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Dr Farshad Foroudi talks to men with advanced prostate cancer about oligometastatic (few metastases) treatment. Minutes phone-in 23 Aug 2013

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Minutes: Advanced Prostate Group Meeting August 23 2013


Courtesy of Secretary Nev Black


 


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


 


Guest Speaker  Dr Farshad Foroudi


 


Chairman Bruce Introduces Person #2  to tell the group his story.


 


Person #2    I live in Cairns and have been here for 44 years. I am aged 66.My brother 6 years older than me was diagnosed 2 years ago with prostate cancer but it was only very low risk and he has just kept on a watch. That made me realise I needed to go more regularly to have a check-up. I had been in September 2012 and my PSA was 2.1.I went back to the doctor in December and it had gone to 2.3. He did a digital at that stage and said it was enlarged.


 


 In early January I went back and it was 6.9.That is when he sent me to a specialist at the Mater Hospital they contacted me and said we are very concerned with how quick this is going we want you to go and have another blood test and urine test. The results came back 3 days later and it has gone to 14.9.They booked me in for a biopsy and then have a talk to my specialist. Yours is a high priority and we need to do something immediately. Early April I had the biopsy; my doctor contacted me to say I needed to see him ASAP. He proceeded to tell me I had prostate cancer. My Gleason score was 9 and there was cancer in 9 out of the 12 cores.


 


The following day I had an abdominal scan and then a bone scan they all came back ok. Towards the end of April I went back to the Mater and saw a Dr who works with My Specialist. He explained surgery was no longer an option as it has already left the prostate. Before we can do anything we need to do a TURP because your kidneys are already starting to become infected because I wasn’t urinating very often. In the meantime I went onto Hormone Treatment, 2 weeks of Cosudex then I went onto Zoladex. After four weeks of treatment the PSA  had gone from 14.9 down to 0.93. That means that’s all working. I had the TURP operation early June.


 


In mid-June I went and saw a Doctor who is a consultant radiologist in Cairns. We now have one of the most modern radiation set ups in cancer clinics. The Doctor went right through and discussed 3 gold seeds that would be implanted into me and I will be having radiation for 8 weeks.  At that stage nobody told me I would have to have hormone treatment for 6 months prior to that or maybe I had missed that. End of June I had a phone call from the prostate cancer nurse in Brisbane and she rings regularly to check if I am alright and she said we did not expect to find any cancer after the TURP but we have. This is not good for you at all it has pushed your Gleason Score up to 5 + 5. I haven’t been able to find anybody to talk to who has had a 4+5 or a 5 +5.


 


The only thing I discovered was on the internet where an American doctor had a 4 + 5 and he said 9 is the worst of the worst. Which basically left me in a bit of a tizz because I thought hell if that was the worst of the worst what’s a 10. I found that quite difficult. Then 3 weeks ago I ended up in hospital for 7 days I was having chronic breathing problems. All the way through from the day I took the hormones, and I have had an implant again yesterday, I get absolute chronic fatigue. I cannot even wash a car. I can’t do little things I have done for years. I was driving home one day and I couldn’t breathe. I pulled over and people called an ambulance. I had a 7 day stint in hospital. 


 


My Specialist explained occasionally androgen deprivation therapy can cause unexplained shortness of breath and that helped a lot. They have a cancer psychologist and he specialises in shortness of breath and fatigue. He has been wonderful for me. He gave me a good talking to that I had not accepted that I have cancer. Now I am waiting until the middle of this month to find out what the plan is. So when I was going to hopefully start the seeds in September they now talking mid-October and radiation in January 2014. 


 


That is where I am. I really appreciate the hospital, the nurses and the people who have done so much to make sure I am getting through this and family and friends obviously. The Cancer Council put me on to www.jimjimjimjim.com  Jim has been an amazing help he rang me and put me on to talking to you people. That is my story.  


                  


Chairman Bruce    Does anyone have any information they can offer to Person #2?


 


Person #33    I have advanced metastatic prostate cancer and I suffer from extreme lethargy and fatigue. Like you I can’t wash the car or split logs or sometimes even open a bottle of whisky which was very frustrating for a Scotsman. What I do is go to hydro therapy twice a week. I find it really good for keeping the joints subtle and having a good workout as well was walking every day. Keeping up the exercises is obviously very important. Good luck with your journey mate.


 


Person #2   Thanks. I do struggle walking. I can open a top off the bottle of scotch but struggle with a can of beer. 


