe in outback northern Queensland, who dropped in to Nev's place in Postmans Ridge 1,840 km away to meet with Nev and Jim.

 

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, 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.

 

July 2016

Alan Barlee and Jim reviewed the development versions of Advanced Prostate Cancer Xplained, an app developed by MedicineX, and available for Apple, Android and online.

 

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.

 

September 2016

Nev Black, Alan Barlee, Tony Maxwell and Jim took part in the recording of a YouTube video interview with CHAARTED chemotherapy trial leader, medical oncologist Christopher Sweeney and his Australian colleague, medical oncologist Gavin Marx.

 

Nev Black, Paul Hobson, Steve Cavill and Jim attend the Prostate Cancer Research Institute (PCRI) conference in Los Angeles where they meet with a number of the USA advocate leaders and doctors. Mark Moyad once again brings Jim onto the main stage and this time presents him with at T-shirt which reads "Mark Moyad Challenge Winner 2016".

 

Nev Black, Alan Barlee, Tony Maxwell, George Curr, Ron Wilson and David Abrahams joined PCFA CEO Anthony Lowe and medical oncologist Paul de Souza at a Consumer Workshop with Astellas, where getting Xtandi (enzalutamide) on the PBS was the central topic.

 

October 2016

Advanced Prostate Cancer Xplained was launched.

Nev Black, David Abrahams and Jim met with a Janssen (Zytiga (Abiraterone)) staff member, to discuss the development a resource to help advanced men and those who care for them.

 

November 2016

The Prostate Cancer Foundation of Australia (PCFA), sponsored a major speaker at the World Theranostics Conference in Melbourne. As part of this sponsorship, PCFA was given complementary registrations for the conference, and invited Paul Hobson, Alan Barlee and Jim to attend. Theranostics is basically about using radioactive chemicals which will attach to cancer cells to find, or to kill cancer. PCFA and Movember sponsor research in this area, and a number of our members have had PSMA scans, or Lutetium therapy. 

 

Stats update December 2016

YouTube views have reached 11,000.

On an average day:

• 48 people watch our YouTube videos for a total 4 hours a day;
• 40 people read our Forums for a total of 3 hours a day; and
• 30 people read our JimJimJimJim.com site for a total of 3 hours a day.

 

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

 

[Len Lamprecht]

Hello Jim,

 

We really value your attendance at our meetings, as I believe that it is important even for the newly diagnosed people to realise that there are still things that can be done should they be unlucky enough to have a relapse. Personal access to you is vital.

 

My whole-hearted support to the comments  you made below. Please convey my congratulations to all involved, and to your members and intended members for having the courage to speak out and give hope and encouragement to those who follow. For if no one speaks up, the problem is not seen to exist: Therefore the services are not seen to be needed; especially in the Urban &Rural Areas.

 

Well Done ! Please add my congratulations, Len 

[JimmyToowong]

Posted for DT:

Dear Jim

 

I would like to thank you for your leadership as well as all the hard work and support you have provided to the Group over the years, and to congratulate you on the achievements (including the many "silent" ones, in terms of the beneficial impact on the lives of members and their families).

 

Could you please pass on my thanks also to Euan, Tony, Daryl, Bruce, Nev, Alan, and Paul for their respective contributions to this wonderful initiative

 

Kindest regards

DT