Agenda - phone-in meeting of Friday 25 October: Members and partner updates

[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 numbers only in email.

 

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.

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 

Bruce Kynaston, Tony Sheehan

 

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. 

 

A clinical trial - from the inside 

While member Noel Turner from Ipswich has been on a clinical trial of the same drug for the past 2 years, the drug has changed its name from MDV3100 to enzalutamide to Xtandi. But as with all drugs, there are pluses and minuses. Noel will give us the lowdown on one of the latest 'miracle' drugs for advanced prostate cancer.

Special expert guest speakers

We have had the following suggestions.

Any further suggestions?

Any help with people who might be approached to speak?

 

Pain control in prostate cancer

This man had problems from 'nerve deadening' injections, and would like to hear from a neurologist who is familar with this.

 

What might things can cause PSA to rise after a prostatectomy, and how can you tell which it is?

This man had Gleason score of 6 in just 2 out of 12 cores - apparently little threat, but now his PSA is steadily rising. Doctors have  said so far, "Metastic cancer", "cross reactivity with circulating kallilkreins", "micro metastic cancer" and "prostate tissue remaining and regrowing"

 

Understanding pathology tests and results

Alan Barlee has already organized Dr Devika Thomas of the Dorovitch Pathology labs to tell us about key pathology tests so we can understand our treatment and progress better. Dr Thomas will be our special guest speaker at our 22 November Phone-in Meeting.

 

Repeats of earlier speakers

Cancer Council Counselling, Nutrition and Diet, Exercise, Legal advice, Spirituality, Diabetes, Pain management with drugs, Clinical trials, Radiation oncology

 

Overseas clinics, complementary and alternative cancer treatment

We can't do this one. Our charter from PCFA limits us to evidence-based medicine. This position is keenly upheld by a Convenor who has watched someone die young (not of prostate cancer) when evidence-based medicine offered a complete cure.

 

Other updates 

Any man who wishes to update us on his progress is welcome to contribute here.

 

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 

Teleconference meetings are held on the fourth Friday (NOT always the last Friday) of each month (except January, which is one week late) and December (which is one week early). So February may have 2 teleconferences - the delayed January teleconference, and the normal fourth week. In 2013 this means teleconferences on both 1 February and 22 February.

 

Phone-in support group meeting dates 2013

1 February 2013 

22 February 2013

22 March 2013 (not last Friday in month)

26 April 2013

24 May 2013 (not last Friday in month)

28 June 2013

26 July 2013

23 August 2013 (not last Friday in month)

27 September 2013

25 October 2013

22 November 2013 (not last Friday in month)

20 December 2013 (not last Friday in month, not fourth Friday in month)

 

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.