 


Person #43   Just like you I was diagnosed with a Gleeson 9 in 12 out of 12 cores The amount of volume in that was between 80 – 100%. I have been on hormone therapy and been down the path you are about to take with the radiotherapy. There is life after all this, you may not think so at the moment but there is. I have a question for you, your side effects with the hormone therapy you mentioned you are getting Zoladex are you also on a daily antiandrogen pill as well?


 


Person #2    No they only gave me that for 2 weeks when I first started and 2 weeks when I had the implants after.


 


Person #43    I was going to say if you are on the antiandrogen as well as the injection you may find the antiandrogen could be causing most of your problems like I did. I am only quoting my experience here. I have gotten to the stage where I tolerate the side effects. I agree with what you are saying but I am tolerating them reasonably ok these days. I just wanted you to know that you are not alone there with your diagnosis and I am certainly not either. You look around the group and other places overseas you will find a lot of people very much in the same sort of boat.


 


Person #2    I am so glad to hear from someone like you. When the cancer foundation put me onto Jim I couldn’t believe the help that was out there and the support. It is alright to have support from family and friends but they don’t understand what you are actually going through. I must admit the hormones have knocked the hell out of me. I get the hot sweats at night time.


 


Person #35    I would just like to let you know that I have a Gleason score of 9 and I had exactly the same problem as you with the hormones, terrible. I was diagnosed 6 years ago and they gave me 3 years to live. I am still here 6 years on.  As far as the hot flushes are concerned providing you are taking those supporting tablets like Cosudex or whatever you will eventually nab it to a certain degree. I had exactly the same problem as you. 


My suggestion is to keep up the exercise that is absolutely important. It doesn’t matter how hard it is to do, do it. Because if you do it that does help. Make sure you have adequate rest through the day. In other words if you are exhausted after breakfast sit in a chair for 20 minutes and have a sleep after lunch and so on. If you do that you get a little bit of reprieve to carry on with the rest of the day. Your hot flushes will never go away unfortunately. All the best to you. You are in my thoughts.


  


Person #2  Thanks I am doing very well with that side of it. I have learnt lately that I need to sit down and rest and I need to tell people that I can’t talk anymore, I can’t go there, I just can’t go there. Since I have been going to the psychologist he has been an amazing help to me. I am thankful for that side of it. He calls it cancer related fatigue.


 


Person #21    Just a comment on the night sweats. One of the things that may help is making sure you have your evening meal pretty early and try and go pretty light particularly at that end of the day on carbohydrates because at the end of it all it turns into heat and if you are not exercising that heat has got to go somewhere and it comes out of the skin and makes you feel horrible. That is just one small point. The other one is having a fan near you is quite helpful. If you get a hot sweat you can just peel the sheet back and expose your chest, throat and head where a lot of the blood vessels are close to the surface and that helps to knock it back pretty quickly.


 


Person #3    I hate to use the term to keep a positive mental attitude although that is correct. Living your life of happiness and well-being is probably one of the best things you can do and don’t worry too much. Worrying is not going to fix it. It is not going to help. I am 80 years old and am in my fourteenth  year of survival. I went one year without anything when I changed medical oncologist and it was a year before anything took place really except Lucrin every 3 months. I stayed on that. I was on Zometa every once a month, that is all. Sometimes I wonder how important a PSA reading is I was well over the 3000 mark at one stage and felt great. How do you explain that?


 


Person #2    I honestly don’t know. A lot times I cannot explain what is happening. I don’t understand a lot of it. I am getting there.  


 


Person #3    I am off Zometa now and have got a new one that is called Denosumab, the one that I am on now, also known as Xgeva and Prolia. There are some side effects you can have but I have been on it for a month and I am having my second injection this afternoon. I haven’t noticed any of the side effects. That is a new one, has anybody struck it yet? I know it better by Xgeva. 


 


Chairman Bruce  Person #32 had a point to make we are getting close to 10 o’clock for the guest speaker.


 


Person #32    Person #2, just a quick one. I’ve got Gleeson 8 cancer and have been on continuous hormone treatment for 10 years now. I understand what you are saying about the side effects. If you are going to remain on hormone treatment for an extended period it is quite important that you make sure you get your bone density aspects checked from time to time. My endocrinologist and as well as my oncologist and they have recommended a couple of other injections once or twice earlier on but also maintaining proper vitamin D and calcium levels in the system. If you are going to be on hormone treatment for an extended period like me, more than a year or something like that then you need to make sure that aspect is being looked after for you as well.


