Exercise: Dr Prue Cormie talks to men with advanced prostate cancer about exercise. Minutes August 2014

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Advanced Prostate Cancer Telephone Conference Minutes August 2014

Courtesy of Nev Black

 

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

 

[Jim has highlighted some of Dr Cormie's key points in bold green below to help find them later on re-reading]

 

Jim Marshall  Welcome all. I would like to congratulate two of our members John  Trollor and Len Lamprecht who received the PCFA Max Gardner Award this year. It is good to see wonderful people who do good work rewarded and honoured, as was our distinguished Chairman Bruce Kynaston with the same award last year.

 

Chairman Bruce  Thank you very much. I have one apology. We have been advised our guest speaker will be coming on later rather than earlier. 

 

Person #9:  I think members will be pleased to share with me the good news that I have retired from my university. I am still an associate professor there. I still have an office and I go to the office a couple of days a week.

 

Chairman Bruce  Are others wishing to update?

 

Person #15:  Blood test November 2011 my PSA had increased from 4.4 to 5.6. It was sufficient to trigger a Biopsy in February 2012. Gleason 6. T1C. 

Robotic assisted surgery October 2012. Gleason 9. T2C. Margins status was negative.

The comment was that intra prostatic lymph vascular invasion was present. Post end PSA has gone from 0.02, 0.03, and 0.06 in February this year. That was sufficient to suggest that there must be something was going on. I then had radiotherapy to the prostatic bed.

 

Last PSA 0.68. This can happen post radiotherapy. Last blood test was the end of October. I feel well. There is neuropathic pain in my rib. Medication causes me to get hot flashes or an emotional thing I feel prickly heat. That is about it. I am 62.

 

Person #11  This pain in the rib how long have you had that?

 

Person #15:  It was post radiotherapy. About 2-3 months. The pain is staying the same. I describe the pain as a dull ache and it is there all the time. I had a CT scan and it didn't show anything.

 

 

Chairman Bruce  Invites   Person #14   to speak.

 

Person #14:  About six weeks ago I ended up with excruciating pain down both legs and my buttocks.

 

I was sent off for an MRI and I recently completed a CT scan which was all clear of soft tissue. The bone scan showed no new secondaries. The results from the MRI were of a synovial cyst at the L4 and L5. I also sent to Radiation Oncology Queensland and an Orthopaedic Surgeon with respect to the cyst. On diagnosis I had four secondaries in my lumbar spine. 

 

In this latest MRI there is no mention of these secondaries. My question is what happened to them? I had radiotherapy to my pelvis in February/March 2009 and then intermittent hormone therapy. As well as Zometa. Will the secondaries completely disappear in the bone repair?

 

Person #11  I guess that is a possibility if there has been no suggestions of your bones crunching itself or squashing a bit. I would probably think your secondaries have been suppressed. Thank goodness for that. If you have got a synovial cyst that is enough to cause your symptoms. I can’t say any more than that as you must be guided by your consultants as I am not one.

 

Person #14:   The synovial cyst started like someone turned a key on and then I guess two weeks ago somebody turned the key off. I have absolutely no pain. The Radiation Oncologist Queensland basically said I actually never had cancer in my spine. It has been the cysts that have been causing all the pain. I just wondered if the bone can heal itself. Nothing remains of the secondaries.

 

Person #11  They can shrivel. I don’t know if the bone can repair but I suppose it is possible with osteoblasts. 

 

Person #16:  What was the scanning method that was used to suggest that you had bone mets down there in the first place?

 

Person #14:   I had an MRI and I also had a bone scan as well and they were picked up on both.

 

Person #16:    The other scanning technique which is pretty good for bone mets is a PET/CT scan with radioactive sodium chloride as the contrast agent. If there is any ambiguity or if you get any recurrence, a PET/CT scan is something you could discuss with the doctors. Another important shot in the locker if you should ever need it, and maybe you won’t, is Xofigo, Radium 223, which is very much a bone targeted radiation agent to hit mets like you may have had.  

 

Person #14:  I have just taken a note of that. Thanks.

 

Person #1:   While I do not know, you often see pictures of before and after scans posted on the net, and they show big black dots on the left which have disappeared on the right at least on bone scans.

 

Maybe it is possible they disappear from scans if they are responding to treatment.

 

Person #14:   It is interesting. I had the bone scan about a month before the MRI. On the bone scan it was still there.

 

Person #16:   Do you know what your PSA was at the time of your bone scan?

 

Person #14:  It was 128. Five days later it was 136,

 

Person #16:  You are well passed any threshold problems of picking up mets with bone scans if you are up there. What is your PSA now?

 

Person #14:  2.7

 

Person #16:  You would be happy with that.

 

Person #8:  I just wanted to mention that I will be going to Sydney's St Vincent's Hospital and they will be doing a bone scan, CT scan and an MRI. This is to find if I have got any soft tissue involvement with the cancer. If I do, they will not be taking me on a trial of Radium 223. If it is clear of the soft tissue involvement and only in the bone, it looks like I will be flying down there every month over the next six months for Radium 223. 

