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Minutes of Advanced Prostate Cancer phone-in meeting 1 February 2013


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These Minutes of the Teleconference are general in nature and not meant as advice. You must consult with Health Professionals for advice.


Apologies from –


David Abrahams Donating blood at the PA Hospital for research. This is an attempt to find an alternative test to the PSA test.


Geoff Buttfield work commitments.


Donald and Barbara McKay due to family wedding and work. They send their best wishes to everyone.


DT- Hospital Treatment this morning.


Euan Perry Other meeting commitments


Jim Marshall The house was made electrically safe today. Early tomorrow morning new tarpaulins will be fitted to the roof. That will be followed by the insurance assessors deciding on the extent of the new damage. Around 11 AM the asbestos assessors will visit. Hopefully they will give us the all clear. But we cannot move into the house until we have power and the street is still without power. That, together with the fact that I have no suitable telephone that I can hold for more than a few minutes, means I will be unlikely to take much part in tomorrow's meeting. All the best to you and all those who sail with you.


Chairman Bruce - Happy New Year such as it is with all the floods. We are here and we can be thankful for that because a positive outlook is always a good thing.


I have sent a clip, to all group leaders, by Jill Margo who writes for the AFR. She is talking about the controversy over whether to treat or not to treat those who have a rising PSA. The other thing she introduced was the fact that Suzanne Chambers book is about to be released. Some of you may have heard of Suzanne Chambers, she is a Nurse by primary training, she is a psychologist and she is now Professor of Psycho-oncology at Griffith University. She has been a leader in research when she was with the cancer council with people after prostate cancer treatment and some of you may have been in her trials. She is highly respected.


Man #12 - first time joining the teleconference. I was first diagnosed with a PSA of 26. I had radiation in 2001. I travelled along with low readings. In 2010 it started to go up. I went on Lucrin and with a holiday of just a few months I have been on Lucrin and l am on Lucrin now. The PSA started to rise sharply early last year while I was on the Lucrin. I went on to Cosudex just three or four months ago and before I went onto the Cosudex my last reading was 17 and yesterday I saw the oncologist for the first time I am moving over from my urologist and it was 2.9. This was very good news. I will continue with the Lucrin and the Cosudex. I don’t have any observable negative side effects from either of them. I can travel along cheerfully on that regime for as long as it will last. I am 80 in April.


Chairman Bruce – You are off to a good start. Welcome to our group.


Man #12- There is a spot on a vertebrae and one on my pelvis. I will check on them before I see the oncologist again.


Man #5 - If you are on the Lucrin and the Cosudex for an extended period of time make sure you get a bone density test done if you are not already doing that.


Man #12 - Thank you for that. I did. I started off with a very good level apparently and slight deterioration particularly in the vertebrae. I will keep that under review.


Chairman Bruce - Androgen Deprivation therapy normally starts to fiddle around with muscle strength, your metabolism in general so an exercise program is a good idea.


Is there anybody with breaking news?


Man #16 - My PSA I found out the other day went up to 41 from 14. So I guess I am getting a little bit closer to chemotherapy. I have had one injection of Denosumab / Xgeva. I am having that every six weeks. I must ask them why is it six weeks when on the literature I have it recommends it every four weeks. Would anyone else have any ideas on frequency of Denosumab?


Man #15 – I am getting Denosumab / Xgeva every month. I have had about three doses of that so far. I am surprised to hear that you are on a regime longer than that. That is for toughening up the bone.


Man #13 - As I understand it a bone protective or dealing with metastasises to the bone as a reaction to a rising PSA . Is there any radiographic confirmation that you have a bone issue or metastasis?


Man #15 - I have had a bone scan and it has showed up some in my vertebrae T6 and T7. I have had some radiation on that and it seems to be controlling it fairly well.


Man #13 - Spot radiation can quite effective I believe.


Man #15 - I am still on the Denosumab and also on the Cortisol (Hydrocortisone) too because the Cortisol level drops because of the Denosumab. I am also on tablets called Ketoconazole / Nizoral.


Man #12 - May I ask a question about spot radiation? The possibility of damage on the vertebrae would be more likely than my spot on the pelvis? Any comment on the nature of and the likelihood of any damage from that if and when I was to contemplate that.