 


Person #2    Thanks for that because that is one area the nurse made quite clear to me that I need to get into the vitamin D and calcium and have regular bone check-ups.


 


Person #21   Just a quick one. I am not sure whether the oncologist mentioned it but one of the other diagnostic techniques that might be relevant for you is a PET/CT scan. This scan is able to detect a pretty early stage soft tissue prostate cancer if it has metastasised to particularly lymph nodes that could be elsewhere. If you are getting negative bone scans it depends on the technique if it is a conventional bone scan it isn’t very sensitive unless your PSA is up well above 20. There is a PET/CT scan also for bones which they use a different contrast agent. It might be worth discussing those two possibilities as it may have a bearing on what’s the optimum treatment.


 


Person #2   Thanks I have been told I will be on hormone treatment for probably 3 to 4 years. I know I have got to keep a very close eye on the bones in particular.


 


Person #21    It is also soft tissue you have got to be aware of too. Not least the lymph node involvement or other and the earlier if you are in that situation then the earlier you can pick that up, as I am sure you will find from the guest speaker we are about to hear, the better. 


 


Chairman Bruce  Welcome aboard Dr Farshad Foroudi  


      


Dr Farshad Foroudi  I have been listening for a little while and you have a very good support group going on. So we have got a study open called ‘POPSTAR’. Which is the formal title pilot study of patients with oligometastases from prostate cancer to be treated with stereotactic ablative Radiosurgery. Oligometastases, oligo means few and we have defined that up to 3 metastases. The rationale of the study is basically the technology over the last few years has evolved so that we can actually give very high of radiotherapy with precision to the metastatic lesions particularly involved in bone. As well as the lymph nodes and soft tissue. It was originally developed prominently for lung cancer, in prostate as well as breast cancer there are increasing numbers of studies internationally. 


 


Most patients when they get metastatic disease they are put on hormone treatment but actually by ablating the metastases we have the possibility of getting rid of the largest bulk of the tumour remaining. There may be immunological benefits because when you destroy cancer cells the breakdown the body’s immune system may be able to recognise that and that might have implications for disease elsewhere. That is an area that may need to be studied. The study which is funded by the PCFA (Prostate Cancer Foundation of Australia) involves patients if they are thought to have between 1 and 3 metastases in the prostate cancer and along as the primary has been treated with either surgery or radiotherapy. There then maybe potential for the study. We organise a sodium fluoride test as well as a bone scan. 


 


We complete staging investigations and if there are concerns that there is only 1 to 3 metastases the treatment basically involves a number of questionnaires patients have to fill in. To see how they feel, pain before treatment. The majority of people, we have treated 8 or 9 so far in this study and all except one patient was actually pain free to start with. It tends to be a good indication that have been picked up with the PSA rising and the scans picking up lesions. We have also had a couple of patients where they are just presented with the prostate cancer they have got the prostate in situ as well as the metastatic lesions. In those cases it is suggested that the prostate be treated first and then review the patient with a scan after that. The treatment involves a radiotherapy planning scan. 


 


This is where the men lie on a CT scanner, they have a customised vacuum (blue bag) and this is around the body to stop movement and the CT is carried out. We then mark out the area we want to treat and the radiation therapist works out how many beams we use. About a week later the patient comes for their second visit. They come and have what we call a ‘mock-up’. Where the patient is on the treatment machine and we see if the treatment is technologically possible that there is no misalignment and all the positions are correct. If that is all okay a couple of days later the actual treatment takes place and it is a single treatment. 


 


It takes between half an hour and 40 minutes. It seems like a long time ,and it is a long time but the majority of the time is in positioning the patient because we want to make it as accurate as possible. The man’s position, he has the vacuum immobilisation and a combined CT scan is taken and that takes the majority of the time. The actual treatment is done in 3 to 4 minutes. As the technology is getting faster that component it is getting quicker also. It is still likely even as technology changes it is still got to be at least 25 minutes. Longer than traditional radiotherapy but the advantage it is a one off treatment as opposed to the prostate treated which can often be 37- 39 treatments. 


 


We then see the patient a couple of weeks later and we have another PET scan at 3 months and then one 18 months after treatment. 


 


The results locally are too early to say. Internationally stereotactic treatment has been used for brain lesions for 25 – 30 years with very good control. That tends not to be in prostate cancer but in other malignancies. There are four studies looking at patients who have got lesions that have spread metastases from the prostate treated with this technique published. They have all sort of shown that either hormone treatment can be delayed or the lesions basically don’t progress. We have a study for thirty patients then we will evaluate the results. ‘inaudible’  


 


Person #39   My husband has prostate cancer do you accept people on your ‘POPSTAR’ trial that have had prior ADT?