 

The PA Hospital is still considering Radium 223 as being worse than the chemo drug Cabazitaxel. Sydney says I can still have Cabazitaxel after the trial is finished.

 

Person #11  I looked into that and there is a lot of Alpha activity and some Betas that are coming further down the decode line in the Radium 223. That may be the reason for reservations in certain circles. The Beta ray emission may produce accumulative effect like the previous agents used in the treatment of bone pain and metastasis by nuclear medicine.

 

Person #3:   Last week was my ninth year anniversary from being diagnosed. I have only been on monotherapy because it was already metastatic. I had a Gleason 8. PSA 24. I have been on Eligard all this time. 

 

Last year it was slowly going up and it hit 40. My bone scan was showing activity. My oncologist put me on Anandron (Nilutamide), which is a second line hormone tablet. It has had a dramatic effect. My PSA after six months is 1.9 and I have had virtually no side effects. I haven’t met anyone else who has had such a good improvement with this drug.

 

For some reason it has worked for me. I have another test in two weeks. The oncologist said I am just responding really well from hormone therapy. He said when this fails, and it probably will eventually, I will go on some of the other second line hormone which he doesn't normally prescribe to people. I am not on a trial. I am playing golf. I was in the gym this morning and doing a bit or work. I am 70.

 

Person #21 The report for good responders to the second line hormone therapy is that you often respond to other ones. There are reports of up to five secondary hormone therapies in use, sequential one after the other. If you're a responder, this data tells you that there is a good chance you will respond well to that second one.

 

Person #3:   I thought I would have to have chemo which I am terrified of having.  But because I am responding, hopefully it is a long time before I have to get to that decision and that hopefully Zytiga will be on the list. I have got a feeling that won’t happen for a while.

 

Person #21 I have also seen reports that people who use Cosudex as the first of the second line hormone treatment can respond for a couple of years. There is more than that looking at Enzalutamide (Xtandi), Zytiga (Abiraterone). At a later stage you may respond well to one of those as well.

 

Person #3:   When we look at survival, and I guess we don’t talk about it much, but when I was first diagnosed in 2005 the median life expectancy was three years and 10% lasted 10 years. I am in my tenth year and with these new drugs around people survive for 15, and maybe, 20 years.

 

Person #17:  You're on Eligard and then you had Anandron prescribed, were then any other new drugs?

 

Person #3:   I have been on monotherapy forever. I am still on Eligard. I had a few doses of the Bisphosphonate, Zometa. It didn’t seem to make that much difference. Apart from that in December last year I was added to the second line hormone Anandron. I have been taking that for nearly nine months. My PSA was 1.9 came down from 40.

 

Person #17:   I had Anandron in a similar situation a couple of years ago and it barely slowed down the slow rise of PSA at the time. It didn’t have a dramatic drop effect. I had Cosudex prior to that in addition to the Lupron that I am on. That, for you, is a really good result.

 

Person #11  I would like to make a comment about Zometa and not effecting the PSA. As a biological way of thinking, Zometa stops the prostate cancer from getting more space in the bone area. It doesn’t affect the prostate cancers that are there. Because it just affects the ability to get a bigger space, I would imagine it would have no effect on the PSA.

 

Person #3:    I think it was just given as a defence mechanism to build my bones up because I had been on hormone therapy for nine years and my bone mineral density was dropping in spite that I am completely active. I think it was given to me as a bit of a boost to see and it did slow it down a little bit.

 

Person #16:   What mineral bone density figures are you getting?

 

Person #3:    Probably just a little below normal. It is not Osteopenia. Down to about -2.5. I still walk around the golf course and I go to Pilates.

 

Person #16:  If you are doing plenty of weight bearing exercises, which you obviously are, that is a real plus.

 

Person #3:   I did that Queensland University course for prostate cancer guys.  That program was good and got me back into exercise. I don’t know whether you have had many reports on that. People now are saying to take note and exercise is good for people with cancer.

 

Person #16:   Weight bearing exercise is good for the bones and the more you can do of that the better. What about calcium and vitamin D, do you take any of that?

 

Person #3:   I take vitamin D and I have taken that all along. I import it from America. I have found that I do not need a calcium supplement. I take magnesium as well at night.

 

Person #16:  Calcium is protecting rather than curative. You can overdose on calcium and it is not good for cancer if you have too much.

 

Person #3:   That is what I was worried about.  There is negative information from taking calcium tablets and overdosing on it and it can be serious. That is why I tend to follow Dr Snuffy Myers.

 

Person #16:  One of the things with magnesium, calcium and zinc is that they are all in the same chemical class and they compete with each other a bit with the way the bone structure works. It really depends on how much calcium is in your diet. You need to have about a good 1200 mg/day plus a day. But if you are getting it in your diet ,you don’t need to supplement it. If you are not getting in your diet, it might be worth looking at. It is really important.

 

Person #9:   I would just like to add to what   Person #3  said about the exercise programme for prostate cancer done by UQ. I attended it this year and I can report it has tremendous benefits in terms of physical health but also emotional balance.  Person #3   would you please remind me of your history of metastases and whether the cancer had spread into your bone and if, where and when?

