Minutes of Advanced Prostate Cancer phone-in 26 October 2012

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Minutes prepared by Secretary Nev Black!

Chairman Bruce – Welcome all. We have an observer, who may speak if he wishes, from Western Australia. They are thinking about starting up a similar group and I thought it would be a pity if we could not hear for him.

Jim Marshall- Allan Sudholz from WA has joined us today.

Chairman Bruce – Thanks Jim for that. It is pleasing to hear of the generosity of Ipswich and Toowoomba. The result is we are going to have an honorary treasurer and thank you to Alan Barlee for standing up for that position.

Apologies from – David Abraham, Paul Hobson, Geoff Buttfield.

Jim Marshall – I haven’t had the chance to publicly thank Euan Perry since he had to resign as our Secretary. Euan has been absolutely core to what we have done here. Before we even started he was an inspiration to me and to others by handing out details of accounts of what happens as you go through the sort of treatment he and I had. I saw from that how men can be very easily helped by other men giving an account of what they have done. The genesis of the group was with Tony Maxwell and I meeting on the Gold Coast. We started an email list for men in need of help and men who might be able to help us.

Euan was there right from the start. The next big step was a year later when PCFA got involved where Bruce Kynaston and Daryl Hyland had been working towards doing things for advanced men and Euan took me along to a meeting where they were talking about that and that is how we got our next big step, 15 members to 30 members and having a teleconference. Euan became our secretary. The biggest number of hits on our website has always been from Euan's minutes. I want to say publicly, it has been a wonderful inspiration help to everybody involved in this group, thanks very much Euan.

Group – Hear, hear!

Chairman Bruce – Great appreciation for your talents, thank you Euan.

Euan Perry – thanks the group. I am happy to talk about the change of focus for me. I went to hospital with serious heart problems. Whilst there they re-checked my PSA it was still undetectable.

Now I have a whole new area of the medical world to learn about and essentially this is a change of focus. At this point my heart seems more to be a threat to me than my prostate cancer. I have been heavily involved with prostate cancer thing and I have not completely withdrawn. I realised in order to put time into the heart issues and I am finding things different in the heart world there are not support groups like there is prostate groups. The change of focus is unfortunately my world these days. I still want to keep up with what is happening in the prostate world for sure. I have had to struggle with what I was going to do and I realised that secretarial work was taking me by far the most time.

So something has to change. I realised Jim was doing such a fantastic job with the advanced group that if the minutes didn’t get done, they are not fundamental to the group. So that decision on my part made it easier to resign. Nev Black has stood up so thanks Nev. It is a lot of work I know but it does help support Jim. You are running an excellent thing Jim, and I certainly didn’t want to take anything away from it, and I am pleased nothing has been taken away as Nev has stepped up. Thanks Jim and the group for the accolades.

Man #1 – Thanks Chairman Bruce. My first introduction to prostate cancer was a PSA Test in 1996, I was 55, and the result was normal. Several years later when I was 61, I am now 71, it was up at 4.6 and six months later 5.6 so that was indicating biopsy. It showed a Gleason score of 7 which is intermediate risk. Only one of 6 core samples showing cancer, nothing on the bone scan or CT Scan, but ultimately I had a radical prostatectomy. Six (6) months later, and as is often the case, the situation was upgraded somewhat in the terms of the extent of cancer and Gleason grade.

The margins were negative although it was pretty close in one spot. I didn’t have too many long term problems with bladder control, occasionally a bit of urgency, but nothing beyond that really. The only problem was my PSA did not come down even though everything said it should have. That baffled the urologist. He didn’t seem to have an answer to that. It was obvious that there had been micro metastasis prior to the surgery.

I subsequently had an MRI on the prostate area, nothing showing. So at that stage I switched to a medical oncologist he agreed to let nature take its course for a while. I had been reading Doctor. Patrick Walsh who is one of the leading urologists in the States. His advice was not to rush into Hormone Therapy, so I didn’t, and in fact I let that go probably longer than I would had if I had my time again. It got up to just above 30 while we were monitoring it.