 


Dr Foroudi Yes we do. Some of the patients may have not had ADT but the majority have had ADT. We allow both androgen sensitive patients as well as those patients where the hormones aren’t working anymore. It is an entire continuum the main thing is the actual number of lesions. It has to be 3 or less.


 


Person #38    I had some metastasised black spots to the bone. They didn’t give me radiation until I started getting a little bit of pain. The first spot I had radiation on they did that for one day with a single dose. The two future ones were over 5 days. How do they determine to do one dose or the 5 doses over the 5 days?


 


Dr Foroudi You would have had conventional palliative radiotherapy and that’s what we have been doing for 20 to 30 years. With the radiation the main aim is to get rid of pain in the bone. What you received in the 5 treatments is what most doctors would be doing.   


This new study is quite different as we are aiming to get rid of the cancer deposits. We are treating patients who have the deposits but without the bone pain. It depends on where. What we are doing is a part of the study it is ethics approved and it is a funded study. It is basically seeing if it prolongs survival and the things that we hope it does. It seems technically possible and overseas studies look promising. 


 


Person #38   I had a tumour in my spine that they shrunk and then gave me 5 low doses on that.   


 


Dr Foroudi With the 5 doses the single treatment if you try and convert them it is about 3 to 4 times the actual dose. So it is what we call an ablative. It gets rid of everything. So it has got a different purpose.


 


Person #32  What is the difference between the stereotactic radiation that you are talking about and the normal radiation. Is the stereotactic radiation or the one you are using when you do the radiation very much more precise radiation than normal you would be able to get? Does that mean you can go anywhere in the body and use that with safety compared to normal radiation? Is the stereotactic more or less effective in getting rid of the tumours?


 


Dr Foroudi  The evidence with the stereotactic is that it is better at getting rid of the tumours. It involves much higher precision than what we have been traditionally able to do. It involves pre-treatment with CT’s, information is better, immobilisation – stopping the movement is better. Basically it is a non-invasive, high precision form of radiotherapy. We are using that in patients who have up to 3 tumours that have spread from the prostate to bone or lymph nodes. There are some limitations such for instance if it is right next to a big piece of bowel that may have technical limitations. Certainly compared to conventional radiotherapy you can do a lot more.


 


Person #38   When I mentioned the tumour in the upper section my spine after my first chemotherapy dose I ended up with a blockage in my throat. I had to go to hospital because I could not eat for 3 days. I couldn’t pass food. They said it had to do with the radiation I had on my spine affected my oesophagus.


 


Dr Foroudi  Traditional radiotherapy because of the way they angle it particularly if it is coming from the back. It goes through the spine and some of your oesophagus does get a dose. You can have some discomfort on swallowing but that is generally for a short period. I assume it would be a week or two.  


      


Person #21   On the technical side of the process I am wondering how the technique side of the process compares too particularly with what is going on in the US by Doctor Michael Dattoli. [Ed: Dr Myers video 21 December 2011]  He uses real time imagining and gauging of the radiation to cope with breathing and so on. Can you comment on some of the technology that is available to you at Peter Mac and how it compares to the best of what is around elsewhere? 


 


Dr Foroudi There are a couple of different competing plans. We have gating but we normally only use this for lung lesions it is not basically a way of taking risk relation into account. It is not such an issue for bones or lesions in the pelvis. It is more of an issue if you are treating the liver or a lung lesion. This isn’t something we generally do for prostate cancer. For prostate cancer when it spreads it is predominantly to lymph nodes and bones. We generally don’t need to use that technology. We have the technology available but it is not something that would benefit prostate lesions. 


 


Most places in Australia use a linear accelerator based system. All of the capital cities would have various active treatment equipment available. 


Perth at the Charles Gardner have put in a cyberknife. This is a specific stereotactic  piece of equipment. It has some benefits and some disadvantages compared to other forms of treatment. Sydney has a couple of centres to have their equipment. In Melbourne we obviously have it. The Alfred also. The Royal Adelaide does only brain lesions. In 15 years I have only seen one patient with prostate cancer where there are lesions on the brain. Most prostate cancer goes to bone or lymph nodes. That is what we are aiming at in our study. All of the published studies have been either bone or lymph nodes or a mix of the two.