 

Person #3:   When I was initially diagnosed, the cancer had already spread and was metastatic and it was in the right acetabulum. August 2005 PSA 24. I had a biopsy and they saw I had bone cancer in me but it was definitely prostate. They gave the good news it is definitely incurable. They said it was hormone therapy and that is it. I saw the radiation oncologist and in fact he who gave me the hormone therapy and that got my PSA under control. It never got lower than 0.7. It would sort of go around one for a few years and then it got to two and started slowly taking off. It was bone metastatic initially and they came back when it got to 40. I assume it is fine right now because the PSA is down to 1.9. I have had very little treatment really.

 

Person #9:   Did you think about radiation and never take it up?

 

Person #3:   I was never offered radiation because it was pointless. My understanding of metastatic disease radiation is only used for pain at the end of the day.

 

Person #11   Or to prevent fractures. Just a translation acetabulum is the socket of the hip joint.

 

 

Let’s have the introduction of our guest speaker Dr Prue Cormie please.

 

Person #23:  Earlier today we have had people talking lots about exercise and saying how helpful it is. A few of our members have spoken about the exercise program University of Queensland is running.  

 

Dr Prue Cormie is a Senior Research Fellow at the Edith Cowan University Health and Wellness Institute which is at the forefront of exercise for cancer patients. She is an accomplished young researcher with a track record including 50 refereed publications. 

 

Dr Prue  has been successful in being awarded over 2.3 million dollars funding. In these days in a very competitive funding to get so much, she must be doing something very well. I would now like to introduce her to talk to us about prostate cancer and exercise.

 

Dr Prue  Thank you very much for a very lovely introduction. I must say it is a pleasure to be involved with your meeting this morning and thanks for having me in to have a chat. Hopefully I can provide you with a little bit of information about what we do over at Edith Cowan University and what some of the outcomes of our research are. 

 

This morning I will be discussing the impact of exercise in counteracting the adverse treatment related side effects in prostate cancer and also for improving wellbeing specifically in men with advanced prostate cancer.

 

At the Health and Wellness Institute I work with a big team. We are a multi-disciplinary team of exercise physiologists, radio-oncologists, urologists, medical oncologists and psychologists. We have a really robust team of nurses involved as well. The core focus of our research is really about improving outcomes for guys like you. We spend all of our time trying to figure out how to best prescribe medicine and what is the best way we can get exercise using these medicines to help manage everything that goes along with prostate cancer.

 

I will go through and give you a bit of a feel. If you prefer, we can keep questions until the end. If you have any burning questions, please feel free to jump in. I am happy to discuss anything and everything.

 

There really isn’t a medical intervention that holds any greater promise for improving the health and promoting the well-being in the elderly than exercise. This certainly applies to cancer and particularly to prostate cancer. We know that exercise, and this is based on all the scientific evidence, that we know at the moment, holds really great potential as an additional therapy or intervention to help reverse treatment related side effects and to improve the quality of life of people going through treatment.

 

I thought it would be interesting if we started out with just early research data looking at how exercise can actually play a role in screening survival in men with prostate cancer. This is observational research out of the US and which you can collaborate to perform this research. What they actually did was looked at the physical activity levels in a large number of men with prostate cancer in localised and locally advanced prostate cancer at the start of the study. 

 

They followed them up for a long period of time and basically showed that the men who were involved in more exercise had a greater survival effect, had a larger protective effect against death from any cause, and more so, prostate cancer specific mortalities. What is really interesting about this research is that they also had a look about not just what exercise that work but looking at the quality of the exercise which is so important. The amounts of effects for higher quality exercise or more intense exercise were quite marked: About 50% lower risk of overall mortality and a 61% lower risk of prostate cancer specific mortality.

 

It is in early days and it is observational research but as you can imagine that are really big effects. At the moment worldwide there is a push to explore that relationship. The use of exercise to help prevent spread of prostate cancer and keep the cancer at bay is quite similar to a lot of research in other chronic diseases and healthy people looking at the protective effect of exercise against premature death.

 

There is strong evidence that shows exercise is probably the best health insurance policy you can invest in.

 

Let's get into more specifics about prostate cancer specifically and some of the side effects. As you guys well know that the impact of androgen deprivation therapy on loss of muscle mass and also the increase of fat mass is quite pronounced as well as accelerated loss of bone and bone mineral density. We found quite a bit of research exploring the ability of exercise to counteract the changes and we find that men undergoing androgen deprivation therapy and the same effects will happen when we are looking into Zytiga and Xtandi and these accelerated or more intensive androgen deprivation drugs. We figured exercise can actually prevent those changes. Prevent fat mass gain and especially gain around the trunk which is a precursor to diseases, such as cardiovascular disease. 

 

It prevents the gaining of fat and helps preserve muscle mass. This is not only in men who are initiating ADT but also men who are on long term ADT. We can actually see that exercise can reverse that loss of muscle loss. That has big implications on physical function which we can talk about a little bit later. We see quite specifically as well the type of exercise that will affect you. So we are really looking at resistance exercise being a really important element to prevent that loss of muscle mass and that is lifting weights. We will chat about that later in more detail.

