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Minutes of the dial-in meeting of 25 September 2015 - Part 1: Jim


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Minutes of the dial-in meeting of 25 September 2015 - Part 1


Jim Marshall

Well the first thing is the conference. Paul Hobson and I attended the Prostate Cancer Research Institute (PCRI) conference in Los Angeles recently. Paul is still on his travels in the USA.


 I'll only give you a bit of a travelogue on that; all the sessions were recorded and the videos come out in about 6 weeks and I'll wait until then to make a more detailed report. My first conference was one at the Gold Coast in 2010 and the differences between that and this one are striking. In 2010 we only had Taxotere that had been approved for about 3 years and not only no other treatments available but none on the horizon. Now are I think there are about 5 or 6 treatments approved in Australia and others on the horizon in Australia and others on the horizon overseas. So speaking to ordinary guys with advanced prostate cancer, their aim is often stated as staying alive with whatever treatment they're on now until the next good one comes around. The best possibilities are in immunotherapies. There is only one immunotherapy available in the world at the moment and that's only available in the United States. But one of the researchers reported on the basic science of the immune system and the experiments they have been doing and they are looking at the molecular level. There are three main parts you can hit that affect the immune system and two of the main treatments available now target two of these and one that targets the third may be available in the near future.


They use two different targets, but in the lab they tried these two targets separately, and then they tried a combination. The combination was phenomenally strong, so it looks like if they can get the drugs that target the immune system it will be a very powerful treatment. 


The other thing about the immune system is they've discovered from other cancers that any challenge to the immune system gets the immune system working harder against all things that it needs to attack. So what they are doing now before they give the immune system the treatment that is currently available in the United States (Provenge), is they're challenging the immune system by giving vaccines. So they will give somebody a vaccine against the flu or pneumonia or tetanus, and from the lab work that was shown that would give a much, much stronger reaction and so one of the informal recommendations from one of the great doctors there - I say informal as it's  not based on solid science – but it's  the sort of thing you might do because it doesn’t seem that harmful and it will probably help - was that men who have prostate cancer should think about getting every vaccination and that may help their immune system in it's  fight with the prostate cancer. One that you mightn’t have thought about are shingles. Snuffy Myers has always recommended for his patients that they have shingles vaccinations, not because of the immune system but because when men have advanced prostate cancer and they get shingles on top of it, it turns out to be extra miserable. So that will be one I'll be going for topping up. Other vaccinations include flu and pneumonia and so on.


So one great thing about the conference was the opportunity to meet other people and network with them. I met with Joel Nowak who runs the Malecare website. He introduced me around as Jim who is “my equivalent in Australia”. So those of you who have looked around other websites will have come across the Malecare website and also you will notice on some of the postings that we have put up we have said “this is from Malecare” and thanks to Joel, and he's keen to put some of our stuff up on his site and for us to work together some more. I met his wife Cathy as well and the interesting thing about Cathy is that she runs a womens group which my wife Wendy did until her health started to fail. I met Nathan Roundy who works with Bob Liebowitz. I know one of our members is keen on Bob Liebowitz’s treatments so that was useful. Mark Scholz is head of the Prostate Cancer Research Institute that organised the conference and one of the top two best known medical oncologists to American survivors and I met him back in 2010 and he was a great inspiration to me then and Mark has agreed to talk to our group on one of our meetings. 


Mark Moyad who addressed us last December was very, very kind to me. Big hugs and at one stage he did an Oprah kind of deal where he pulled me up on stage and said that I know that you would be feeling homesick and he pulled out a big can of Fosters. It looked to be about 2 litres, huge thing, and he put that in my arm and said ”but that's not all!” and he pulled out a second one so I'm quite loaded. And then there is a chain, a cafe chain over there called Outback which has an Australian theme. You know they have Australian people reading the ads and Aussie things and he gave me a cap from the Outback steakhouse. And a boomerang. And a DVD of Crocodile Dundee and he hung a big thing around my neck that is used by supporters of the Michigan Wolverines, the team at his university that he strongly supports. So he was very kind and he is going to talk to us another time as well.


So any quick questions on the conference?

Person #8: It sounds like you had a fantastic time Jim. it's  quite a brotherhood that's developing internationally. it's  a good job that you have done. The vaccinations from what I understand is mainly effective when you have not too high tumour load. Was that confirmed in what you heard?

Jim Marshall: I never heard that said. But I have previously read that. First of all what they said about Provenge is that you have it but you don’t stop your other treatments and don’t expect instant results. Although Provenge does extend life and so on it has no visible effect on PSA, which was interesting.


Our mention of brotherhood reminds me that another group I met with were members of The Reluctant Brotherhood. They run a phone in conference like ours in a way. They run one every fortnight. One is for men newly diagnosed to ring in and have a yarn and the second is advanced ones like ours very much. And they have invited me to join in theirs and we should invite them to join in ours at some stage or another.


Person #8: it's  a good report Jim. Thanks. Great.


Person #2 : Just on the business you were talking about the vaccinations actually help provoke your immune system into greater action on things. It was interesting I, and you may be aware of it, but some in the group may not be as I was not up to speed; my doctor offered to give me a vaccine for pneumonia which I didn’t think they had. So apparently there is one out there for pneumonia these days.


Jim Marshall: Yes, yes. Ive had that. it's  mostly used for at risk people. At risk in their general health sense. it's  not like the flu vaccine offered to everybody. If there is informal information that I conveyed that is interesting to anyone they may talk to their doctor about whether a pneumonia vaccine might be useful to them. 