At that point I had a PET/CT Scan. It showed a whole string of lymph nodes around the left hand side which were active, at least the scan pinned down where they were. There was nothing showing on bone or anywhere else. That is still the case to the best of my knowledge.

Since then I have had ADT 3, which is a three pronged attack, suppressing testosterone and dehydrotestosterone which is the more active form of fuel for prostate cancer metabolism. I have been doing that intermittently without any adverse effects but now quite recently the PSA has continued to rise above two and serially in spite of the testosterone being low and with Androgen Deprivation continuing.

I am now looking at alternatives and in the short term looking at a product called Degarelix (Firmagon), which is still supressing testosterone but by a slightly different mechanism. After that I will just monitor the results, maybe switch to Estradiol Patches, and approach the thing in a different way again. All of which slows the whole treatment regime of which is buying time for Abiraterone and Enzalutamide (MDV3100) which are the two new and very exciting drugs hopefully not too far off being approved in Australia. They are certainly approved post-chemo in the US. I haven’t had any chemo and I am not in any rush to start.

Philosophically I have actively been pursuing the patient empowerment model so I keep myself informed with medical literature. I have been keeping tabs on the specialists, especially in the US, Doctor Stephen Strum, Doctor Snuffy Myers and Doctor Mark Scholz.

The symptoms I am having at the moment are little bit of hot flushes, which the Estrogen patches might help with when I get to them. No significant problems with bone density and lipids which are both metabolic syndrome and type 2 diabetes indicators. I am tracking both of those closely but nothing to be concerned about yet. I am watching my diet closely. I don’t eat red meat or much in the way of dairy, lots of green tea, tomatoes, ... all the things you’ve probably heard about. Not too much in the way of supplements. I have given away Selenium and Vitamin E based on the trial results which indicated it did not do any good. A little bit of Calcium to help with the bones and a bit of Vitamin D. I keep myself pretty actively involved in what’s going on out there in the world with community projects like landcare. I also fly micro lights, do bush walking and a few things like that and bit of expedition sailing. So that is about where I am at.

I am very pleased to join the group. I have been tracking another group run by Joel Nowak in the USA. He runs a similar group with around 500 members. I heard of Jim’s group quite recently and I was pleased with the opportunity of joining.

Thank you Chairman Bruce and thank you Jim.

Man #2 – On the trial of Abiraterone. My PSA is now down to 8 and that came down from 6000 in January. I have stayed with the plan right through. I get checked monthly and as of two weeks ago it is down to 8.2. Each check it is dropping slowly as it gets towards a lower figure. Pray Abiraterone is approved on the PBS. From my point of view it is marvellous. You take the tablets every morning, end of story. Once a month there are check-ups. When the trial is finished I am not quite sure what happens then?

There were 12 on the trial and now there are eight left. Some had their PSA go up, so they were taken off the trial. The ALP I think has a lot to do with the cancer activity in the bone. (ALP - Alkaline Phosphatase - tissue with high amounts of ALP include – liver, bile ducts and bone) I have bone metastasis and it is dropping also. It is almost back to within the normal parameters.

Man #3 – We are all happy to hear that. For those who do not know Man #2’s story he has had prostate cancer for 17 years and quite a large number of doses of Docetaxel and lots of other treatment. Man #2 might be interested to know in the first trials they ran in the USA of Abiraterone there are still some men alive on Abiraterone eight years later.

Man #1 – asks Man #2 if he was on pre-chemo or post- chemo trial?

Man #2 – post-chemo is one of the qualifications.

MAN #4 - is 63 years old and diagnosed with prostate cancer in February this year and prior to that his health was pretty good generally. One day he got out of bed in late January and fell. He thought it was low blood pressure. He went to his GP and gave him a lot of tests. Everything came back normal except the PSA it was at 33 and that was quite a shock.