 

When we are talking about loss of bone mass as well we look at again another type of exercise that is very specific, specifically targeting the bone and this is what we call impact exercise. This includes things like jumping, hopping, skipping, bounding and it sounds like a lot of very intense things to do. We use this with men who do not have bone metastatic disease. We progressively work through this to actually see if we can minimise the loss of bone mineral density or bone mass. What we see is men who are involved in resistance exercise, lifting weights as well as these impact exercises supervised by qualified professionals and who progress individually in a very highly supervised way, when we use that combination with the resistance impact exercises we can actually prevent the accelerated loss of bone mass associated with these androgen deprivation drugs. They have some implications in terms of protection of fragility of the bones and so on.

 

More recently in looking into how exercise can actually impact your well-being, we have done a couple of studies and there is a large study ongoing at the moment looking at this. We have done some early work and we put together some theories about why exercise can actually improve your well-being. You can basically do this by counteracting many of the adverse effects of the treatment. As I mentioned, body composition changes is one thing, fatigue is another, mental well-being and physical fitness, also looking at how the impact of exercise on maximum self-esteem and overall quality of life.

 

For our initial work we looked for just over a three month period with men on long term ADT. We actually saw that the men who were involved in a twice weekly gym based exercise program were able to maintain their sexual activity over a three month period. Men who maintain their usual care who were not involved in the program actually decreased their sexual activity. This was really driven by libido, sexual desire. Exercise helps maintain libido where the usual sexual desire drops off quite a lot.

 

This is really exciting stuff. We have also seen that men actually initiating ADT for the first time or indeed perhaps one of the new drugs, exercising at that point, actually minimised the reduction in sexual function as well. We have done some qualitative research and interviews with the men as well and we are definitely reflecting what we are seeing in the data. That is something we are exploring at the moment in a larger project. It is running in Perth at the moment. We hope to have it up and running in QLD and NSW early next year.

 

In addition to sexual well-being, we also see that along with their sexual well-being, we see that exercise has a pronounced effect on fatigue. If you exercise and you think you get more tired but exercise doesn’t exacerbate the fatigue and it is cancer related fatigue or about through different therapies. It reduces fatigue and again we see this in men who have long term ADT and an initiated exercise program, they reduce their fatigue levels and that is quite significant reductions there. Men who initiate ADT for the first time don’t experience that fatigue that is associated with that therapy. That is a really important finding it translates across quite a lot of elements of everyday life. 

 

Along the same lines we see exercise has beneficial effects in terms of mental health, both on depression and anxieties, but also improving mental well-being, we see this quite pronounced in terms of when initiating ADT for the first time. Having exercise minimised the increase in distress. We are also looking at actual improvement in mental well-being in overall mental health, social functioning and so on. There are changes there that go beyond physiological changes. I will talk to you about a couple of quotes here as well and this is from doing interviews on a number of men on long term ADT.  

 

Here is a quote we have pulled from our qualitative research.

 

Quote 1  ‘Well you felt better in yourself’

Physiological I suppose.

Quote 2   ‘It is really difficult to explain but I am a bit more positive about things’

Quote 3  ‘I was starting to get to the stage where I didn’t want to do anything and then I got put into this program. So I started coming here and it lifted me out of that and got me going, brightened me up a bit’  

 

I think what resonates with a lot of the men is another quote here.

Quote 4  ‘It helps increase my confidence and my ability and it encouraged me to continue on. I felt like I was doing something for myself that made me feel better inside myself’

 

We see that quite a lot and our exercise program is done in a group based program. There is also the potential to develop social connections there and have that shared experience of what all the guys are going through. It can be a very powerful way physiologically to actually do the exercise prompting improvement in hormones and so on that help mental well-being. Also from a social perspective and it is an important perspective as well. It is very beneficial.

 

This supervised element brings you to an important point. We did a yearlong research project looking at is the supervised exercise program necessary or can you give some educational information and a recommendation about exercise and is that enough to get the benefits of what I have been talking about. Very briefly the answer to that is no. We saw much more pronounced benefits with supervised group based exercise program. This is in a gym or a fitness centre. The way we looked at this is by having a six month supervised based program and we saw pronounced improvement across much of the areas I have spoken about already. 

 

Physical function elements, fitness, strength, and the ability to walk upstairs, get out of a chair basically repeatedly times and so on. We saw those differences quite pronounced at that six month period where supervised based programs. It was maintained at that one year later and that second portion for the six months was a home based program following the clinic based program. The improvements we saw compared to the recommendations came down a little bit after the home based program they were still quite there.

 

The message there is that any exercise you could undoubtedly help, but if you can get into a supervised program that is structured, involved with a description of this exercise, you are going to maximise your benefit.

 

I just want to have a chat about the research we are doing looking for the first time worldwide about how we can use exercise in men who have bone metastatic disease. This is some really exciting research. As I said it is the first time worldwide that this has been done and it is the first time it has been done for any cancer site at all. What we have done is to look at prescribing it exercise very specifically based on the bone scan results and where bone lesions are located. 