Man #15 – I asked this question of my oncologist when I started it and he seemed to think there was very little risk of damage to the vertebrae.


Chairman Bruce - as a retired radiation-oncologist most radiation-oncologists would be cautious about using an excessive dose that would damage your spinal cord. The usual dose to suppress activity in the vertebrae of a metastasis used to stop it from softening the bone. That is the same reason as using the anti-suppressant materials such as you just mentioned Denosumab. They interfere with the cells in the bone that actually remodel the bone, the osteoblasts stop those. Maintains strength in the vertebrae, if the spinal cord gets pressure your legs won’t like that. The dose may be repeated but it cannot be repeated indefinitely. It is a strengthening move. It is safe in the hands of most radiation-oncologist.


Man #5 to Man #15 are you on or have you been on any hormone treatment?


Man #15 – Yes, I am on Firmagon / Degarelix I went to Zoladex and now I am back on Firmagon.


Man #13 - My understanding is that Estradiol is kinder on the side effects, other than your breasts they are more prone to enlargement and tenderness. About half of people will respond favourably to a one off radiation of the breasts and the other half don’t. That is something you could discuss with your radio-oncologist.


Man #15 - The main reason why I changed was because I was going on holidays for an extended period and the Firmagon is on a three monthly basis. Where the Zoladex was on a monthly basis.


Man #13 - You can have Zoladex 10.8 which is a three monthly depot. Keep an eye on it and see what the PSA responds to best particularly the rate of change of the PSA. Go on with the one working best for you.


Man #15 – was asked if he had been on Zoladex previously? Yes I was. I started on Zoladex which was prescribed by my urologist. Then when I went to an oncologist and he put me on Firmagon. I had tried Cosudex as well. He stopped that.


Man #13 – Typically Cosudex is there as an anti-androgen it prevents testosterone appearing within the prostate cells.


Man #15 – I have had the prostate out.


Man #13 – It is the metastatic ones you are looking at unfortunately. The traditional treatment would be to possibly start off with Firmagon. There are two school of thoughts as to whether you start with that or not, reasonably persuasive.


Man #15 - I started with that.


Man #13 - If that is effective then switch to Zoladex with or subsequently adding Cosudex to that, typically using the two together. Dr Snuffy Myers is advocating it. Various pathways if you tackle them simultaneously you do better than just trying to hit one pathway at a time.


Man #5 - I have been on Lucrin three monthly for the past ten years and when that started to fail they added Cosudex. I got some benefit out of that and that sort of dribbled away so more recently they took me off the Cosudex and remained me on the LucrIn. Added another anti-androgen called Nilutamide. It seems to be giving me some benefit at the moment my PSA is still going up a bit but it is going up very slowly. The difficulty is it is different for each individual. You can’t translate from one person to another unfortunately.


Man #13 – Man #15 is using Nizoral / Ketoconazole, are you having any side effects?


Man #15 – I am not too sure what is causing it but the main trouble I have got is my bowel function is very erratic. I am getting a lot of gas build up and constipation. I am not too sure if it is from the Nizoral or not.


Man #13 – You could discuss it with your doctor what they call a high dose and a low dose and they each have their own adherents. The main thing to be watching there is for your liver tests. Things like GGT, AST, ALP, keep an eye on those sorts of things


Man #4 - Question directed to Man #5. The one of the members I know are on Nilutamide and he has trouble when he comes in from out in the sun into the shaded area it takes his eyes a while to adjust. Do you have that side effect?


Man #5 - Yes I do. It is not a particularly strong side effect but it is definitely there. I was warned about it by my oncologist before he put me on it but it goes pretty quickly in a minute or two. Commercial name is (Anandron or Nilandron)


Man #16 - I was on that for a while but they have taken me off it now. They mentioned to me to wear sunglasses outside to help reduce the effect.


Man #5 – Anandron is an anti-androgen that they aid to the main hormone treatment. I am on Lucrin at the moment. Then you can add various anti-androgen they usually try Cosudex first. Nilutamide is the other readily available one they are trying. Of course there are all these new ones they are running clinical trials on which is falling into that classification as well.