The next thing is the Senate inquiry report. Over the last number of years, myself and a number of the people who are listening to me now have made efforts to put submissions to various bodies and sometimes you wonder whether you will have any effect or not. So the Senate inquiry report that we did, very definitely had an effect. I mean the first effect was that I was summonsed to speak on behalf of the group to the Senate inquiry and they listened to me very well and took note of what I said. Secondly many members sent in their own submissions and now that the Senate inquiry report has become available over the last few days it turns out that not only did they read the submissions on behalf of organisations, they read the individual submissions and the submission from our member Janis Kinne has been quoted in the report. So it's  pleasing to know that you've been heard. 


As well the recommendations show that we have been listened to and that we can expect that the delays that were Abiraterone becoming available will be addressed. So if you are interested in that report before I produce a report on it there is a link on JimJimJimJim.com on the front page. On the right hand side there somewhere it says the report is there and if you click on that you can download the report.


Any quick questions on that?


Person #8: Just a quick comment that both Zytiga and Xtandi for use before chemo got prominent coverage in the total range of cancer drugs. That's encouraging.

I think also quite a bit of emphasis in getting the approval process in Australia (to run) more efficiently and more quickly. That came out in many parts of the report.


Jim Marshall: Yes, yes. That of course was the main thing that we were pressing. 


OK, next report. Having said how useful these submissions are, members will know that Xtandi and Zytiga are available for use, subsidised on the PBS, so that if after chemotherapy you want Xtandi or Zytiga, one of them but not both, the Government will pay almost all of the cost. I think you'll pay something like $36 or $6 or $0 depending on where you are with the PBS. The committee that recommends that things go on the PBS is going to look at a request from the company that Enzalutamide, Xtandi be made available before chemotherapy and they have invited submissions.


So the national body, the PCFA, is going to do a submission, we are going to do a submission and they have invited individual submissions again. And I have just said these submissions do have an effect. We can't tell what the effect was with these ones for the PBS because there is no report afterwards but seeing the Senate inquiry report showed that we were well heard. I would recommend that members think about making a submission. We will, I will be putting out details about what you might say in a submission and how to do it but if you are ready to start by yourself if you go to JimJimJimJim.com to the front page, again somewhere on the right hand side there is a link to the page where you write how important this would be for you.


So the main things...the main benefit of Enzalutamide before chemo is that it's  before chemo. Chemo some people handle quite well and they just lose their hair for a while and other mild annoyances. Other people it can be terribly distressing. So distressing they give up using it and for about 1% of men it actually kills them. Of all the people I spoke to informally in the United States, they all just start with Xtandi or Enzalutamide. Seeing as it's  approved over there, nobody that I spoke to chose to go onto the harsher chemotherapies first.


Person #9: Just a quick comment putting a personal position on that as I am on a trial with Enzalutamide and my PSA is continuing to drop and is down from 69 middle of last year and last month it was 5.0 and continuing to drop so I'll certainly put in a submission on that.


Jim Marshall: Going back to my report on the conference. Over the last 6 years I guess Ive taken more than 500 calls from men with advanced prostate cancer and I've met a guy who became metastatic 17 years ago and I spoke to a chappy on the phone who became metastatic 19 years ago. But of course Australia is a small country compared to the United States and there were people who were, standing up and saying things like 'my PSA was 6000', or '21 years ago I became metastatic', and so on. So they have a lot more examples of people who have lasted a long time.


Olivia Wright: Hi Jim


Jim Marshall: And I'm looking forward to your talk. Ive just been talking to the men about a conference on prostate cancer that I went to in the United States and one of the things I was speaking about the first conference I went to was in 2010 and things are just so enormously different in 2015 so I'm looking forward to your talk because the last time you spoke to us was in 2012. And you of course, as we are, heavily into science and so I expect things are probably quite changed in those few years.


Olivia Wright: Unfortunately with nutrition there haven’t been that many studies done with a whole diet approach. We are taking I guess a little step backwards, well not backwards in a bad way. We used to look at individual nutrients try to see what effect they had, you know, on the expression of genes and cancer progression markers and things like that. And now we are more looking at an entire diet pattern that is beneficial, particularly we have narrowed our focus a little bit to fight in taking ADT, just to try and mediate some of the metabolic side effects because those side effects seem to be associated with cancer progression. Does that make sense? 


Jim Marshall: Yes.


Olivia Wright: Because we are trying to intervene on something that we know is associated with cancer progression but also in more broader fashion so I guess we are becoming more interested in a general anti inflammatory diet as well as the Mediterranean diet in using that as a pattern of intake to improve things. And I was talking to one of the leading cancer specialists from the US. She came out here last year and she is moving that way as well and I said to her we should stop looking at food individually and that green leafy vegetable component individually and now putting them all together and what happens if guys eat a diet full of all of these and add them in gradually and then make recommendations about that. So that's what we are going around doing at the moment. So we have seen a very big change in that way, because a lot of the gene test markers and things aren’t quite telling us what we thought they were either. A lot of the gene related testing we are learning a lot more about that and it's  still got a long way to go so we would rather put our energy into things that we are more confident in like some of the metabolic biomarkers and aspects like that. We find that it will give us more reliable outcomes.


Jim Marshall: Introduced Olivia to our Chairman, retired radiation oncologist Dr Bruce Kynaston.


Chairman Bruce Kynaston: Welcomed Dr Olivia Wright and invited her to begin her talk.

See next post: Nutrition expert Olivia Wright talks with men with advanced prostate cancer

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