 


Person #21    With the lymph nodes targets it tends to be sitting along the arteries or the major veins in the abdomen and pelvis. I was just wondering if there are any constraints with precision in those sorts of locations?


 


Dr Foroudi  The veins and arteries are not a problem.  


         


Person #21   I was wondering if there were any constraints with precision in those sorts of locations?


 


Dr Foroudi  The veins and arteries are not a problem with the technique. The bowel potentially can be. So if there is a lymph node with a large amount of bowel around it, it may be technically not possible to do the treatment. If it is just vessels, fat or surrounding soft tissue which is pre progressive issue none of the studies have shown problems with that.


 


Person #25   Is RapidArc a stereotactic?


 


Dr Foroudi  RapidArc is just a way of delivering the radiotherapy. It is used in stereotactic treatment and we also use IMRT and RapidArc to treat primary prostate, cervical cancer and lymph nodes. It is a technique that is useful to use in the stereotactic treatment. If you are having RapidArc treatment it does not necessarily mean it is stereotactic treatment. Stereotactic treatment is very precise and very few treatments. If you have been prescribed 5 treatments or 39 treatments it is highly unlikely to be stereotactic treatment. If it is 1 or sometimes up to 3 it is more likely to be stereotactic.


 


?    What does it actually look like? Is it a gun that can go in any direction into the body as opposed to the normal one which is a big circle around you?


 


Dr Foroudi - I don’t know how many people online who have had radiotherapy using a linear accelerator. It looks like similar equipment with extra bits on the side, the imaging and the software technology is slightly different, designed differently. You lie on the same sort of couch and have the immobilisation. The machine can take imaging and can treat from multiple angles. We normally use between 8 and 12 angles. More traditional treatment like the palliative treatments normally just uses one angle. It is quite a different form of radiotherapy. Far more precise and far more focussed. It is also resource intensive that is why we only treat people with up to 3 lesions. You go with the patients with the greatest benefits and that is why the study is designed to treat one two or three lesions. 


 


Chairman Bruce  There well may be a linear accelerator which is about a point, and the turntable for the couch also takes around that point, so that when a part of the patient is situated on that point, then you hope the machine with its accuracy within 1 mm in its precision then a beam of 2 mm with a 1mm target in the middle of it. All these treatments I guess are a bit larger than that.


 


Dr Foroudi  that is a great explanation. With the more modern machines they generally have the accuracy of the eye to centre often 1mm. Some of them take .2 and .5. We have a limitation the fields can’t be anymore smaller than 3cm. Below that our computer systems don’t work very accurately. Even if the tumour or lymph nodes is only 1x2cm we do have to treat a bit of the surrounding area to make sure we are treating it accurately and that our systems can cope with it. In a field that is smaller than conventional palliative treatment is often 10 to 15cm by 10cm it is quite a different volume of tumour we are treating with the high dose. Our aim is to get rid of the tumour and we hope there are some benefits with antigens in terms of the cancer breakdown and the immune system.  This is still investigational.


 


Person #38  Why can’t stereotactic radiation be applied to the prostate?


 


Dr Foroudi  It can. There are a number of studies looking at doing that I have seen published overseas. The problems myself and my colleagues find with the ablative treatment we are getting rid of the cells in that bag. Even though you are trying to get rid of the cancer in the prostate there is the urethra which is important and leads to the bladder and allows for the urine to pass out. You don’t want to damage that. If you ablate the prostate we worry about the long terms effects on the urethra which is right in the middle of all that. There are about 5 or 6 studies where they have used a mix of external beam radiotherapy and then stereotactic as a boost. 


 


There are another series of studies where they have just used stereotactic treatment. Most of them have been more than one treatment but it has been stereotactic treatment to treat the primary prostate. In fact we have written a review article of that and sent it to the local Australian and New Zealand Journal of Medical Radiation Oncology for review. So it is a technique that is possible. It is not one that we have been using. 


There is a planned study originating from Newcastle, NSW that we may join looking at a mixture of external beam radiotherapy, for four and a bit weeks and then two stereotactic treatments for the prostate. We think that might be a little better in terms for the urethra. More than just doing the whole stereotactic treatment and having the urethra in stereotactic treatment.


 


Member #30   Why do you have a limit of three metastases? 


   


Dr Foroudi  Some centres in the United States do five. As the metastases get greater in numbers it is suggested there are more and more of these that we cannot see. So we chose patients that are going to benefit from the stereotactic treatment. The treatment does take time and resources. In the trial we try to find a group to get the greatest benefit. Potentially in a few years’ time we may be treat larger numbers of metastases.