Man #16 - I was on Nilutamide


Man #5 – that is the one I am on.


Chairman Bruce – the situation is as you age your retinal capacity to dark adapt as it is called gets less and less. At my age (80) I have a pair of polaroids at my front and back doors so if I venture outside I have a pair of polaroids. I have to do this because when I come inside I cannot read the paper of a morning unless I have had my polaroids on when I have gone to pick it up. Otherwise I have to wait a couple of minutes for the back of my eye to regain its reduce light capacity. Remember to wear your sunnies.


Man #16 – I found I had the experience of light being pinkish. There were very few other colours amongst it.


Man #13 - I was just looking at Nilutamide side effects. They are saying something like 57% of people on Nilutamide have reported ocular side effects. Impaired adaption to dark is the most prevalent. Abnormal vision and alterations in colour vision are also not uncommon. If you are on Nilutamide it is almost to be expected to but it doesn’t necessarily remain permanent though. (Light tends to be pink) it must be hitting the cones that pick up colour vision and hitting the green ones more savagely than the red ones.


Man #15 - I was just wondering if anyone had heard what the latest is on getting Abiraterone/Zytiga onto the PBS list?


Man #13 – I have not actually heard but I have been into the PBAC website on a few occasions and there is no news from their November meeting which was specifically for post chemo use of Abiraterone/Zytiga. Since then pre chemo use of Abiraterone/Zytiga has been approved in Europe prior to that it was already approved for pre chemo use in the United States. We are getting a bit behind on the eight ball.


Man #15 - I remember sending a letter in which Jim set up some time ago, three months ago.


Man #13 – Did you get any acknowledgment? I did not get any acknowledgment of mine.


Man #15 - Yes I did.


Man #5 – I didn’t get acknowledgment of mine either. My understanding is that the PBS Committee has made a recommendation which we were a little uncertain about when it first came out. I think on balance it is probably positive but I don’t believe it has yet gone before the cabinet to get the political rubber stamp or objection. We are waiting on that as far as I am aware. I would also agree with Alan that we are a bit behind with the overseas people in terms of approval of these things. In Australia it is only post chemo as far as I am aware of at this stage.


Man #13 - I have been using Abiraterone/Zytiga for the last three months which is for pre chemo use. I am not quite sure by which scheme I got access to this but I have a very helpful oncologist he said ‘I think I can do something here’. It just turned up in the post. He just mails it and he has done so ever since. Next time I see him for results I will be interested to know what the mechanism was. I have had only one real result and it seems to have produced a plateauing but not yet a reduction but that’s after one month only. Time will tell. It is being used in conjunction with Zoladex. I tried switching from Zoladex which had appeared to have run out of steam to a different product, Degarelix (Firmagon) which works slightly differently it is antagonist rather than agonist the way it operates and that appeared to be ineffective. It didn’t have any effect on PSA so I am switching back to Zoladex. Even though by itself or in conjunction with Cosudex wasn’t doing much, in conjunction with Abiraterone/Zytiga is rather more hopeful. I would say there is some indication of that will be the way it works. It is not an instant plunging of PSA. The moment on test one it is a plateau. I will let you know what happens.


Chairman Bruce - If the good news come through to the PCFA the CEO would have it come down the line. At the moment we are just waiting. We may read about it in the newspaper and find out that way. If it comes out we will make sure people will get to know.


Man #13 - you have to be a bit careful with food it has got to be taken at least two hours after food. No less than an hour before any food following. You have to avoid things like grapefruit juice. It is a bit fiddly but not too much of an imposition.


Man #16 – I did read that if Abiraterone/Zytiga was taken with food it increases the bodies uptake of it and you end up with too much in your system.


Man #13 – you take four tablets at once it is a gram of medication all in one go. You probably need to be a bit careful that it did not become bioavailable too soon or too quickly. No side effects so far.