MAN #4- Said, my previous PSA test was approximately three and a half years ago and it was 1.7. I was asked immediately to see a Urologist and he arranged a biopsy. There were 12 samples. Six of them proved positive and the Gleason score was 9. I had scans, and with the scans, everything was clear except it looked like the lymph nodes were swollen. I was put on Androcur for about a month while waiting to discuss and I also consulted a second opinion.

I was told by both specialists that if the cancer has spread to the lymph nodes the usual treatment is to go straight to ADT and not to consider local treatment. However, if I wish to pursue local treatment the surgeon would certainly do it for me.

It was also explained to do local treatment, via Radio Treatment, and that is one of the things I would like to ask any members that have perhaps been in my position. What position you took?

In March I was given an ADT injection of Lucrin (Leuprorelin acetate) and that was followed up in July with another injection. Each injection is to last about three to four months. Following these my response was good. The PSA is down to 0.15. The scan has shown that apparently the lymph nodes have shrunken. I started to look at the US literature where they would recommend even if the cancer had spread to the lymph nodes they would still recommend local treatment either by surgery or radio treatment before getting on to ADT.

Physically I am reasonably well, so far there are some side effects but not too bad. Emotionally I try to keep feeling in a positive frame of mind. I would like to ask other members, particularly those who have had a high Gleason Score, if in your cases the cancer had spread to your lymph nodes did you choose (1) Surgery or did you choose (2) Radio Treatment or (3) you went directly to ADT?

The next question is did any members experience much light headiness, like vertigo or dizziness?

Chairman Bruce - I think you have given a good description of your situation and you are approaching it extremely intelligently. You ask good questions.

Man #10 – I am in similar situation to MAN #4- . My Gleason score was 9 with aggressive cancer in the lymph nodes and since then that has gone. I have chosen to have no chemo what so ever and no radiotherapy. My urologist told me that operating on the lymph nodes was out of the question and he would not do it. I have had no Radiation or Chemo and I am currently still on hormone treatment. My PSA at the moment is 0.10.

MAN #4 – Does this mean you did not take ADT either Man # 10?

Man #10 – I have been on ADT. Two types, Lucrin and now on Zoladex, but I have gone on to it intermittently. It is not supported well now, but currently my oncologist recommends I stay on it. However I have a lot of side effects from the treatment. I would rather have on and off treatment and take a punt.

Chairman Bruce – MAN #4- I was a radiation oncologist the medical advice I give is, ask your doctor. If you are still talking with your urologist he could give a referral to a radiation oncologist who could give you an opinion. If you really wanted to know what that sort of person thought about Radiotherapy or your prostate and the glands because I guess the question is, is it anywhere else that we haven’t yet found? Because you only have to have things at a microscopic level and they will cause trouble later if they exist.

MAN #4 - When I talked to my urologist and asked about radio treatment he referred me to a radiation oncologist and I was going to go for treatment in September and prior to that I was meant to get into touch with a support group like this one to hear the experiences of other fellow sufferers if I may use that term or fellow fighters in a way that may help me make up my mind and finalise that decision.

I am rather inclined to go ahead with the radio treatment. All three specialists have said to me that they recognise that it is controversial to have any local treatment now because it is not proven that any local treatment now will increase the prognosis. I have the advice from the specialist and they say there may be some benefits particularly the urologist and radiation oncologist. Both accept that there may be some benefits although the benefits have not been proven statistically.

Man #1 – asks MAN #4- Which lymph nodes are affected, and where are they? If they are confined to the pelvic region radiation is a possibility if they are not and they are also in the abdomen or chest which is my case then that is a much more difficult prospect and probably not possible without damaging nearby tissue which is what you don’t want. My suggestion would be if you are going to see a radiation oncologist or medical oncologist as assisting the urologist to me that is the appropriate level you might ask for PET/CT Scan (Positron Emission Tomography-computed tomography for better imaging). You can then make an informed decision with your oncologist as to what treatment you might have.

MAN #4 - I did have a PET - Scan and a CT Scan and the results of the scan indicated there was no suspicion of anything untoward other than the lymph nodes in the pelvic region. It is adjacent to the prostate, that was when both scans were done. The follow up three months after the first Lucrin by then the CT Scan showed that the lymph nodes had shrunk by about 20-25%, back to the normal size.

