Agenda - phone-in meeting this Friday 23 May 2014: Expert medical oncologist Howard Gurney

[Admin]

Agenda

 

Disclaimer

This Community does not give medical advice. No members are authorized 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 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 

 

Dial in 

You must dial in - we do NOT dial you.

 

Phone number only available in email to members

 

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 - New!

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. 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.

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.

 

Apologies 

None to date.

 

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. 

 

Zytiga before chemo on the PBS? - have your say! 

Zytiga (Abiraterone) is available cheaply on the PBS to men after harsher chemotherapy with Taxotere (docetaxel).

 

The committee making that decision for the government called for public comment.

 

Our members, their friends and family, contributed many submissions on how it may change their lives.

 

The same committee is now deciding whether to recommend to the government that Zytiga be on the PBS before chemotherapy.

 

Jim will tell you how you can help with the campaign to greatly improve some men's lives. The Management Committee (Nev, Alan,  Paul Hobson and Tony Maxwell have been working with Jim on this campaign.)

 

[in the meantime, you can find more information (YouTube video, link to the questions) at the top of our JimJimJimJim home page:

http://jimjimjimjim.com]

 

Special expert guest speaker - Professor Howard Gurney

Clinical Associate Professor Howard Gurney is a medical oncologist who works in Western Sydney. He is the Director of Medical Oncology for Cancer Services, Western Sydney Area Health Service.

 

He is involved with the clinical trial of experimental agents in the treatment of cancer and is head of the Clinical Trials Unit in medical oncology at Westmead Hospital. Professor Gurney will speak to us on:

New Drugs for Hormone Resistant Cancer 

 

Other new stories or updates 

Any man who wishes to update us on his progress is welcome to contribute here. Col Rees will head the list with an update on his progress. Others are welcome to follow.

 

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. 

 

Future phone-in support group meetings 

Phone-in meetings are held on the fourth Friday (NOT always the last Friday) of each month (except January (one week late) and December (one week early)). In 2014 there will be no phone-in meeting in April because the last two Fridays are public holidays.

 

Phone-in support group meeting dates 2014

January 31 (not the 4th Friday)

February 28

March 28

April NO phone-in (Easter, Anzac day)

May 23 (not the last Friday in the month)

June 27

July 25

August 22 (not the last Friday in the month)

September 26

October 24 (not the last Friday in the month)

November 28

December 19 (not the 4th Friday)

 

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 send to you because you are a member of an Advanced Prostate Cancer Support Group.

 

Visit JimJimJimJim.com and click on Contact Jim if this is a problem.

[Popeye]

My apologies one and all, unfortunately I will not be in attendance as I will be 14 meters below the surface in a hyperbaric chamber in Townsville Hospital on Friday morning.  I will be dressed in colourful party clothes complete with cute blue booties and wearing a Dr Who Dalek helmet. I am scheduled for fifty treatments to combat my radiation cystitis and radiation proctitis. This prostate stuff just goes on and on and on.....I look forward to the minutes and wish everyone the best for now.

 

Cheers

Lee aka Popeye

[Paul Edwards]

Most disappointed that Townsville Hospital don't have a phone in their hyperbaric chamber and that you won't be able to dial in.   50 sessions is an awful lot of driving to and from Townsville. Good luck with the treatment.

[Popeye]

Hey Paul : Just to let you know anything electrical is a no go in the chamber as there is an extreme fire danger with the pure oxygen hence the party clothes. Each session takes about 2 hours at an equivalent depth of 14 meters. My home is 5 hours drive from Townsville so I am boarded up here for the duration of the fifty treatments, so far I have completed 18. The treatment is non invasive with no bad side effects so I feel OK. The science behind this is that under pressure breathing pure oxygen allows oxygen to reach blood vessels that under normal circumstances would not be possible. This infusion of oxygen under pressure is then able to assist blood vessels to heal themselves and is used on a multitude of medical conditions involving mostly wound healing including radiation damage to organs and tissues. I have been unlucky enough to draw the short straw with diagnosed radiation cystitis to the bladder wall, (rupturing blood vessels causing bleeding and neucrosis of the bladder wall) Also radiation proctitis (similar to the bladder problems but includes narrowing and blockages of the bowel)

 

My information tells me this is the gold standard treatment for my type of issues, time will tell for me if this is the case. I have read that every cancer patient travels a different path and I believe this is true as I travel down my personal track to whatever future is at the end of all this.

 

Cheers Mate

Lee aka Popeye

 

I am looking forward to the minutes.