Man #5 - I am having the next PSA test later on today. I am seeing the oncologist in a week and a half. He did mention at my last visit that there may be a new MDV3100 trial which is another new drugs clinical trial coming on soon. The present one is for people after chemotherapy and then they ran one for people prior to chemotherapy. The qualification was for a rising PSA but also had to have identifiable metastases. I did not qualify for that because I did not have identifiable metastases. There is a possibility they may have a new trial which I hope to find out about when I see my oncologist. I have not seen anything on the web as yet with the MDV3100 pre chemotherapy and without the need to have metastases identified. The earlier that these trials are running in the disease process the more expensive and the longer it is for the chemical company to wait for a result. There are financial pressures on them not to go too early and that may be a problem for this one as well. I will be interested to find out I will let everybody know at the next meeting whatever I do find out about it.


Man #13 - Xtandi is the trade name for Enzalutamide or MDV3100. I think it is approved for post chemo use in the United States now. I am not sure about pre chemo. I think I have just seen trial results which are positive. I don’t know if the FDA has approved it yet.


Man #5 – Yes, I think that is right.


Chairman Bruce - So I believe the identifiable metastases that Man #5 mentioned as a requirement for the trial means there is a yard stick by which they can check on responses which means you can measure the response earlier. It was thought at one stage the counting of malignant cells circulating in the blood might be a yard stick. I have not heard anything more along those lines.


Man #18 - I am currently on chemotherapy. I have for the last six months at the Mater Hospital in Brisbane under the direction of Dr Paul Mainwaring. I have had about 22 shots. I am suffering now with my fingernails all dropping off and my toenails dropping off. Has anyone else had this problem? My hair dropped off a long time ago.


Chairman Bruce - Nails and hair all belong to each other. Nails normally have a grip on you. It is unusual for people to have their nails drop off. I am not modern in terms of chemotherapy to that extent.


Man #18 – Taxotere / Docetaxel. Twelve months ago my PSA reading was 200. Just yesterday it was down to 46. The hospital says that one in 150 will get it and you just have to deal with it. The other side effects I am getting is that the arches in my feet have been very sore, just like you have a spur in them. They insure me it is not a spur. It is the nerves in my foot. Some days I can hardly walk on my feet.


Chairman Bruce - How about the palms of your hands? Is your skin thinning down? If the skin thins down on the soles of your feet you feel the surfaces. The thickness of your skin maybe making it a bit tender. Don’t quote me as being correct it is just a theory.


Man #18 - I have only got to bump my wrist, elbow or arm and it bruises straight away. If I bump it too hard it will bleed.


Man #15 - Are you on blood thinners as well?


Man #18 - No. I was on just aspirin and they took me off it about six months ago. They said I didn’t need it because everything else checked out so well. No fluid retention, everything else is fine, my bone density checks. I have to go and see the hospital today and have some more poison.


Man #13 - They do say the side effects from it can include fingernails and toenails changes. It is one of the expected side effects.


Man #18 - The lack of knowledge you get from these people sometimes. I rang them up when all of this puss was coming out from underneath my nails and badly infected. They said to go and see my GP and get some antibiotics. I went and got some antibiotics and then went back and got some more. It didn’t stop it and my nails were absolutely terrible. Now they are hollow with nothing there. When I spoke to the hospital they said whatever I take for it is not going to fix it, the Taxotere / Docetaxel is just tearing into your nerves system and it is decaying underneath the nails and this is just what happens. I am on Zoladex every three months and Taxotere / Docetaxel. Every week I am having that now.


Man #11 - I have a friend and I am not sure what chemotherapy he had after the prostatectomy and then his PSA shot up. He complained of a lot of nerve damage in his legs and feet. I think it lead to loss of sensation which was fairly permanent.


Man #13 - One of the side effects with nails I remember Dr Stephen Strum (USA) saying before the infusion of Taxotere / Docetaxel you should have to protect your nails they should be in frozen gloves or ice water during the course and prior to during the infusion which shouldn’t be too rapid either. It shouldn’t be less than 15 minutes if I remember correctly. It would have been nice if the people administering the drug could have told you this at the beginning, specifically this to protect your nails.


Man #18 - From the beginning they said to use nail hardener. I put it on every day and then took it off at night. Half way through they said you are supposed to use these gloves out of the freezer. When I put them on it must have been too late. I still use the frozen gloves. They leave it on the whole hour.


