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Men with advanced prostate cancer discusses diagnostic scanning with Dr Kwang Chin: Minutes 28 March 2014


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Minutes courtesy of Secretary Nev Black:


Advanced Prostate Cancer Telephone Meeting Minutes 28 March 2014

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

Apologies:  Jim Marshall, Tony Maxwell, Gary Conyers, Jeff Buttfield

Guest Speaker:  Dr Kwang Chin Diagnostic & Interventional Radiologist at the Peter MacCallum Cancer Centre  www.petermac.org 

Guest’s subject, various medical imaging technologies relevant to primary, locally advanced and metastatic PCa that currently available, and where they can be accessed.

Chairman Bruce: Introduces and welcomes Dr Kwang Chin.

Kwang:  The imaging that we have for patients with prostate cancer. The ultrasound we use it most often when we are doing biopsies of the prostate. We can use ultrasound to target possible areas within the prostate that look abnormal or suspicious and put them under direct visual guidance. We also use ultrasound to guide and place gold seeds which the radiation oncologist can use to target radiation treatment if they require. CT examination use X-Ray it is potentially a big bonus. Patient goes through the scanner. The CT examination is mainly used initial staging. If someone has been found to have prostate cancer by biopsy the patient would be put into the CT scanner and that uses X-Ray to check the whole body for any cancer anywhere else in the body to gauge what treatment that patient receives. 

The MRI has recently come into its own in terms of prostate diagnosis. The MRI has been around for 20 to 30 years but only recently due to the advances in technology are we able to image the small prostate glands with quite high resolution. So an MRI can potentially non X-Ray dependant it works by magnetic fields. With the MRI we can non-invasively look at the prostate and identify any areas which are suspicious or abnormal. In particular with patients with a raised PSA but no cancer on biopsy, we can use the MRI to monitor the patient and if something changes or becomes abnormal we can then target it with a biopsy. This is where the latest advancements are happening to MRI and MRI guided biopsy treatment.

As for the nuclear medicine studies, we have a whole range of potential up and coming advances for prostate cancer. One is called sodium fluoride PET scan. It works by attaching a radioactive treatment through the atom and it is injected into the patient and it is looking for any bone metastases from prostate cancer. This agent is more sensitive than a traditional bone scan. 

Fluoro Choline PET CT Scan, it is also similar to the bright scan we use it with an agent and this one can to get soft tissue rather than bone looking for metastases from the prostate cancer that has gone to soft tissue like the lungs, liver or kidney to look for any spread outside of the prostate.

 One that is on the horizon that we hope to bring to Peter Mac in the next year or so is the use of prostate specific antigen PET study. It is yet to be introduced to Australia. It is a very specific. It targets the membrane that the prostate and the prostate cancer have, it is very specific and it should show up any metastases more accurately than in a one dimensional form. This is a very brief overview of what we have at our disposal for the diagnosis of prostate cancer. I am happy to answer any questions.

Chairman Bruce  That to me is a very up to date and conclusive and very descriptive way of the investigations so I am sure some people will have some questions. Let the questions begin please.

Person #15:  I am interested in metastases in lungs. I had just a couple of days ago a CT Scan. There has been what you call sidules or nodules in my lungs. They think they have diminished with chemotherapy but there remains some lining of my lungs seems to be affected it shows up with a white line around the edges of the scan. Are you suggesting there is a better agent now?

Kwang:   I will put it to you in a different way. If the nodules and the lining have been seen on the CT scan before with just what you said, it is better if you follow up with the same test you had before. If you go to a different test it may muddy the waters because you can’t compare like for like. The size may be overestimated or underestimated if you use a different test and you will not know how this nodule is behaving if you start changing. My take on it if you see it on one test and your given treatment whatever treatment it may be radiation or medication to follow-up using the same test. If I am suspecting a lesion somewhere else but you can’t see it on one test then you should go to a different test because you are looking for something that is not visible on the first test. If you start changing patterns you end up in the same situation of not knowing what it is doing.

Person #17:   My question is in regard to testing or surveillance of metastatic bone cancer. Am I better to stick with bone scans or would I be better to consider a PET Scan?  

