Advanced Prostate Cancer Teleconference 3 Feb 2012

[Euan]

John Goodall from the Royal North Shore support group as well as Lorraine Hagaman for PCFA Qld office were welcomed.

Man #1 spoke of starting on abiraterone (Zytiga®) daily tablets. He has been taking them for just 3 weeks and the only side effect so far is a temporary bout of diarrhea. He takes 4 tablets on an empty stomach each morning and then after meals he takes a prednisone tablet twice daily.

Man #2 said that he has been on the same regime since October. He also had a touch of diarrhea and nothing else. Both were told that initially their PSAs will rise but then fall. After 3 months a bone scan and CT scan showed that his cancer was stable. Prior to the abiraterone his cancer had been growing rapidly. Unfortunately his pain in the hip has got worse. He was diagnosed in Oct 2008, had some radiation followed by 10 treatments of docetaxel (Taxotere®) with 3 weeks between each.

Guest speaker Elizabeth Gill said that the most important thing is a will. If you die without a will any children are entitled to a portion of the chattels and this can be a huge problem for the surviving spouse. If you are single your estate goes to brothers and sisters then uncles and aunts etc and if no relatives to the state. If you do have a will and one or more of the beneficiaries are now deceased then this can be a partial intestacy and a similar process takes place for this portion of the will. If a property in the will has a mortgage over it you should specify if the beneficiary is to receive the property free of the mortgage or not. Loans to family members or loans to companies or trusts need to be dealt with in the will to avoid potentially big problems. There can be capital gains taxes to consider also. Marriage can cancel a will. Check your superannuation and role the customary many super accounts into one. Check the super beneficiaries as this is outside the will. Best not to place superannuation into a will for tax reasons. Another major complication is share holdings and records of purchase dates and prices. Also make sure your tax returns are up to date. She strongly stressed the need for enduring power of attorney which applies to financial and/or health matters. There is also the advanced health directive. Make sure your executor knows where the will is kept.

Man #3 reported that his surgery to fit a sling is working well and his incontinence has largely stopped. He said that he was on hormone therapy which is working well but suspected it is making his incontinence worse. Man #4 explained that hormone therapy will make his muscles weaker so that continued pelvic floor exercises were even more important.

Man #5 explained that after coming off 3 years of hormone therapy his PSA was rising quickly but his doctor prefers that he wait until his PSA gets back to 20 or 40 before going back on hormone therapy. One man explained that his medical oncologist has kept him on hormone therapy for 8 years continuously. Another spoke of similarly being advised to come off hormone therapy for a while but he sought a second opinion from a medical oncologist and because he tolerated the hormone therapy well he was happy to keep him on it for much longer.

Man #1 spoke of a physiotherapy practice in Helensvale which his doctor referred him to, in relation to pelvic floor exercises. He highly recommends them and they bulk bill him.

Changes have been made to the advanced prostate cancer website accessed through jimjimjimjim.com. A number of links to other advanced prostate cancer websites have been added as have links to prostate cancer drug trials. Also pointed out was the star system where uses can rank a website for usefulness. You can also add comments and both of these aspects can help others.

Lorraine Hagaman is the new Support Group and Outreach Project Coordinator for Queensland and can be reached at 3166 2148 and 0426 249 407. She has been invited on as a member to provide assistance where appropriate.

Man #7 spoke of his 8 years on leuprorelin acetate (Lucrin®) and his PSA had gone down and back up again. Adding bicalutamide (Cosudex®) on top of the Lucrin® dropped his PSA down to about half but his PSA started to rise again. He dropped Cosudex® about 6 months ago but his PSA kept rising. He then tried dutasteride (Avodart®) but his PSA still kept rising. He is going on to nilutamide (Anandron®) to see if that makes a difference. Because of his diabetes he now takes metformin (Diabex®) and that is believed to help with his PSA.

On 11 April at the Brisbane support group meeting commencing at 7pm the topic will be Updates on Advanced Prostate Cancer by a well known medical oncologist.