Chairman Bruce – While you’ve got the problem of no nails perhaps using protective gloves something to keep your hands a little protected from injury because you have lost the surface on your nail bed. The idea of the ice water treatment when you are having your therapy goes back into the early days of chemotherapy and those agents that used to cause hair loss the use of a compression band around the forehead to the back of the head to stop some of the blood flow getting to the top of your head while the infusion is on reducing the drug effect there. Hoping that there weren’t any malignant cells in that area. It was the practice for a while to help protect against hair loss off the head. So the ice water and the fingers/hands in it while your therapy is on is a very good idea.


Man #13 - Looking at this it appears some people have had complete recovery of their nails. Another issue was they visited a podiatrist and used an anti-fungal/bacterial gel for treatment because the area was pussy and a breeding ground for bacteria. May be it is worth having a chat with a podiatrist while the infusions are still progressing.


Man #5 – I will just raise given that we have just started talking about chemotherapy and alike. I have been getting more involved with the consumer rep on various prostate cancer research projects. One the ones that I have been involved with is one that is being conducted by a professor at one the major Sydney hospitals who is also a professor at the research institute here in Sydney. This lady is very switched on and intelligent and with a very powerful research team associated with her. The research project involves the evaluation of trying to improve the response rate to chemotherapy for guys with prostate cancer. At the moment only about 50% of guys get a substantial effect or benefit apart from the side effects side of it that we’ve heard about this morning. About 50% only get a small effect or don’t get any benefits at all. This comes back to the personalised nature of the disease, genetics and all the rest of it.


The aim of this project I am involved with is ideally to improve the response rate from chemotherapy from 50% to 100%. By utilising a variety of techniques and methodology which may also give some benefits down the track but it is going to take a while to do all this. It is not going to be something available very shortly.


Professor Lisa Horvath and I met earlier this month and we have pretty much set in stone the fact that she will attend as a visitor at our March meeting and give a quick talk on that project. She is also the head of medical oncology at the Royal Prince Alfred Hospital in Sydney. She is well versed in all the medical oncology stuff, chemotherapy in particular. I don’t have the final sign off yet but it is looking fairly positive at the moment that she will be at our March meeting. It could be interesting for those who are involved with chemotherapy.


Chairman Bruce – Professor Lisa Horvath is a member or the PCFA research committee and as a consumer rep I met her and she is a knowledgeable lady.


Man #5 - Asks Man #7 how he is getting on seeing specialists?


Man #7 - Everything is going pretty good. The effects of the Androcur have worn off. I am back to being as logical as I can be so all going well at present. Everything pretty much works like it should. I don’t go back to the oncologist until early in March. My PSA went down to 3.2. It was down in a good range. When it was down there I had another Lucrin injection so we just see what happens by March.


Man #5 - Sounds like the Lucrin is working then?


Man #7 - It had gone from 15 down to the 3.2 before I had the Lucrin injection. I had some Cosudex that I took and when I ran out of that I went to see the oncologist about more Cosudex and he wouldn’t give me any more. He told me that he wanted me to have the Androcur. I told him that I had Androcur before and that it played up bad with my depression and all these sorts of things and he said I want you to take it. He wanted me to take two a day and I took one a day and it played up with me something terrible.


Man #13 - I think that is not too unusual of a story. It is not licensed for use in the US for that reason. They still use it in Europe. When you see your oncologist in Cairns you may want to question that with him. It is not used in the US because of those sorts of side effects. It can be prescribed in Europe and Australia.


Man #7 - Until after I had been to him I didn’t realise that I could have just gone to my GP and asked to get the Cosudex. I thought I had to go to the oncologist to get another script.


Man #13 - I think the doctor has to be registered to be able to prescribe it and he has to get permission to do it. I would not put up with all those side effects if they are knocking you about. Cosudex would be a better option by the sounds of it. You need to talk to the doctor about that or talk to a doctor you can talk to.


Man #5 - Let me tell you, Androcur it is still being used in Sydney as well, and sometimes by urologists. We had an emergency call from a guy a couple of weeks ago who was virtually suicidal from it. He was a Vietnam veteran with a history of depression and they prescribed him this and he was crawling up the walls with the side effects. It was having a horrible effect on him. I think it affects a high proportion of people.