Kwang:  If your bone metastases have been seen and identified on a bone scan before and you have been having treatment continue with the bone scan. If you have a PET scan you may find other lesions that show up on the PET scan which may or may not be related and you may be clouding the water with how you are responding to your treatment.

Person #14:  I am interested to know your views on a treatment regime which I understand Peter Mac is using for instances where there are three or fewer bone metastases, not causing any symptomatic problems, as to whether it is considered a preference to leave them or to zap them very early. How that may affect a longer term diagnosis to deal with them early even though they are not problematic?

Kwang:  Patients who have less than three bone metastases the jury is still out as to what the long term prognosis. That is why we are having this trial and this study. If they have three or fewer identifiable metastases they go into a trial where these metastases are given radiotherapy. The radiotherapy is essentially, high radiation delivered directly to the lesion in the hope that it will prevent further spread and have a better outcome. Whether it actually does or not we don’t know, which is if patients do have fewer lesions we are giving options for this treatment. This is what we do at our hospital.

Person #14:  I understand it will be sometime before this trial produces a justifiable hypothesis?

Kwang:  This is going to be a long term study because patients with prostate cancer do very well. Radiation is not without its own problems but we should know once we get the preliminary results.

Person #11:  What is the most appropriate imagining for lymph node metastases in terms of initial detection and monitoring treatment? What better ways are coming down the pipeline?

Kwang:  The current way we do it right now is if the patient has prostate cancer identified by a biopsy the most widely available test through all the clinical CT examinations. That will tell you looking at all the lymph nodes for size. You then can classify the lymph nodes 10 million to 1 million in size would be beyond the normality that is the most current right now. Do a whole body CT scan and we know the prostate lymph drainage is through the pelvis and those are the lymph nodes we look at first so we start looking for enlargement in the pelvis. If you have got early lymph node involvement the lymph node hasn’t had time to grow or enlarge and those are the ones that are sometimes not picked up. 

So the next test or development we are doing is to use MRI. It is potentially the same thing the MRI of the pelvis looking for the lymph nodes but that too is going by the time. If certain characteristics that can show up on an MRI which make it a little bit more sensitive to picking up involved lymph nodes but it is also quite limited and not that perfect. MRI is the conventional one available right now. 

Now we go into the research and experimental treatment. So now they are developing MRI agents where an iron atom is added and it is injected into the patient with the understanding that a lymph node that is involved with cancer would pick up this agent and will appear different. So we are going to a functional study. 

The other branch of research is to tag on some traces and agents which directly attach to the cancer cell membranes and we can pick this up from the PET Scan so they will emit radiation when they’re going where they are not meant to go and we can pick them up. So there are more studies coming online with detection with lymph nodes. Currently right now it is CT, and MRI then the experimental MRI and further on from that it will be the prostate specific antigen PET CT. 

The PET CT Scan has been around for about eight years and it works by studying the glucose molecules. It studies the glucose turnover of all the cells. It is also being used now to try to look for lymph node involvement in prostate cancer but it is not widely available at the moment. It has its own issues because lots of cells use glucose and in the pelvis adjacent to the urinary you have a high concentration of activity. It is good but it is not the holy grail of imaging just yet.

Person #11:  So functional MRI with one of the newer radiographics is the way to go?

Dr Kwang:  Functional MRI will take into account that together with the tracer and the MRI and science. Everything we do additional activity and productivity to what we do?

Chairman Bruce  Is lymph gland geography history or so problematic we don’t use it these days?

Kwang:  It is an historical old fashioned study we used it in the past to look at lymph nodes and the drainage. It is used in prostate cancer but I don’t think it is one of our current established conventional treatments. It involves injecting the lymph node with a dye and see how it flows because it is done under real time radiography you can’t really target what’s abnormal or normal lymph node is there or not by looking. It is not really being used at the moment for prostate cancer.

Person #26:  You mentioned a glucose scan before, we hear sometimes talk about a sodium fluoride scan where does that fit in to it all? 