 


Person #43    With the radiotherapy treatment, I went through IMRT last December at that time it was mentioned to me there is a maximum dose you can have during radiotherapy treatment and then possibly palliative radiation would not be an option after that. Does that hold true with the stereotactic treatment you are talking about?


 


Dr Foroudi  Yes there is a limit to the dose of radiotherapy that can be delivered to any particular body part. So we have to take into account if the patient has had previous treatment. With the stereotactic treatment it is quite localised. If someone had the prostate treated, lesions not right next to the prostate we are able to treat. Treatment involving the prostate is well targeted these days. If there is a lesion in the spine it has to be well away from the radiotherapy field. The lymph nodes would be outside the radiotherapy field. We have had one patient so far where the bone lesion was in the pelvis, in the bone near the prostate. We used a limit of 40 gray to that area and we could not treat that lesion. It generally is possible if you have had radiotherapy to the prostate to get treatment elsewhere provided it is not too close to the very high dose that the prostate would have received.


 


Person #43     My second question there is I understand this is a study that is being done at the moment and the ability to get this treatment is very limited at the moment. Do any of the centres with the linear accelerator be able to do this treatment or will it be specialised in one or two hospitals in the capital cities?


 


Dr Foroudi The equipment is becoming more and more widely available. Most of the departments when they replace or provide at least two or three machines would be looking at getting the equipment. It not only has a role in prostate cancer it also includes lung cancer, melanoma and potentially breast cancer lesions when it spreads. At the moment only a few centres offer it. We are doing it as a trial. There is no cost associated with the treatment. It is all covered by the hospital and the study. In terms of the equipment it does have a cost and most departments over the next few years when they replace equipment will get equipment capable of doing it then. In most of the capitals at the moment there would be at least one or two departments particularly Royal North Shore and Saint Alfred’s, Peter Mac and the Alfred.  (Some of the hospital names the Dr Foroudi listed were (inaudible)  


          


Person #25  I understand you have other studies coming up and we would like to hear about them.


 


Dr Foroudi  I treat neurological cancers. As mentioned earlier we are doing the prostate cancer ‘POPSTAR’ trial. Described as treating metastases that have spread, one to three. We also have a study which is originating from Newcastle called ‘prometheus’ which will be patients who have high risk prostate cancer that hasn’t spread. Where they get a mixture of standard external beam and then two stereotactic treatments. That is currently going through ethics interstate and it is hopefully it will open here at the end of the year. That potentially has the chance of improving local control to the prostate. That again will be a fairly early study. Those are the two stereotactic studies for prostate. We also have one for kidney cancer. 


 


We still have a study called ‘RAVES’ which is looking at patients who have had surgery and high risk features such as positive margins or seminal vesicles involvement. Looking at whether radiotherapy immediately afterwards or radiotherapy delayed when the PSA starts rising which is better. That has enrolled 270 men and needs 400 to be completed. 


 


There also is another study we are hoping to open probably early next year which is looking at the addition of another hormone called Enzalutamide to patients who are going onto have hormone treatment for either locally advanced or metastatic prostate cancer. That study is not open at the time of the teleconference. 


    


Person #25     Why is it thought that different treatments might prime the immune system?


 


Dr Foroudi It has been quite well known that sometimes if you treat one lesion, lesions elsewhere may disappear. We don’t know the mechanism behind this is and we think it is immune related. It is an area of research. Even our unit is working with an immunologist and we are hoping to get some studies up where patients have treatment and we see that can prime the immune system. When the treatment happens the cells die and bits of the cells are released and the surrounding immune cells may be active and produce an adherent immune reaction. The question is whether that happens enough without any additional treatment. There are medications that can potentiate the action. 


 


It might also be the action in the future having both the stereotactic treatment and an immune potentiating drug. That is something looking very exciting. Stereotactic treatment you treat what is visible and get rid of the tumour and also release come antigens which the immune system will react to. It is still very much investigational. We are linking with the labs to look at it here. Not so much in prostate cancer but in melanoma particularly internationally their doing a fair deal of work. We are hoping to show similar things prostate cancer.


 


?         Is there any evidence that already happens with prostate cancer with Brachytherapy and high density beam radiation?