Man #13 - My brother has prostate cancer and he has been prescribed Androcur as a precursor to Brachytherapy with the radioactive seeds in order to shrink the prostate a bit. He is not having any side effects. It does not affect everybody adversely.


Man #7 - I rode my push bike up to the Post Office and when I got there I just stopped but didn’t bother to put my feet down to stop myself from falling over. I do silly things like that when I am on it. Happy New Year to all of you and hope everything goes good with your cancer.


Man #4 - I think it was Alan that mentioned ALP, one of the tests earlier in the teleconference today. Clem Foreman is on Abiraterone/Zytiga and he hasn’t been on for the last couple of months and he has talked about ALP. That is a test I have done. Thanks to Man #6 from his advice I get a lot more blood tests done now than earlier in the process. When I get a blood test done every three months now I get 47 different results and ALP is one of those. They really are all necessary I think. Different kidney functions. Different liver functions. There are not that many different items on the pathology request form. All that is on mine is B12, FBC, PSA, ELFTS, Testosterone, Vitamin D and Foliate. I end up with 47 different results just with those few items on a pathology request form. It is really interesting over a period of time you build up quite a record when you keep all those different test results. The likes of Vitamin D a lot of men don’t have done. It is a fairly important test as well.


Chairman Bruce – ALP – Alkaline Phosphatase is a common test. It doesn’t have much relevance in prostate cancer in terms of bone metastases as acid phosphatase. Prosthetic acid phosphatay the last laboratory doing the test was QML in QLD and they gave it up. Dr Stephen Strum (USA) said it had prognostic significance and he mentioned it at the First International Conference on the Gold Coast. I haven’t heard about for years because it was the yard stick that I used before PSA come in. He had proof it was still a good test because of three fairly recent journal papers. Alkaline phosphatase will be raised by bone disease but it dosn’t specify like the acid phosphatays, prostate cancer will be the only one that will push that up.


Man #13 - There is a test that can be done if you are concerned about bone turn over. There are two tests worth looking at. First one – Bone Specific Alkaline Phosphatay’s, you have to distinguish it from the liver enzymes. Second one – keeps a close eye on calcium. Third one – NTX which is the marker for bone turn over and another one called CTX which is the Carbon or Nitrogen Telopeptide both of them are commonly used as markers in clinical trials. I keep a close eye on NTX, calcium as well as bone density. Look at tracking those fairly closely the longer I go into all of this. You do need to look after your bones that is for sure and Vitamin D is part of that.


Man #16 - I am just wondering about bone density tests. Whenever I go to see the specialist at the hospital they always weigh me. I remain pretty much the same weight. I was just wondering if that is a reasonable way of find out whether you are losing bone density.


Man #5 - I don’t think that would have any relevance to bone density.


Man #13 - I think when you are talking about density you are looking at porosity and in a few specific places and I am sure you wouldn’t have enough sensitivity to pick it up on a set of bathroom scales.


Man #4 - I have a bone density test every 13 months because to get a free one it has to be a bit over 12 months and because you are on hormone therapy you are eligible for one. It doesn’t take long to have one and it gives you a graph and it tells you exactly where you are going. I think it is imperative when you are on long term treatment that we are on.


Man #13 - Have you found any random error?. I have noticed tracking them that the written results tend to not be all that consistent. There’s a fair amount of random error which seems to me that they wouldn’t want to take two consecutive results to seriously.


Man #4 - I have only been on Eligard for two years in April. I have only had two tests. There hasn’t been too much drama. The last one wasn’t as great as the first one.


Man #13 – Don’t lose too much sleep over it. Just by judging the results the way I see it all looks fairly precise and accurate but I am not sure if it is as good as it sometimes claims to be in terms of precision.


Man #4 - I am on a Vitamin D tablet because I got down to, the test was showing 58. I started taking one Vitamin D tablet and it got up to 91-92. Then I started taking two and it got up to 131 so they told me to get back onto one. If it gets too high it is an issue as well as being too low.