Kwang:  A sodium fluoride scan is mainly looking at the bones. It is potentially a bone scan that has been better improved by a few magnitudes in activeness. It is targeted on the bones it works by attaching the fluoride like molecules onto and is picked up by bone turnover. A bone scan the way it is done the images are two dimensions so you have a camera in front and at the back. So this fluoride scan uses a PET CT so the radiation emitted by the bone and the lesion are crossed referenced to a CT Scan. So you are much better to localise what is picking up the tracer and you can correlate it anatomically with what bone and how it looks on the CT scan. 

It is not conventional treatment yet and it is not widely available in Australia but we are finding it is very useful in instances where the bone scan may or may not something with a grey area and we do this clarify the issue. It shows promise and should be used more widely.

Person #11:  Can you correlate the sensitivity of the various methods bone scan, sodium fluoride test and perhaps the MRI with PSA levels in terms of sensitivity?

Kwang:  CT is a very good screening tool it is very sensitive but not risk specific. Patients can have a high PSA for a whole number of reasons with prostate cancer. MRI is very good for prostate you can tell what it looks like you can know what is normal and abnormal but again you are looking at an image and there’s no functional element to it at the current moment. 

With sodium fluoride you have a functional element to it where only the abnormal areas will be picking up the tracer and will be detected. The ranking in terms of therapy CT you have got the PSA you have got patients without the prostate cancer in it. The MRI which is also pretty good but it is not completely 100% in treating what is normal or abnormal. Then you have the sodium fluoride which is used for men with prostate cancer looking at abnormal bone lesions.

Person #11:  So if you have got people in the advanced cancer category particularly with PSA recurrent as distinct from yet as proven metastatic sites, is there a level of PSA at which for example bone scan becomes detectable  or whether that is a lower level for other scanning techniques where you are looking for where the cancer might be?

Kwang:  The way we approach it that if someone has got prostate cancer with a baseline PSA. If the PSA rises and there are suspicions of spread we currently use a bone scan because it is the most widely available and it is the most accessible test. If a lesion shows up on the bone scan, that is great. Then you can monitor it and with treatment see how it is then seen on the bone scan. If there is rising PSA and no activity and the bone scan is negative then we still that is the question, where is it, or is there metastasis? Then we step it up a level, then we go to the sodium fluoride scan and that is more sensitive, to determine where or if there is a metastasis anywhere else.

Person #26:  Have you had involvement with the trials with Xofigo or Alpharadin to see how it is working on bone mets?    

Kwang:  No I have been directly involved.

Person #1:   I was just wondering if you could comment on my situation. I have been found to have a 5cm deposit on my sacrum, which is causing considerable pain, which the specialist did not pick up for quite a long time. My specialist felt because there was no increase in the PSA it was to do with the spine. Therefore it wasn’t treated for about six months. There was still no increase in PSA. In the meantime it has also spread into my lungs and it is a pulmonary metastases. 

I had 10 radiotherapy sessions to the sacrum which decreased the pain considerably and then I have been having chemo for the lungs. They call it a mopping up operation. I have been having Gabapentin and Etoposide and I have had three sessions of that. I was just wondering if you could comment on my general treatment in particular the no rise in PSA. My Gleason score was nine.

Kwang: When you have a high Gleason score it gives the idea of the aggressiveness of the underlying tumour behaviour. A Gleason score of nine is a quite high score. We do see some cancers, for whatever reason, don’t produce PSA. Some patients can have pretty advanced cancer and not have any rise in PSA whatsoever. 

They are not common but we do see those patients around. Those patients it can be a real challenge to monitor their treatment because PSA blood tests usually monitor how you are doing. Then you have to go on the structural appearance of the CT and MRI. In your case the no rise in PSA can be compatible especially when you have mentioned that you have got lung lesions as well and you're lesions at the size of 5cm lung lesions.  If the kind of tumour you have starts with PSA you would have a very big increase in your PSA. So I think in your category your cancer doesn’t use the PSA in which that is how it is.

Chairman Bruce  I think Don mentioned this a month ago I had to raise the question if they haven't got a prostate cancer deposit or something else I think I asked Don if he knew if the was sporadic, which would favour prostate cancer or what.

