Advanced Prostate Cancer Teleconference 19 August 2011

[JimmyToowong]

Posted on behalf of Girlie Man

Advanced Prostate Cancer Teleconference 19/8/11

Summary.

Conference commenced at 9:30 am.

16 men attended and there was, later, a guest from the Cancer Council Queensland.

One apology was recorded as the person had to travel.

Discussion:

One spoke of his diagnosis with aggressive cancer in 1998 controlled with ADT until Feb last

year. Doubling time was then quite short. Had 3 gold pellets inserted then radiation which proved

to be very accurate. He was currently on an experimental drug (prescribed by a medical

oncologist) which appeared to be working well.

Another spoke of his initial diagnosis of sciatica in March 2008. On 14 July 2008 he was

diagnosed with stage 4 metastatic PCa. He was placed on Casudex/Zoladex and as of 18/8/11 PSA

is 3.5 and is now off Zoladex. He had radiotherapy in Feb / Mar 09 to pelvis and right shoulder.

He had osteoporosis plus other morbidities and had a Zometa infusion the previous day to

strengthen his bones. A suggestion was offered of crutches but only if his arms could take the

strain. He said that he was very active and walked most days plus did hydrotherapy. He confirmed

that the radiation to his pelvis had significantly reduced the cancer there.

A third reported that he was diagnosed Dec 09 stage T3b, Gleason 4+5, 18/18 cores were positive.

He was placed on ADT immediately which was continuing. In March 2010 he had 39 treatments

with IMRT (intensity modulated radiation therapy). In mid Dec 2010 painless rectal bleeding

began. 15 Feb 2011 colonoscopy confirmed delayed onset proctitis. Treated with argon plasma.

Condition worsened. Radiation Oncologist ordered 2 courses of steroid foam. He was referred to

Hyperbaric Unit at RBWH but, before commencing and at another’s suggestion, saw a semiretired

colorectal surgeon. Dr S. explained that as the body tries to heal itself conditions change.

He applied formaldehyde to each site with considerable improvement noticed by the narrator. One

or two more monthly treatments should completely fix the proctitis. Second and even third

opinions are strongly recommended in such situations.

A fourth said he was diagnosed in 2008 with Gleason 9 and the cancer was outside the prostate.

Put on ADT with Cosudex then IMRT. PSA was not a good measure of his cancer and was never

high but after falling to 0.01 it then started to increase quickly. Bone metastasises and tumours on

the liver were confirmed. Some soft tissue problems were treated with radiation as were pain in

back and shoulder. Then 10 treatments of Taxotere plus Zometa for bone strength. A substantial

drop in tumour size and PSA was achieved but side effects were severe. He wishes to talk with

men in a similar position to himself.

A fifth commented that he had a prostatectomy in Oct 2007 and, with a rising PSA, insisted on

chemotherapy before ADT. A Medical Oncologist administered 9 doses of Taxotere then 24

weeks of ADT and radiation, all of which brought his PSA down to 0.03 in June 2008. In 2009 he

had a blocked urethra from radiation scarring.

A sixth had a radical in 2003 which was not successful. Had been on Lucrin since. After PSA

returned to 5 or 6 last year, Cosudex was added. After this failed Avodart was added. If this also

fails, he will be looking at an Abiraterone trial.

Jim Marshall described that he started the web page jimjimjimjim.com so that it is very easy to

remember and anyone can reach him via the contact option on the web site. Further he described

how a small group started to share interesting information via email but, because of the difficulty

of finding such articles amongst emails, he devised the forum. The forum can also be accessed via

by clicking on http://jimjimjimjim.com then 'prostate' on the left. He then outlined some issues with emails. In the

forum there is a place called “My Story” where men can place their story and look up other men's

stories. Then there is an envelope graphic on the right (if logged into the site) which will let you

email this man. A downside is that the forum is public, however if a man wishes to remain private

he can place a request to talk to someone with a certain experience and others will see this request

and contact him privately. Jim was congratulated on the excellent work that he had done in

developing this forum.

Action:

It was suggested that we should place a news item on PCFA Support Groups Communication Hub

so that other states could become aware of this forum and advanced men could then get access –

this has been done.

Samantha Clutton, the manager of the Cancer Counselling Service at Cancer Council Queensland

joined the group. This service is available free to anyone suffering from cancer in Queensland.

The service is available either face to face or over the telephone and can be up to 6 sessions. There

is also the Mindfulness Meditation groups which has been shown to be beneficial to men with

PCa. She explained that they do see quite a few men with advanced PCa and it is also available for

partners and other family members. It is an appointment based service so you call 13 11 20 Mon-

Fri 9-6 and ask to speak to one of the psychologists in the Cancer Counselling Service. They

specialise in helping people deal with anxiety and/or depression and/or feeling overwhelmed plus

decision related stress and relationship issues.

A discussion ensued noting that in Australia few doctors request testosterone tests whereas in the

USA it appears to be regularly done.

One member wished to discuss Lucrin. Another said that he has been on intermittent Lucrin for

almost 4 years. He has changed to Zoladex because Lucrin caused considerable lethargy and hot

flushes. Yet another mentioned that he has been on continuous Lucrin for 8 years and for him it

was tolerable, with exhaustion being the worst. The next contributor mentioned that, when coming

off, it depended a lot on how long one had been on the drug. If 6 months only, then expect about 7

months before everything is back to normal. If 2 years then it is 8 months before anything at all

starts to happen and over 2 years before testosterone levels settle down. If one goes beyond 2

years, do not be surprised if there is no recovery at all. That fitted in with the research of the man

who introduced the discussion – after 18 months it took about 6 months before things started to

happen. He said that his doctors had warned him to be wary of his mental state when coming off

Lucrin. It was mentioned that as men get older their testosterone levels drop and they are more

prone to depression. Men who are organically depressed are not likely to be aware that they are

depressed.

It was stated that Abbott, the people who supply Lucrin, will fund an exercise physiologist for a

nominal $5 per session while you are on Lucrin. Just call 1800 626 752 for an application form.

One man stated that he had joined “The Man Plan” but not being at a major centre meant an

exercise physiologist was not available to him. He had received a booklet on hormone therapy and

a rubber exercise tube and some exercises.

For men who were not computer literate, Jim Marshall, the creator of the website said that, if they

contacted him, he would be very happy to put their details on the forum for them. This will then

enable others to obtain that persons email address and phone number. Further, he advised that if

we just to put our names in the My Story area of the forum then contact details would be available

to others and this is his preferred method of sharing contact details. If logged into the forum then

an envelope will appear in the My Story section on the right hand side. He also pointed out that

jimjimjimjim.com website had links to introductory videos on how to negotiate the forum. He then

asked if anyone knew anyone in Australia who was on Ketoconazole, or who had used it in the

past, to please contact him with details.

Action:

One member advised that he would contact the Chairman of SAC and advise him of the forum and

teleconference – this has been done.

Thanks were expressed for the setting up of the website and forum.

The teleconference closed at 11:20.