 


Dr Foroudi There isn’t great evidence at the moment with the primary. But when the primary is treated it is not an ablative dose compared to the stereotactic treatment With the stereotactic treatment even we have seen some cases in patients with lung cancer where we have treated a lung cancer nodule and another nodule has disappeared. The question is whether the same things happen in prostate cancer. It has also been documented in melanoma.  (Inaudible)


 


Person #21   The ideal of debulking particularly even if the primary cancer. Possibly of metastases also I had understood was related to simply setting it back on its exponential growth path so it has to start all over. Is basically not that it is an immune response that triggers?  


 


Dr Foroudi   We hope that it is both. First getting rid of the largest bulk is true. The new is one is what we hope is something that we will find and show in the future. At the moment it is all very anecdotal. People have treated a patient and they have treated one or two lesions and the other lesions have disappeared. There is more evidence at the moment for debulking, getting rid of the largest bulk. The immune potentiating effect needs to be proven and shown.


 


Person #41    Is the ‘POPSTAR’ trial still open for new participants? If it is how do I get onto it?


 


Dr Foroudi – We have enrolled eight of the 30 patients. It has been open for three months. It is only a single institution study. It is only open at Peter Mac, East Melbourne. If you contact me you can organise an appointment to be seen. I ideally hope that once this study is finished sometime in a year or two probably more likely to be two years to have a multi-site study. One which is run in multiple cities and multiple states. At the moment we need to finish the pilot study and see what its results are and then look at the bigger study. Anyone interested can either contact me through Peter Mac or I can give Jim my email address. It has to be a selective group of patients. The main thing is one to three metastases. Ideally with the primary already having been treated. We can organise treatment of the primary but we find it easier for us if the primary has already been treated by surgery or radiotherapy in the past.


 


Chairman Bruce Thanks Dr Farshad Foroudi for the informative presentation to the group.


 


Jim_Marshall   We will put your contact details on our website and send it out to all members. Thank you very much Dr Foroudi.


 


Dr Foroudi It has been a pleasure and I am happy to be contacted. The study is looking for recruits.


 


Jim_Marshall   Introduces  Person #4  to talk. 


       


Person #4    I am from Central Queensland and I am coming up to 67 years this year. It all started with an employer funded annual medical check-up which included PSA prior to my retirement in 2010. The results of a January 2011 test showed a marked increase in PSA. A DRE and Trus biopsy was conducted. The results were an aggressive cancer and a 9 Gleason score. Bone scans and CT scans followed and showed the cancer had metastasised in the bone. Radical prostate removal was ruled out. 


 


Hormone treatment Eligard three monthly was started in March 2011. Follow up PSA showed a decrease in the level and indicated the treatment was working. Bone and CT scans showed slight decreases in bone metastases and shrinking of the prostate tumours. 


 


December 2011 the PSA started rising which meant the cancer became resistant to the hormone treatment. There was hope to get on a trial of MDV3100 but one of the criteria used for this was the PSA had to be below two. Eligibility ruled out that trial. By May 2012 my PSA had risen to 4.6. A bone scan indicated increase cancer in the bone. Chemotherapy via a trial called ‘inaudible’ which started in May 2012 and out of the three doses I managed to get Cabazitaxel and that proceeded on a three weekly basis in Brisbane at the Wesley Hospital. 


 


By November 2012 I started to have blood in the urine. By mid-November chemotherapy was stopped due to the bleeding. PSA had stabilised. I went through eight cycles of treatment. 


 


During those treatments I needed to self-inject Neulasta (pegfilgrastim) to keep my white blood cells from going too low. At that stage I also started Xgeva for bone strengthening. PSA was monitored on a monthly cycle. 


 


February 2013 showed minor increases in the metastases. The doctor reviewed in April 2013 and recommended another treatment. He had some samples of Zytiga. I am not sure behind the reasoning apart from hoping it would go onto the PBS but he started me on one tablet per day on a full stomach, with a review after six weeks. The CT scan in April showed progression in the metastases. After six weeks on Zytiga my PSA had dropped from 3.8 to 0.44. At the trial meet week mark PSA was at 0.20. At the eighteenth week mark the PSA was 0.11 which was around August and Zytiga was now on the PBS. 


 


I am now on the four tablets of Zytiga on an empty stomach with Prednisone, 5mls a day twice a day. I also have to have a potassium supplement as it pushes potassium low. Blood pressure has gone high a lot higher than normal so I am still trying to get this down. That is to be continued now. That is where I am at.


 


Person #21   What a great story.


 


Person #43    Did they continue with the Eligard as well as the Zytiga? 


          


Person #4    Yes, Eligard three monthly. Yes I am on both. I will be on it for the rest of my life.