 

We are prescriptive in what we are doing in terms of trying to minimise the loading on the areas bones that have lesions. We target areas that are not affected by the cancer. In our early research and this has been published that we have no adverse events during those supervised program. Attendance is quite high and it is up around 80% over a three month period. Importantly the compliance is high and what that is, we are prescribing an ideal program, and the guys are able to perform that program without any pain or interference in their everyday activity. The compliance rate is 93% over that 12 week period. The guys also tolerated the sessions very well and they were able to exercise with the intensity that is recommended for all cancer patients. 

 

We didn’t see any instances of bone pain negatively impacting the ability to live everyday life. We also didn’t see the severity of bone pain increase over that period. What we did see is really good improvements in terms of physical function, strength, fitness, balance, the ability to walk around and move around quite freely. We saw quite a pronounced improvement in an objective measure of physical activity. 

 

You probably see a lot of the bands that people have on today that track activity levels we use these to dictate research to allow us to track the intensity of the activity and how much activity is going on during a seven day period. The guys involved in the program are far more active than  the guys who weren’t in the exercise program and that is outside doing the actual exercise session and that was just everyday life. That was a nice finding as well. Even in men with widespread bone metastatic disease, we can still prescribe an exercise that is safe and be effective. It allows guys to engage more actively in what they like to do every day.

 

The bone metastatic disease we have expanded that and we are getting close to wrapping up our follow up studies which has involved a larger number of patients and a larger range of outcomes. The initial results from that are really quite positive and we hope to be presenting that in conferences early next year.

 

I have given you a short snapshot of how exercise can potentially be used in terms of having an active effect potentially for survival and that is only observational at the moment but very early research. To also have to counteract those adverse treatment effects in terms of  changes in body composition, bone mass, improving sexual well-being, mental well-being, physical function and also (inaudible).

 

Before I close up, I just want to say that if you are interested in getting involved with exercise, please feel free to give me a call or shoot me an email. The best thing you can do is get a referral to an accredited exercise physiologist. They are trained and have four years tertiary education, continuing education to maintain a professional accreditation. They are the most well trained health professionals to be prescribing exercise. If you are interested in finding an exercise physiologist close to you there is a website where you can put in your postcode and it will pop up with accredited exercise physiologist. That website is www.essa.org.au  This can get you engaged with what the exercise guidelines are and individualise a program specific to you. Any questions?

 

Person #11  One of the things I have tried to get through to PCFA, and it has hit a brick wall, is a fact a couple of years ago in the Medical Journal of Australia there was a report about the need for care for the prescription of ADT. I have tried to get the idea that somebody like a urologist or a radiation oncologist sought of says we will start you on some hormone suppression here is a prescription and here is also a sheet of paper to go to a GP to get a referral to an exercise physiologist. You can start your program first up but that has seemed to hit a brick wall. Any help would be appreciated, I am sure, by the men who are so prescribed.

 

Dr Prue  Absolutely. We have been working really hard with pharmaceutical companies to make programs available. I am not sure if you have heard of a program called ‘Man Plan’ and that is associated with Lucrin. That is with a Lucrin prescription through the pharmaceutical company. It can provide involvement in the man plan which is a 10 week exercise program. 

 

We are also working with Astra Zeneca and they are creating a patient support   program that involves a supervised exercise program and that is called ‘Frank’ for the Zoladex. I completely agree with you and we have been pushing very hard to try and translate these research findings into meaningful programs that all men in Australia can access.

 

Person #16:  I just wanted to pursue the idea that support groups, prostate cancer specific support groups, might well be able to hook up with an exercise physiologist to set a program in place. I was just wondering if there were enough details, information that will direct such a physiologist to utilise the element of a program you have been describing. That is all something we could through our own local prostate cancer support group. Any thoughts on that?

 

Dr Prue  It is a brilliant idea. It is a big element of what we do and why we do it is to try and figure out exactly how to get more men engaged in exercise so they can realise the benefits. We engage with the support groups in Perth quite actively to be able to get them involved in the various different programs. I am working with the Cancer Council here in WA, QLD and NSW to try and roll out a community based program for all cancers. I think what you are talking about getting a formal program through the support groups is something that PCFA, I am sure, would be on board with and something that is undoubtedly beneficial. We find very much that the exercise program that we run it acts as an informal support group anyway. One of the big things about them coming to the program each day and keeping coming back for years and years afterwards is not only that they are feeling better and generating these health benefits in themselves but their connecting with the other guys. Great camaraderie and friendships, they have a coffee afterwards and go out for lunch every now and then. We do things like City to Surf together and stuff like that.

 

Person #16:   My thought is with the support group we are used to already and give you the ground of country and nearly all of them are face to face unlike this one. I don’t know if the PCFA has access to the program that you are talking about, the nuts and bolts of it that they could simply plug into or whether or not that needs to be established. I was just wondering how accessible that detail is to local exercise physiologists?

 

Dr Prue  This is a big issue. Exercise physiologists are trained to work in chronic disease so you can imagine across all different sorts of diseases from diabetes over to the osteoporosis. There are so many things that they have to learn about so unfortunately cancer is not as much time spent on cancer as we would like and specifically prostate cancer. 