Man #3 – Firstly on the USA and on doctors in general. Some doctors may have their bias and favourites. Doctor Walsh who has already been mentioned is a top surgeon with top results. The Cleveland Clinic, also in the USA, has had top results with this. There is some research that shows that outside these very top places the results are not necessarily the same. Doctor Walsh’s bias is towards minimal interference, no ADT and the Surgery. He is the leading light in the recent decision in the US not to do wide spread PSA testing.

If you were in the USA you would probably go to Doctor Snuffy Myers he would let your prostate cancer grow a little bit because PSA has to be about two for the scans to be very successful at looking at lymph node involvement. He would send you to Sand Lake Imaging where they are very good at spotting growth in the lymph nodes. He would then send you to the radiation oncologist, Doctor D’Amico who has a great reputation for burning these things out as he did for Doctor Snuffy Myers himself.

Over here you have got to be careful of what scan you are getting. A CT Scan and a PET Scan are two different things unless it is a special machine that can do two at once. I know that is available at the Peter Mac Institute in Melbourne.

It was mentioned Monash Medical Centre also has this machine available.

Chairman Bruce – The only thing I can say MAN #4- Is that if there is a 99% probability that your disease is beyond the area that we have on paper at the moment that means that there is 1% probability that it is confined that is where the decision making could be hard. As Jim mentioned, Doctor Myers had disease in lymph nodes, and he had those controlled.

Man #3 – I forgot to mention there are tables that will tell you approximately what chances you have the cancer returning if you do have the surgery. It has been reported be as high as 40-50% with bad risk factors.

Chairman Bruce – MSKCC has them (Memorial Sloan-Kettering Cancer Centre) www.mskcc.org

Man #5 – I am very similar to MAN #4- I was diagnosed back in March this year, Gleason score 9. Biopsy was 18 out of 18 cores. My doctor told me that surgery was pretty much out of the question. His advice at that time it was beyond surgery and the only other thing I could do was ADT and Radiotherapy in one form or another. I started Radiotherapy a week ago. I am on ADT and will continue to do so for two years if it doesn’t become resistant to the ADT later on.

Man #6 – Presently on Zoladex, an injection every three months and Nilutamide tablets. The Nilutamide tablets I started on a little while ago. I am just waiting on future blood tests at the moment. My specialist suggested that I might go on to Docetaxel in the future. I have been looking in to other things before I start chemotherapy treatment. I was just wondering if the stop start of the ADT could help. I am Gleason score 9, has bone metastasis. PSA 32 then went up to 64 when the ADT started which was to be expected, then dropped down to 3.8. Then they put me on Nilutamide tablets. We are waiting to see if it goes up to 10 then we will look at chemotherapy. I am seeing a radiation oncologist and a urologist. I am looking into a medical oncologist.

Chairman Bruce – suggested Man #6 should seek out a medical oncologist in his case. There is a Multi-Disciplinary Team at the PA Hospital which could give him an expert opinion on his treatment.

Man #6 – has been there and seen a Urological Surgeon and was looking at getting a Medical Oncologist on the scene. Doctor Wood at the PA may have a trial starting up with Vitamin E.

Man #7 – I have just come off a Tasquinimod (Quinoline3 - Carboxamide Oral) trial. Mine unfortunately went from bone to lymph node as well. The Tasquinimod trial I was on showed good results for bone metastases. It had controlled my bone disease quite efficiently. If you can ask about this it is another option.

It was then suggested if you have got bone metastases and they are causing you discomfort it is quite often possible to irradiate those. A targeted radiation can nail the ones that are causing you grief so keep that in mind when you are talking to your radiation oncologist. Beyond that the ADT with high Gleason you may want to have a look at Abiraterone and or Enzalutamide (MDV3100) when they both become available and I think both of those should be on your radar.

Chairman Bruce – Estradiol patches suggested as a possible use for Man #6. This may be an option before the chemotherapy.