Kwang:  Most prostate cancers are sporadic generally speaking 80-90% is sporadic that means on the bone x-ray or CT turn white it becomes denser. So you also see the other 10-20% of patients whose bones metastases are not sporadic, they appear black. So having a sporadic lesion with prostate cancer does give you a pretty high chance that it is metastases, but not always. You do have patients who do not have the typical appearance they have opposite with dark areas.

Person #20:  In the US some people are using Coloured Doppler Ultrasound for imaging. Is anything being done with that in Australia? They are using it to look at the prostate to identify areas with high blood flow with the tumour having a higher blood flow than other parts surrounding it.

Kwang:  The Colour Doppler Ultrasound examination and it works by examining the flow the velocity of the blood. Currently we do not use Colour Doppler to monitor the prostate for a number of reasons. 

First it is quite hard to get a scan of the prostate you would probably need an examination through the back passage. Even then the prostate is very small and the Colour Doppler is very prone to (inaudible) and the smaller the structure you are looking at the less confident you are of making firm diagnosis is very, very, low the whole way we (inaudible) is uncomfortable for the patient. We have other more non-invasive options like MRI is not as uncomfortable. 

The Colour Doppler is very operator dependant and quite a high level of continual not used every day to get very good. I don’t think we have the numbers to maintain that in Australia high volume for this study.

Person #11:  Can you make a reference to the availability of the different (inaudible) to the extent which they are covered through the health care system?

Kwang:  Ultrasounds can be bulk billed. Most radiologists that I know of will bill Medicare for 100% of the ultrasound.  

Examinations are also covered under Medicare. So if you go to a bulk billing radiology centre or public, CT is covered. 

Medicare does not cover MRI for prostate at this moment. The government is still evaluating the positive effectiveness of the study. In Melbourne for there is a bit of a variation in cost for MRI examinations and it is around $300 to $400.00 for one MRI test. That unfortunately is not Medicare rebateable. So the patient does the MRI for the urologist, then it can be either done in a private centre for that cost and then it would depend on the health insurance if you get a rebate or not. 

The situation for Sodium Fluoride and the Sodium Chlorine are all in the research category and it is not an established test as yet. In a couple of ways you can at Peter Mac. If the patient is in a trial for example, Sodium Fluoride or Sodium Chlorine trial, then you can get the tests as part of the trial that is how it works. If you are not in the trial then there will be an out of pocket cost to have the tests. The reason of course it is that the traces themselves are very hard to produces and costs quite a bit in terms of to buy them. That is why there is a cost attached to it.

Person #11:  The availability generally obviously bone scans and CT scans are pretty widely available. Are you saying MRI presumably is becoming available at least in the major cities?

Kwang:  Ultrasound and CT scans they are very widely available, almost all radiologists have them. MRI because the prostate is such a small organ you need to have a very high what we call high resolution MRI. The MRI developed in the last 10 to 15 years would not able to cope with the high resolution required. That is the reason why only in the last few years we have, 3 Tesla MRI, the sufficient resolution to see the prostate, so all prostate MRI's need to happen on the 3 Tesla Magnet.

Person #11:  Are the 3 Tesla MRI units available outside the major capital cities are they present for example in the major regional cities?

Kwang:  I am not sure about whether the major regional cities but I expect not and the reason to be given within the metropolitan itself it is not a very widely available machine. Slowly coming on line now the public hospitals 1.5 Tesla but there are less than five Tesla magnets in metropolitan Melbourne itself. There are even several hospitals in the metropolitan area that do not have a 3 Tesla magnet.

Person #11:  The major cancer centres that are being funded federally under the regional hospital programs, you are not aware of any 3 Tesla MRI in that program?

Kwang:  I am not so much going on nationally. I can only tell you for Melbourne we have a 3 Tesla magnet and our partners also have a 3 Tesla magnet. So we do have quite a bit of capacity performing MRI for cancer patients.

Chairman Bruce  Breaking news here in Queensland, is the Wesley Hospital's new research report from MRI for scanning and guided biopsy for small lesions in the prostate.

Kwang:  The last prostate world congress that was held in Melbourne last year, I actually listened to that speaker from Queensland. He was presenting his data for this very area. So what they do right now if patients have a raised PSA they go on active surveillance they have regular PSA management/measurement. If there is an abnormality have a biopsy on the prostate. 