 

At Edith Cowan we have developed a professional development course. We are working with, and that is available to, all accredited exercise physiologist and that is cancer in general. We are working again with the pharmaceutical companies to try and generate to go alongside the ‘Man Plan’ and ‘Frank’ program prostate specific professional development. What this does and we have been doing this for a long time is what we do every day we work with guys with prostate cancer. We have developed some knowledge and have got some understanding of exactly why we need to do the exercising. We definitely want to try and get as many exercise physiologists Australia wide up with that knowledge. It is a brilliant idea, and I think is something we need to push for.

 

Person #9:   I would just like to ask one question and perhaps expand on the idea that was raised. You mentioned that the manufacturer of Lucrin worked with you to offer a program. Could you expand a little bit about that program please? Is it locally based or is it only in certain centres?

 

Dr Prue  It is called the ‘Man Plan’ and you can look it up on the Man Plan website. If you google Man Plan you will get some information about that. We have worked with Abbott the pharmaceutical company and essentially this program is available nationwide. Unfortunately it is not in every region or every city. There is between 40 to 50 sites nationwide. What this program does, and there are a variety of ways you can get engaged, it can be through a face to face program and this is subsidised through the pharmaceutical companies. They provide financial support to make that happen. There is a telephone based program as well. If you are not close to a facility that provides the ‘Man Plan’ program you can get some coaching over the telephone. There is also a print material base support program. Anyone who is prescribed Lucrin or is on Lucrin can access that program at no cost.

 

Person #9:  Thank you doctor. I am on Lucrin and I will be looking up the ‘Man Plan.’ Before you joined us another gentleman on the teleconference mentioned a course of exercise with the University of Queensland last year and I went to that same program this year. It went for six weeks and was very beneficial. After the end of that I asked for access to other exercise physiology and I was given the names of a number of practices, and my understanding is that they have programs for individualised consultation and they could offer one physiologist to two people. I also understand there also could be programs with multiple patients being supervised by physiologists. 

 

Taking up the suggestion in our support group where we have far flung patients but at times we do have face to face meetings which suggest that there are certain geographical based groups or small groups that could get together say on a weekly or fortnightly basis and go to one of these exercise physiologist centres and we see the support on a group basis. My initial look into the costing is roughly $120.00-$130.00 per hourly session.

 

Dr Prue  I think it is a great idea. There is Medicare rebates. I am sure you have heard of Chronic Disease Management Plan. That allows you if your GP refers you with prostate cancer and you want to do some exercise to manage side effects and so your GP can refer you to an accredited exercise physiologist and you can get up to five session a year that are discounted through Medicare. They are five individual sessions that are rebated. 

 

We tend to use that option to get people started with their individualised program and learn how to do the exercises and gradually move into a group based program that you are talking about. That cuts the cost down quite dramatically. So you have the individualised program that is being subsidised through Medicare and then when you are ongoing with that group based program it gets counted down and we run sessions as cheap as $8.00 per person. A big emphasis on what we spend a lot of time trying to do is make programs available and options available after you finish programs for example research programs. 

 

We know that being engaged in a supervised group based program is the way you are going to maximise the long term benefit. Any exercise that you are doing is fantastic and any potential you have to go out and have a walk is really wonderful, and I would certainly encourage that but to have two to three structured programs each week allows the exercise to be really specific to you and be the best exercise that can be prescribed for you. That group based session is really beneficial to maximising the mental health and psychosocial health benefits. That is completely doable when you have multiple people involved and you can supplement it with using the system setup through Medicare to access exercise physiology services to cut down those initial costs involved with getting an individualised program.

 

Chairman Bruce  Thank you Prue. The thing about the GP and the Chronic Disease Management Plan when you wish to obtain one of these you ring and make an appointment and point out that is what you want because it is a prolonged appointment and that can make allowance time wise. Also your GP would be able to make a statement for the exercise physiologist as to whether you have got any areas of weakness and structure so care can be taken and not go willy nilly.

 

Person #17:  I have been on hormone treatment now continuously for 11 years on Lucrin and recently had Xtandi added. My main side effect is fatigue and the Xtandi has made that a little bit worse. The fatigue starts with you walk up the hill outside your house and the panting multiple times and having to stop to get your breath. The whole issue of exercise as a panacea to that is totally unattractive. There is a barrier there you have to get through. The other thing we have been hearing about marvellous things happening in Western Australia for some time now with the sort of programs that Rob Newton and various people like yourself probably involved in but there is very little I am aware of on the east coast. 

 

I am aware of the plan with your doctor, but if he just sends you off to the local friendly exercise physiologist, who may or may not be competent in terms of what needs to be done in the case of ADT for prostate, that puts up another potential barrier. Once you get beyond the prior limits of the cost ensured as well of course. There are certain barriers who will be taking advantage of this and probably other people like me and I think we need to try a facilitate halfway to get through those barriers in a way that people like myself can feel more confident and inspired to get out there and do it.

 

Dr Prue  Yes. You bring up a really important point here. Overcoming these barriers is critical. Your first point about the fatigue is completely understandable and is definitely a normal experience in terms of you going ‘You want me to exercise! What is wrong with you? I feel knackered already.’ 