It is relatively free of side effects. You may get some breast tenderness but apart from that it is pretty benign. It operates quite differently from what you are currently using. You may want to talk to your medical oncologist about that.

Chairman Bruce – Breast tenderness can be avoided by a zap of radiation to the breast it doesn’t cause sunburn just sort of a slight touch to quell it down. There is a potential risk of bosoms but it doesn’t affect every one that way.

Man #8 – I have been on the Enzalutamide (marketed as Xtandi and formerly known as MDV 3100) trial. I started the trial last year and I have just come off it because my PSA has doubled in the last few months. I was on that with the Ketoconozole added extra. My medical oncologist is taking me off both of those and is starting me chemotherapy next week.

Man #7 – I have just started a Cabazitaxel trial a week and a half ago. Has only had one hit of treatment. The first week knocks you and then you start to pick back up. Cabazitaxel (Jevtana) is usually a second line drug but this trial is to see if Cabazitaxel taken first line is of any benefit. It is an open trial so you know what you are on. They are trying Cabazitaxel in two different measures, 20mgs and 25mgs or Docetaxel (Taxotere) is the other one. There are three different ones and I am on 20mgs.

Man #1 – one of the unknowns often with these treatments is what is the right sequence? Even more unknown in what kind of combinations can be used, and I think the more creative medical oncologists, when things get tricky will tend to experiment a bit with combinations. It is experimental but, when things get to the end of the standard protocols, it is often the only option. It is worth pursuing if you are in that situation or in that position. The idea of using Estrogen Patches (Estradiol Patches) for example in conjunction with as distinct from separately from. This sort of thing is an example of that but there are a number of others.

Man #9 – I saw a recent Doctor Snuffy Myers video: ( 17^th October 2012 www.askdrmyers.wordpress.com/ ) He was talking generally about using drug combinations and how they are commonly used in other diseases.

I am still on long term hormone treatment plus Nilutamide and also on Metformin for the type 2 diabetes. That seems to be holding my PSA at 10 - 11 for the last 12-18 months. I am hanging out for things like Abiraterone and all these new things as well. I would like to get onto those prior to chemotherapy if I can.

Man #7 – One thing I did was talk to my Oncologist when I read an article saying Abiraterone used before Chemo is tending to make Chemo in some cases not as effective. Was wondering if anyone had heard about that?

Man #3 – There is a study with approximately 57 men and if they had Abiraterone before Cabazitaxel or Docetaxel they didn’t do as well. Indeed anyone who didn’t respond to Abiraterone didn’t respond at all to the Taxanes. There were only eight men who didn't respond to Abiraterone and it is a small study but things have to be looked into detail but it looks like the place for Abiraterone may be after Docetaxel and may be after Cabazitaxel – more evidence is needed. It may have another role for men who wish to avoid the chemotherapy.

Man #2 – The trial he is on the participants have had to been on Docetaxel first before Abiraterone to qualify.

Jim Marshall - Book Reviews

1. Advanced Prostate Cancer: A Guide for Men and their Families (FREE)

Every man should have a copy of this book. They have an orange spine and back. They are available in email format or contact Jim for a hard copy.

2. Wellness Beyond Hormone Therapy - Doctor Mark A Moyad (2011)

Grateful to Tony Maxwell for drawing attention to this book. This book costs about $18.00 in Australia. There will be a link put on the website. If you have an E reader it is about $7.00.

This is one of the best books available today for men with prostate cancer. Doctor Mark Moyad is a professor of alternative medicine. Those men who look only at evidenced based medicine may have a warning come up on your radar when you hear the term alternative medicine. However Dr Moyad takes a hard-nosed scientific approach to his subjece. This book is to do with castrate resistant cancer and has a wonderful collection of evidence, including on alternative medicine. The book is easy to read.

Another man also suggested a look at the MSKCC website www.mskcc.org (Memorial Sloan-Kettering Cancer Centre) their section on alternative or complementary medicine.

Amazon review at the end of these minutes.

