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Advanced Prostate Cancer Teleconference 24/9/11


Euan

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Advanced PCa Teleconference 24/9/11

The article on Living with Grace was mentioned and can be viewed at http://advancedprost...bruce-kynaston/

Man #1 wished to know whether chemo should be before or during radiation. Advice given was to be guided by his doctors.

Jim Marshall announced that the Advanced Prostate Cancer Community automatically emails out to members new topics and new replies to their own topics. Members will have to "Follow this topic" to be notified of new replies to topics they did not start - see the Help files. For help click on the word Help under the blue ribbon on the Community. Through JimJimJimJim.com you can reach the Community, become a member and read the Help files. Jim Marshall’s excellent work was acknowledged by members.

Guest Laurie Lepherd retired from fulltime work as a lecturer in music at USQ in 2000. He then trained as a pastoral carer. He currently talks to groups on pastoral care through Cancer Council Queensland’s Cancer Connect program. He is currently working on a PhD with men with advanced prostate cancer. He said that everyone has spirituality and religion is just part of spirituality. His emphasis is in finding out what lifts people and this was usually connectedness to a partner, family, friends, others, to a higher being and also self connectedness. Most men that he interviewed got a real lift from their partners and families. Many also had a connectedness to diet, exercise, and meditation and believed that this would help them with their cancer. Laurie indicated that most but not all men managed to find something to turn around their outlook. Man #2 indicated that he was part of a trial doing meditation in part via telephone with Cancer Council Queensland. Laurie can be contacted by email lepherd@usq.edu.au , or mobile 0418192517, or 07 4631 5459 (office hours).

Man #2 spoke of his incontinence and asked if other men who have had radiation and androgen deprivation therapy (ADT) also experienced incontinence. Man #3 suggested that ADT can cause muscle loss this could be part of the problem and that pelvic floor exercises should be done. Strong pelvic floor muscles would likely reduce the incontinence whatever the cause. Suggestion was to talk to his urologist about both the sling and the more expensive artificial sphincter.

Action: Man #4 said he would check with the support groups and if men any have had the sling or artificial sphincter he would pass the contact details on.

Man #1 spoke again of his lethargy with ADT. Man #3 mentioned that the lethargy may result from depression. Man #5 suggested asking his GP to put him on a care plan. An exercise physiologist would create an exercise plan based on his limitations. Patients under an EPC (Enhanced Primary Care) plan can access Medicare rebates for up to 5 visits per calendar year to an allied health provider (dental is max $4,250 over 2 calendar years).

Man #2 mentioned that you can get $500 per year from the federal government for incontinence pads and free pads from the state government. Two men confirmed their experience while on ADT that exercise seemed to help with muscle loss and fatigue.

Man #6 mentioned his general muscle loss while on ADT but now he is almost a year off ADT his flow rate has improved. Exercise also helped him with his lethargy. Man #7 mentioned that when he stopped exercising his muscle loss was quite rapid but with exercise he gained strength while on ADT.

Man #6 asked about treatment once metastasis is confirmed. Man #3 mentioned Taxotere was available but other than that there were clinical trials available if you qualify. Man #7 mentioned that the PBS approves some anti-androgens for use in conjunction with LHRH agonists, Man #5 spoke of Estradiol or Ketoconazole which can be used if PSA is not rising too fast – generally not available in Australia. If PSA rising fast then Taxotere is recommended. There is a section on secondary hormone therapy in the Community. Man #2 said that he was on Zoladex and Cosudex combination. Cosudex is approved by the PBS for “Metastatic (equivalent to stage D) prostatic carcinoma in combination with GnRH (LH-RH) analogue therapy”.

Man #6 mentioned that ADT caused his bones to become porous. Man #1 mentioned that after many years on intermittent ADT his bone density is close to osteoporosis (osteopenia). Man #7 mentioned that he experience high bone loss in spite of calcium plus vitamin D plus resistance exercise. Bone loss was reversed after impact loading exercise plus Alendronate tablets were added. Man #1 mentioned that he was on Protos (another bisphosphonate). Man #5 cautioned about taking too much Calcium. He recommends having both your Calcium and your vitamin D checked by a doctor who will recommend supplementation as required. Man #3 cautioned that too much calcium can cause renal stones and crystals in your urine. Man #5 said that with all bisphosphonates there is the risk of osteonecrosis of the jaw – a painful condition. It is a low risk with the strong bisphosphonates such as Zometa but is very low risk with the tablet bisphosphonates. The main concern is not to have teeth extracted while on these drugs.

Many men gave their appreciation of the days teleconference.

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