 

The thing about that and what the research shows if you get the exercise right and do the right type of exercise and that really helps with the fatigue. When I say get the exercise right I am summarising a lot of elements that goes into that and that is really about what type of exercise you do. Resistance exercise can be helpful for that and the way, and the intensity, and the progression of that and how that happens as well. How it is monitored and that a session is set up and you can go through a range of exercises whilst you're managing your fatigue and doing them intensely that is high enough to (inaudible) adaptation that then helps counteract that fatigue. There are a lot of elements to getting the exercise right and there is a huge barrier to initiating exercise. I would encourage you to if you can to try and do something to help manage the fatigue. If you have an appetite to give it a try I would encourage you to see an exercise physiologist. If by chance you are in Perth give me a call and come out to ECU and we can try and do something for you.

 

The whole idea of what is happening in WA, I know people who run health and wellness clinic’s here, and we run an exercise clinic alongside the research we are doing. We spend all day doing these things. Not only for research but also practically making it available to the community. We see what benefits that has and that is why we are so passionate about trying to do everything we can to expand programs. As I mentioned we are working hard to have an accredited exercise physiologist upskilled in cancer and also specifically prostate cancer. Working to have prostate cancer specific programs funded nationally through at the moment the pharmaceutical companies. The potential to have specific PCFA support group programs is something that is very exciting. 

 

[Dr Prue spoke about how Edith Cowan University was attempting to include a consultation with an exercise physiologist as part of the Prostmate program. (https://www.prostmate.org.au ) As at June 2015 Prostmate does not offer a consultation with an exercise physiologist.]

 

We are definitely working on a number of ways to try and minimise barriers such as getting a medical obviously involved with it first and try and work through subsidised programs from a qualified exercise physiologist. Working through a exercise physiologist to work through and identify barriers that are specific to guys with prostate cancer. Try and chip away at that and facilitate long term effective exercise program. We are working on it, is the short answer.   

 

 

Person #13 :   Last month we had an endocrinologist  talk to us. She made some interesting comments about how upper body strength exercises   improved balance and prevented falls, as well as helping bone density.

 

Dr Prue  An important point there is that it is not just upper body exercise.  Lower body exercise is important as well, especially for the big bones and muscles that help with preventing falls and just everyday function. The exercises that we do really targets the major muscle groups in the lower limbs, the trunk and the upper body. We look at both. The majority of our exercise programs incorporate aerobic exercise, so walking, cycling and rowing and distance exercise, is the core work. 

 

Lifting weights, lower body, upper body, the back and so on - that is the core focus. Within that we can have different kinds of prescription based on whether we want to look at bone as the major outcome and if it is safe to perform impact exercise which we talked about before, like the hopping and the skipping. That is not safe for everybody and we do that in a highly supervised environment in a very prescriptive way. It is a sophisticated type of exercise. Certainly the evidence shows that any kind of upper body, lower body and aerobic exercise is very beneficial.    

 

Person #17:   I know Rob Newton has been involved in the Movember how to live with and for survival program on the exercise front and I know ASAP are starting a pilot program in the Northern Rivers and South East Queensland area in a month or two time. Will that include an exercise element to it?

 

Dr Prue   Yes, we are working away on that. Unfortunately it has been delayed for quite some time. We have been engaged with that. Rob, Daniel and I have been working on that and we will definitely be putting together some resources and materials to try and have specific programs involved with ASAP targeting exercise.

 

Person #16:  You mentioned the cost to participants in group sessions cost about $8.00. How many participants are involved in such a program and how do you monitor participants?

 

Dr Prue  You do a minimum of about eight participants in a session like that and it depends on the program. So for example you could have subsidised programs and that is how we get to $8.00 a session. You can have subsidised programs through state government or different organisations and so on. We keep the ratio of exercise physiologists to a 1 to 8 maximum level or 1 to 10 at the moment. For larger groups we have multiple exercise physiologists involved. Within that we use practice students and we spend a lot of time educating students as well. We usually have a lot more students supplementing that as well. 

 

We spend a lot of time specifically reviewing the program so we set very specific programs based on individual health history and progression and what is going on. Before and after each session we will go through the entire program and talk to everyone at the session and see how they are doing and what they have been able to accomplish. Then we modify either during the session or after the session for the next session.

 

Person #16:  Do you do anything physical like the blood pressure or heart rate? Glucose levels in blood things like that?

 

Dr Prue  Absolutely. Where ever it is indicated we certainly do. Even treatable it is probably not relevant to prostate cancer patients but if anyone has pulmonary issues we look at oxygen saturation and so on. We are fortunate because we are a specific exercise physiologist clinic so we are not a gym or a fitness centre where there are a lot of different people working there. We have the structure and infrastructure set up. Nationally there is more and more exercise physiology services becoming available and there is more of a need for it and an appetite for it. There is a big push nationally what is called exercise with medicine. 

 

This push is from Exercise and Sports Science Australia is to upskill general practitioners about exercise physiologist services and the benefits of that. I think as that grows and the awareness about exercise physiology grows, there will be more and more resources available and what we can offer here in Perth and what big clinics can offer in other areas. It is a growing field and we definitely have plenty of work to do.