Man #5 - Just on the bone density the newer machines seem to take less time to do the test. I have been having one a year or just over a year for about the last nine years at the moment. Basically I think that the numbers, I don’t know what the numbers exactly mean, but they do tend to jump around a bit over that time period. Mine has luckily been pretty steady and reasonable not too low. My endocrinologist has said we don’t need to do another one for two years. I have been going for so long that there is a reasonable degree of confidence nothing dramatic is going to happen too quickly. As far as Vitamin D is concerned you should try and keep your Vitamin D towards the higher end of the normal range. In my situation I tend to get a bit of sun outside but it doesn’t give me as much as I need. I am on 2 x 1000 units of tablets a day. That has gotten me up to just above mid-range. I take a calcium tablet each day as well. I went on the one with 400-500 units of the Vitamin D on the surface of it and that got me up to the high end of the range. On top of the 2 x 1000 units I take each day. Talk to your doctors about it. Don’t go over the upper limit. That could cause problems I gather. Try and get your Vitamin D up in the top half of the normal range.


Man #13 - The full formulated calcium is probably the better option than the straight calcium carbonate. A little bit of strontium, magnesium all these things are co-factors with calcium and bones. A little bit of boron and the Vitamin D of course.


Man #5 - I have switched back to using the fully formulated one. Mainly to get the Vitamin D right to the upper half rather than take another 1000 units. There are probably other little bits and pieces in there that will also help.


Man #7 - I have just had a look at my next pathology request and the only thing they want is PSA. Should I ask for them to have other tests? That’s all the oncologist in Cairns ever puts on.


Man #4 - You should have been having testosterone tests for years.


Man #5 - Most doctors in Australia don’t ask for testosterone tests. I agree it should be done. The other mechanism Jim is you can ask your GP to specify some tests as well.


Man #12 – The purpose of getting the testosterone is if your testosterone is up it means that hormone is not working well enough, is that right, I want to keep it down?


Man #13 – Exactly right. What is the point at looking a static PSA and worrying about that or a rising one when you do not know what the testosterone is doing?


Man #5 - I the think the Australian medical profession does tend to assume that if they are taking a hormone treatment it is working. Probably most of the time they are right but not necessarily every time. Speak to your GP about getting extra tests done. They can specify and write you a script for those tests and then you can compare notes with the oncologist. You do not have to wait for the oncologist to do it.


Man #4 - The other important thing is to get the oncologist or GP to print the results out to give to you so you can take them home and look at them. It is too much to try and take it all in while you are in their office. It is important to have your own record at home.


Man #13 – You can keep a time series going then and track trends which I suspect busy oncologists don’t always do. The changes you are seeing and the rate of change is as important as the individual result. It certainly helps in discussion with the doctors if you have that laid out in a way that is precise. I keep mine as a few graphs which gives you the long term trend and you can relate that to the various treatments. Cause and effect you can start to look at it then. You can take a bit of a handle on what works and what doesn’t. The two things I think you need to self-manage with the help of your GP are your bones and fats in your blood. Tends to increase with androgen deprivation. You can tend to put on belly fat


and your circumference past your belly button goes up and deep fat in that area is bad news. You can also track that with a normal standard cholesterol type related test which your GP will do. Thirdly would be glucose tolerance. You are looking for the onset of Type 2 Diabetes or insulin resistance. Keeping track of those three things and keeping track of your liver function which we talked about earlier. There all at risk if you have prostate cancer or are being treated for it. It is not hard to track them and if necessary take corrective action if some of them are going sideways.


Man #4 - On Dr Myers website last week he talked about cholesterol and its relation to testosterone. I would recommend that everybody go and have a look at that website and watch the video he posts every week and especially the one that was on the website last week. If you are not too inclined to diet, the statins and all the bad news that goes with them, are not true and I think that what he had there last week was really relevant to many guys in our situation. It is on Jim’s website.



Click on the blue ribbon and the Forums page comes up

On the new page there is a black bar that says 


jimjimjimjim.com SuperSearch Help Forums Members list Calendar Links Directory

Click on the Links Directory

A Categories Page will come up.

