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Advanced Prostate Cancer Teleconference 23 March 2012


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Thanks were expressed to Tony Maxwell for chairing last month’s teleconference and also Nev Black for the teleconference summary plus Tony Brown for standing by in case of technical hitches.

Man #1 said that he was to have a PET scan with glucose contrast and CT scan at the Mater and asked if it can find prostate cancer. Man #2 said that his oncologist is attempting to organise a PET scan for him. He is not sure which type of PET scan as yet. Man #1 said that he is confused because his urologist says that a PET scan cannot find cancer but his oncologist says that it can.

Man #3 said he is continuing on abiraterone, has minimal side effects and is on fortnightly checks for the first 3 months. He is anxious to get his next PSA test to see what difference abiraterone is making.

Man #4 said his PSA is now 22 and he has gone onto leuprorelin (Lucrin®) and bicalutamide (Cosudex®). He is very tired as a result of the drugs. Man #2 said he has been on Lucrin for 9.5 years continuously and the tiredness has been his biggest problem. He suggested that calcium, vitamin D and bone density be checked. Man #4 said that they could see some cancer in the lymph nodes on the right. Man #2 suggested the possibility of radiation to these lymph nods if they are accessible. He said that for himself he is hoping a PET scan will show where his cancer is so that radiation to that area would slow things down a bit.

Man #5 last spoke to the NSW chapter conference in Tamworth and likes to speak of the humorous side of his treatment. He was diagnosed with MS (multiple sclerosis) in Oct 2001 but did not tell his wife. In 2004 his doctor performed a DRE and said that he did not like the feel of that and sent him to an urologist.

A biopsy was done on 6th July 2004. On the 8th July he received a call from his urologist requesting an immediate consultation. He had cancer in both sides of his prostate Gleason 8 and said that he had booked his surgery for the 28th July. The surgery left him with “brewers droop” but the tablets sildenafil (Viagara®) etc. did help. Now that he is 60 the tablets and even the injections do not work well so he is contemplating having an implant done. The big problem with the injections is the loss of spontaneity. By the time you do the injection and it is working you partner may be snoring. These days you use an injector, you just place it against your penis and press the button. To get the erection to go down he uses Sudafed. The other thing is that you feel like a human dildo it is not the same as before.

After his operation he had a catheter and a bag for about 4 weeks. After this he had to self catheterise and when being shown he was being too gentle. Eventually the nurse shoved it up properly and he peed all over her office floor. Fortunately this only lasted for 4 weeks.

Daryl Hyland spoke of the meeting to be held on the Gold Coast where 5 scientists from the Mater Medical Research Institute will be presenting their research.

Man #6 described Positron Emission Tomography or PET scans. Positrons unlike electrons are quite short lived. When a positron combines with an electron two gamma rays are produced which fly off in opposite directions. As the machine rotates around the tomography pinpoints where the emissions are coming from. The isotope is short-lived and rather expensive. An appropriate molecule is used which is taken up by certain cancers. The location of these molecules can be observed on the scan. In order to qualify for some clinical trials they require a cancer that can be measured so that at the end of the trial the amount of benefit can then be measured.

Man #6 described how some glands swell and block the lymph system. You then get a build up of fluid which is called lymphedema. This can also happen when the lymph nodes are removed. Man #3 commented that he had lymphedema following his prostatectomy. He now wears an elastic stocking on his leg. Many women following a mastectomy wear an elastic sleeve on their arm for this reason. You must be very careful to protect the affected limb from infection.

Man #2 worried that some doctors generalise too much instead of thinking carefully about the individual patient. As an example he said that individual cases might benefit from strong radiation to a single bone metastasis to knock back an identifiable cancer and hence buy additional time for the patient, rather than the standard metastatic treatment. Newer radiation equipment can more accurately target a cancer with minimal damage to surrounding tissue. One treatment which can help identify cancer in the lymph nodes is Ferriheme when used with MRI.

Man #7 commented that side effects from surgery or radiotherapy or hormone therapy such as erectile dysfunction and incontinence become serious in only 3% to 5% of men.

Jim Marshall gave a reminder that Dr David Grimes a medical oncologist will be giving a talk at the next Brisbane support group meeting.

Man #6 recommends seeing a medical oncologist when your initial treatment has failed or you are diagnosed with advanced disease. If your urologist has you on androgen deprivation therapy (ADT) then a medical oncologist may be able to help with side effects etc.

Man #7 commented that he has had radiation plus has been on ADT before and after the radiation and will stay on the radiation for 3 years continuously. In addition he has taken bicalutamide (Cosudex®) the whole time not just a few weeks at the start.

Man #8 mentioned that he has had two opinions that giving your body a break from hormone therapy can be a good idea. His PSA is down to 0.08 and he plans to go off leuprolide (Eligard®) infusions until his PSA rises to about 6. He plans to stay on bicalutamide (Cosudex®) during this time though.

He also mentioned that after many years of incontinence he had a sling fitted in January. This has seen a large improvement but he is still getting lumps of blood being passed. He cautions men who have had radiation about having a sling fitted. An artificial sphincter is another alternative.

Man #3 commented that it seems Australia is the only country in which a urologist often continues to treat patients after surgery has failed. Man #2 agreed but thought that that might be because of the huge shortage of medical oncologists in Australia. However, he also recommended that once the cancer is beyond the plumbing stage you should attempt to see a medical oncologist particularly if you are on ADT for an extended period.

Man #6 informed the group that he is trying to get PCFA to develop and print a booklet on ADT that doctors can hand out to their patients at the start of ADT.

Man #9 mentioned that he was going to participate in a supervised exercise program being run by Kate Bolam at the University of Queensland. The program runs for 6 weeks commencing 24th and 26th of April and has vacancies.

Man #10 said that he came off 2 years of ADT in January 2011 and was on oral bisphosphonates. Osteonecrosis of the jaw (ONJ) is a concern with bisphosphonates especially with teeth extractions. Osteo means bone and necrosis is cell death so that some of your bone is dying or dead. Bisphosphonates are anti-resorptive agents meaning that they help prevent old bone being absorbed. The result is that you have thicker bone but it is old bone and likely not as strong as new bone.

With the intravenous such as zoledronic acid (Zometa®, Aclista®) or denosumab (Xgeva® and Prolia®) there is a small risk of ONJ but it is very rare with under 2 years of use.

For the tablets such as alendronate (Alendronate®, Fosamax®, Alendro®, Alendrobell®, Ossmax®, Adronat®) also risedronate (Risedronate® Actonel®, Acris®. Risedro®) the risk of ONJ is very small and is very rare with under 3 years of use.

There are a number of other bisphosphonates such as strontium ranelate (Protos®) that is meant for women with bad osteoporosis. Another is sodium clodronate (Bonefos®) for women with breast cancer. There are still more for Paget’s disease and multiple myeloma.

A dental extraction which then does not heal properly is the main reason ONJ is reported and this is 73% of cases. Bisphosphonates can get buried inside bone and remain active for up to 10 years.

Man #2 said that he is taking 1 calcium tablet plus 2 vitamin D capsules daily. This was arrived at by his doctor testing his calcium and vitamin D regularly and adjusting his intake so that the tests showed that he is in the top half of the healthy range.

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