 

Dr Prue If I have not answered all your questions or a specific concern, so Jim Marshall   please feel free to pass on my contact details. I am more than happy to do all I can to try and get you engaged with exercise or at least answer your questions and your referral to our people.

 

Chairman Bruce  Thanks  Dr Prue Cormie  the guest speaker for her time.

 

Person #14:  In the course of your discussion you mentioned libido and exercise. I was diagnosed with metastatic prostate cancer in July 2008. I have been on intermittent therapy since then with ADT, Zoladex and Cosudex. I also take Zometa but I exercise and I have done on a regular basis since I have been diagnosed. My worst side effects apart from the loss of libido etc. as is fatigue and energy, I just don't have it. I just wasn't sure what your connection was or have you found a connection between exercise and loss of libido?

 

Dr Prue  We are in the early stages of looking at this. Our initial research has shown that exercise helps to preserve libido while on androgen depravation therapy. There are losses and especially when initiating androgen deprivation therapy. Exercise can't prevent those losses but they can help to minimise them. That is what our initial research is showing. We have launched a large research trial now that we are just recruiting for now. We are really trying to drill into these effects and understand why and what about exercise that does this.

 

Initially, it minimises those losses and hopefully we will see in the next few years why that is the case. We can be a bit more prescriptive then about exactly what type of exercise can help. Especially what we have seen initially the resistant exercise is very important. That is lifting weights. I don't know if you have been doing that and if you have I encourage you to continue on. In our initial research that is what we are seeing is very beneficial.

 

Person #14:  I do a little bit of resistance training including weights, walking and hydrotherapy twice a week. I just don't have the strength to do anything.

 

Dr Prue  Exactly, and the fatigue is going to be really hard as well. Are you doing your program with an exercise physiologist?

 

Person #14:  I kicked it off with lessons and then when I had to start paying for myself I got all the notes and I continued on following the printed material.

 

Dr Prue  I would encourage you every now and then if you can, maybe six months or 12 months, to just have a check in and see how you are going. Potentially to revise your program. If you have any specific questions please give me a call and we can chat about that in more detail about what you are actually doing with the program.

 

Person #14:  Thanks very much.

 

Jim Marshall  Dr Prue you have really presented us with clear options and improving our chances of survival and improving our quality of life. I will be passing your details to members. I would like to thank you very much for your time. We really appreciate it.

 

Person #16:  The opportunity for all of us to act as extension officers for the work that Dr Prue and her group is doing and has made me sit up and take notice through other support groups. If they could run face to face sessions with an exercise physiologist. Thank you for that thought. It is very encouraging.

 

Dr Prue  It has been an absolute pleasure and I wish all you guys the best. Please feel free to contact us anytime.

 

Person #1:  On our website there is a study about men who have had surgery plus radiation and their PSA starts to rise after that radiation and it looked at how long they survive. Half the men that started ADT were still alive nine years later. Of those who died only 18% died from prostate cancer. Often later in life it turns out you are more likely to die of something else. If you can exercise and do other things that go along with it, that would be helpful.

 

Person #1:  Just a comment on what  Person #3  was saying. He said he was taking 5 one 1000 international units of vitamin D. 

 

Professor Mark Moyad at the University of Michigan and an expert in alternate treatments and he worries if people take too much of any particular vitamin. He would claim that anyone who is taking vitamin D that their doctor checks the level they are at. I know one person whose dose is one capsule 1000 international units every second day whereas mine to keep it up to the high 

normal area I need to take 3000 a day. I needed to take 6000 a day initially.

 

Person #9:   I am in a similar situation to you. My Endocrinologist initially put me on 3000 units of vitamin D per day to bring my level up. After the latest blood test I have now dropped back down to one tablet per day. She said once the level is high enough the maintenance required for that is intake. Now I am on one tablet and she is monitoring that to see if that is sufficient.

 

Person #16:  I would strongly expect that the vitamin D you need is going to be latitude dependant. It depends on whether if you live in Far North Queensland or Hobart and seasonal depends on whether it is winter or summer because your skin will generate vitamin D extremely rapidly if you're exposed to sunlight even for fairly short periods. Some people because of their condition might not get a much outside time as others. 

 

It is a bit like blood pressure it depends what's going on at the time you get your test done. You need to be careful not to rely on one test at one particular time of the year in one particular place. In my own case I dose myself more in winter living in Geelong than I would in summer. I can't say I have followed the blood levels closely but I have kept rough track of them. Just an extra bit of information.

 

Person #1:   Just adding to what   Person #3   was talking about magnesium in small amounts is also good for bones. We might talk about that at another stage. 

 

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

[GrahamW]

 

A small correction - the website link above for the accredited exercise physiologists (near the end of Dr Prue's talk) should be www.essa.org.au

 

[Ed.  Thanks Graham, Good pick up.  The link in the main post has been corrected.]

[Paul Edwards]

We also have the transcript of a talk by Dr Prue Cormie about how exercise can counteract the devastating sexual dysfunction caused by prostate cancer treatments.

 

Click on this link to read this talk.