Click on the heading Sites run by medical doctors

Click on Dr Snuffy Myers (USA) video blog

It will take a few seconds to open but when it does all of Dr Myers Videos are there.

If a new video has been posted, as there is a new one nearly every week, you will need to scroll down the page.


He has a lot of relevant information and after seeing him in Brisbane and being down at the conference down the Gold Coast a couple of years ago it can’t help but fill you with positive thoughts for the future. While I don’t profess to have all the blood tests that need to be done it is conversations like what we have here that we all get more knowledge and simple things like putting your fingers in cold water before chemotherapy. I had read about it sometime ago but I had forgotten about it until Alan mentioned it today. I think it is all very helpful for us as some of you guys are pioneers and the rest of us are very grateful that you are passing on the information to us for the future.


Man #13 - Cholesterol is the starting point for a series of steps that when the human body leads to a number of things one of which is testosterone. If you do not have excessive amounts of cholesterol floating around in your system when you are trying to knock testosterone down it seems like a pretty good idea.


Man #4 - Yes, that is what Snuffy Myers is saying in the video if you do not want to change your diet get onto Statins. There are drugs you can get to help it. They have had a bit of bad press these drugs to try and help lower cholesterol. He was saying it was a little bit overdone the bad press.


Man #5 - I was on anti-cholesterol tablets for quite a number of years prior to being diagnosed with prostate cancer and I am still on them. I also heard that Celebrex the anti-inflammatory was potentially useful when I first started on them. I have been on Celebrex and StatIn for the cholesterol since I was diagnosed. I have a Gleason 8 cancer. My oncologist described it as a sleepy Gleason 8 a well behaved one. Whether that has got anything to do with these other things I am taking or not I have no idea. I am a bit loathed to change because I don’t want my sleepy Gleason 8 to convert to a nasty Gleason 8 under those circumstances.


Man #4 - When you watch the Dr Snuffy Myers video last week, and learn what had happened in a research lab with the Statin’s in a dish with the prostate cancer, I wouldn’t go off them either if I was you.


Man #5 - I am now 67 and getting a little bit of arthritis. I went off the Celebrex for a day and I certainly noticed it with the arthritis. Sometimes it is difficult to know what is causing what though. By coincidence I was diagnosed with Type 2 Diabetes at the same time that I switched away from the Cosudex and went onto Nilutamide. At that same time I started Nilutamide about a year and a half ago. I also started Metformin for the Type 2 Diabetes. Metformin has claimed to possibly have some benefit for prostate cancer. I made sure my Vitamin D was sort of up getting up the higher end. I also started taking a low dose Aspirin tablet every day. There are various reports about that may generally help with cancer to some degree. Since then I have had a very up isolating but very small movements in the PSA, generally going up a little bit but not as much as it was before. What is causing that whether it is the Nilutamide, Metformin these other bits and pieces I’ve got no idea at all. So it makes it difficult depending on the by chance of sequence you have that are changing as you take different drugs. It is often quite difficult to work out what is doing what.


Man #11 - What are your thoughts about what time of day to take various drugs and what combinations you take? When you are presented with half a dozen tablets, do you take them all at once, or at night or do you take them all at different times of the day?


Bruce - I think the answer to your question is to ask your pharmacist, he will advise you when you should take them, how to mix them or whether to have them before meals, with meals. I would suggest you ask your pharmacist


Chairman Bruce - Signs off


Man #4 - Before every one disembarks in the agenda there was to be a discussion about the next face to face meeting. Jim Marshall has suggested three dates – 9th March 2013, 13th July 2013 and 9th November 2013. It is up to you guys if you would like to have a met on the 9th March or leave it until July or what. Anybody have any thoughts about that?


Man #12- 9th March alright by me.


Man #15 - 9th March.


Man #16 - 9th March I am fine with that.


Man #14 - 9th March is okay with me.


Man #11 – Okay with me.


Man #13 – My apologies for the 9th March.


Man #5 - My apologies as well.


Man #4 - Held at the Greenbank RSL. Same deal as last time.


Note: The teleconference line may remain open for another half an hour or so to enable informal discussions.


These Minutes of the Teleconference are general in nature and not meant as advice. You must consult with Health Professionals for advice.
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