 


Person #21    I would just like to clarify an earlier point that you made the original Zytiga was one tablet on a full stomach. That is something I haven’t heard of before. I gather the effect of that it increases your absorption. Was that a conscious thing the doctor explained to you?


 


Person #4   I was at the stage where I needed new treatment and the offer was would you like to try Zytiga at this rate. Taken on a full stomach. As you can see by the figures it is very exciting. I did ask him when I went on to the full dose. Why am I going onto the full dose? The one pattern that works and he tried to explain along the lines of the peaks of the medication being very sudden and I do not know what that has got to do with the cancer but the dose rate being with it peaking rather early than with the fall. It would peak but at a slower rate and it would take a while for that peak to drop back. I don’t really understand the reasoning. I was not using the prednisone with the Zytiga initially, but I am now. My GP who is trying to get my blood pressure under control looked at the chemistry of it all and said I need to be on prednisone to try and get my blood pressure under control as well.


 


Person #38   Is taking the four tablets safer or taking the one with the meal?   


 


Person #25    Dr Snuffy Myers has spoken about this and is publishing material in the next week or two. It multiplies the effect of the drug if you have it with food. It can be quite a dangerous drug if not kept under control. Anybody taking it with food would need to be aware that there are some risks with that.


 


Person #4   My medical oncologist may not have explain it that way but it was an option to have Zytiga in a less costly way until it become available on the PBS.


 


Person #3   I was on Zytiga for nearly 12 months. It has been interesting to hear your story. Mine was one hour before or four hours after. It was four of those capsules daily. Quite different to yours on a full stomach. 


 


Person #21   Just a quick one, mine is also related to Zytiga indirectly. I had the interesting experience of two things happening at once. I was a ADT3 which included an anti-androgen, Cosudex with Zoladex. I went off the antiandrogen in terms of eligibility for a trial on Zytiga I was getting three consecutive rises above two so was not eligible at the time. Subsequently I went back onto an antiandrogen in the form of Nilutamide which is one of the three major options which I had not tried before. I was using that at the same time I was trialling Zytiga. The effect was the PSA rose rather sharply from three and a half to about six and a half within a month or so. My medical oncologist was away overseas so I took it upon myself to stop the Nilutamide. 


I was aware that there was a response called the anti-androgen withdrawal response where the smart little critters inside the nucleus of a prostate cancer cell learn how to adapt to anti-androgens and use them as a food rather than a poison. The effect was dramatic as soon as I came off the Nilutamide the PSA dropped sharply back to where it was previously. I am still on Zytiga plus Zoladex and am waiting the next exciting episode of the PSA. The phenomenon of sometimes withdrawing an antiandrogen in this case Nilutamide at least in the context of Zytiga seems to give it the elbow room so it can do its job. So just be aware of the phenomena that may be something to talk to your doctors about if you are in that position.


 


Person #25   Another phenomenon you should be aware of with treatment, that some patients don’t expect, in the men who have had successful treatments with it, the PSA doesn’t initially drop. Another explanation may be you have reached the stage where the PSA does drop with Zytiga. As I said it doesn’t drop immediately. The second phenomenon is in the bone scan. Most other successful treatments you can sometimes see the tumours shrink down in the bone scans. With Zytiga with successful treatment apparently the scans light up immediately.


 


Person #21    In my cases there not bone metastases but lymph node metastases. Due to Dr Foroudi’s POPSTAR trial, as a candidate, I got the opportunity to look at the bone metastases and there are none. On first look the lymph node metastases pretty well shrunken except one or two. I hope they will shrink or that I can jump onto stereotactic. One or the other.


 


Person #38    I am on Zoladex. I was on Nilutamide for a while and then they took me off it because they said it wasn’t working. It might be the same reason you were taken off because the cancer was using it as a food.


 


Person #21    Like Jim said it sometimes hard to see up the causes from the effects. In my case I was on Zytiga for a couple of months the effect of that in conjunction at that time with Nilutamide was a sharp increase not just a stabilisation. I mean a doubling in a space of a couple of months. That is a pretty sharp doubling rate and the halving rate you calculate coinciding with the elimination of Nilutamide in that context was equally as dramatic. I think it is an indication of the withdrawal effect, not a guarantee. I have been on Zytiga for quite some time and I am particularly happy with it. I will be on it until it ceases to be effective. At the moment all the trends are good.


 


Meeting Closed.     


                         


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


 


Reminder for men and their partners in northern NSW or southern Qld: Face to Face Luncheon Greenbank RSL Saturday Nov 9 2013 at 11.30 am.


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