3. Beating Prostate Cancer: Hormonal Therapy and Diet - Doctor Snuffy Myers (2007)

Retails for $40.00-$50.00 from USA including postage.

Amazon review at the end of these minutes.

3. Primer on Prostate Cancer - Doctor Stephen Strum

About 10 years old this publication is available on line for about $10.00 in electronic form and can also be purchased in hard copy.

There is a lot of background research in this book.

4. Guide to Surviving Prostate Cancer - Doctor Patrick Walsh

A hard copy of this book can be purchased.

Nev Black – looking at a get together to put names to faces if anyone is interested. Details will be available shortly on the website. A number of suggestions were put forward and a Google poll for December 1^st and December 8^th at Greenbank RSL Club the likely outcome.

Jim Marshall – We had a meeting with the PCFA. We decided we would do as much as we could to get as many responses as we could. We did a video, postings and twittering. Altogether we got 400 people who came to our site. We don’t know how many went directly to the site to fill in the form. About 170 people watched the video. A number of around 130 went to the PCFA area. Some people let me know what their submission was. It was good and useful as there were quite different perspectives. That went as well as it could have. Thanks for those who could contribute.

Tony Maxwell - we are putting pressure on PCFA at the highest levels to be more proactive earlier if possible in future on these sort of advocacy things that we can contribute to. Also the makers of Abiraterone have put together ‘tomorrow counts’ promotion which has a variety of aspects to it. A group is travelling to Canberra to talk to politicians, independent of the PBAC process. If given the opportunity whilst down there I will push Abiraterone. (Good luck Tony)

Jim Marshall – Met with other groups on the Gold Coast, Ipswich and Toowoomba. I will be talking with others about the structure of the committee. There are certain things we can share in the multi group, the web, the email system, contacting and perhaps a common treasurer and secretary. Then just have conveners for each committee/group. We will also need a budget. Looking at a 1300 number at the price of a local call nationally.

Chairman Bruce – Meeting closed at 11.01am.

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

Amazon reviews

Beating Prostate Cancer: Hormonal Therapy and Diet - Doctor Snuffy Myers (2007)

www.amazon.com in a review of this book said: (Renowned prostate cancer oncologist and survivor, Doctor Charles "Snuffy" Myers breaks down the ins and outs of prostate cancer treatment for patients everywhere. Details Include: Integrating A Comprehensive Approach To Treatment; Using Hormonal Therapy Alone Or With Radiation and Surgery To Prolong Life; Comprehensive Listing Of Vitamins, Diet, & Lifestyle Recommendations; Case Histories With High PSA Reductions; Infusing Treatment With Hope. In the words of Doctor. Charles "Snuffy" Myers, "treating prostate cancer is a lot like golf because you need to play it as it lies." In this unique volume, both practical and highly accessible, Myers puts over thirty years of experience with this disease to work for the benefit of survivors everywhere. As one of the most influential physicians in the prostate cancer field today, Myers has created the most hands-on and comprehensive resource on hormonal therapy and diet on the market. As a prostate cancer survivor with an undetectable PSA, Myers infuses this book with the life-saving hope that led to his own recovery. Medical oncologist, scientist, and nutrition expert, Doctor. Charles "Snuffy" Myers was a key player in creating AZT, Suramin, Phenylacetate while working at the National Institute of Health. With over 250 research papers published, Myers is one of the leading developers of today's prostate cancer canon on both the research and treatment side of the test tube. Former Cancer Director at the University of Virginia, Myers opened the American Institute for Diseases of the Prostate in 2001 to provide men with the comprehensive care that saved his life.)

Wellness Beyond Hormone Therapy - Doctor Mark A Moyad (2011)

www.amazon.com When a patient is told that his prostate cancer has progressed to a new stage, he has both questions and concerns. Promoting Wellness Beyond Hormone Therapy is written specifically to answer questions for patients whose prostate cancer is considered "hormone-refractory," meaning that it no longer responds well to hormone therapy. The book provides a wealth of valuable resources for patients, caregivers, and health-care professionals alike.