So what the guys in Queensland have done is that rather than do that do an MRI and any abnormal areas directed with MRI guidance. So if there is an area that is not quite right on the MRI you guide the needle biopsy under MRI control into the area that is abnormal.  This is an area that we think will change quite dramatically in the next few years. 

Rather than taking a random 20 biopsy from here there and everywhere we are more focused and targeted on the area where we think it will be abnormal. The problem with this will be availability and cost. It takes a long time to do the MRI scan and the biopsy and MRI is not funded by Medicare. 

So we are going to make a case for the government and the Medicare system for funding because I think if it is not funded then I think you're kicking yourself. There is no other way to put it.

Person #27:  I have paperwork in front of me saying the whole process takes about 30 minutes perhaps that is when they do the biopsy after the scan?

Kwang:  The biopsy itself takes 30 minutes but you need to account for preparation time to clean the area. From my experience I haven't done it myself this process takes about an hour. You have got the 45mins of MRI that was done in the first place so you have got a total of two hours. Two hours it is a long time and a common scenario for a large number of patients there are going to be instant resource implications which will need to be addressed. In fact on top of it there will be a lot of demand as well.

Chairman Bruce   If you are associated with any preparation papers to get funding from Medicare MRI checking, I think that people should bear in mind one of the problems with the current system it is not infrequent problems of infection and sometimes hospitalisation and those sort of things put a cost.

Kwang:  I am not directly involved in any Medicare. I know that it is being looked at by the government at this moment some type of rebate for prostate MRI.

Person #20:  I think Peter Mac has a trial measuring circulating tumour cells to measure the effectiveness of the radiology treatment?

Kwang:  I am not directly aware of that trial. There are quite a number of trials and this could be one of the smaller trials that are around. I cannot comment directly on the trial but it seems like a sensible idea.

Person #11:  We have seen that we are facing a bit of a rock and a hard place with future  health care costs all of the diagnostic tests you have described becoming increasingly more expensive as are the therapies, particularly the drug therapies. I am not sure where we are heading with all of this.

Person #2:  You are a great speaker and it is so nice to be able to understand what you are talking about. I have a Harrington Steel Rod in the base of my spine and I can't have an MRI and I have got a Gleason of 10. A CT Scan is all I can really have.

Kwang:  Because of the steel rod in you back it makes an MRI impossible you would not be able to get an image. It is also a little bit dangerous with a big magnet pull at your rod so that is why you can't go near an MRI. CT Scan and the other (inaudible). 

The markers Sodium Chloride and Sodium Fluoride and the PET Scan can all be used because they are all CT based and they all work by attaching the traces to the element which directly attach themselves to the cancer. So there are definitely other methods that we can do to investigate or monitor. It would be accessibility and availability. There are more experimental PET studies they are not widely available. I think if you are in a regional centre CT would be the best way to go.  

Person #17:  Can you just clarify MRI scanning is basically looking for soft tissue invasion and is not very useful as far as bone metastases discovery?

Kwang:  You are quite correct. The reason why MRI won't, like a very zoomed up photograph you cannot image the whole body with MRI with any great detail so all you see in MRI of the prostate is a beautiful view of the prostate which is 50% of the image and you see a little bit around it and that is about it. You won't see anywhere else basically in the pelvis higher up in won't be anywhere near the chest you won't see the liver or the spine even. It is a very good test and it is very focused you only see one area. It is like reading a book with a magnifying glass and you cannot move the magnifying glass you are stuck in that one area. 

So it is very good for soft tissue invasion, if you are going to have prostate cancer and considering an operation you will want to know whether the cancer has spread outside the capsule. In this case MRI is very good because of the magnification and tells you exactly if the cancer has spread because then the surgery to take a little bit more to make sure you get everything but it doesn't tell you what is going on in the spine, chest or the liver or anywhere else. That is why we would need the CT, bone scan and other PET scans.

Chairman Bruce  I would like to say on our behalf thank you very much to our guest speaker and we are very grateful for your contributions.

Kwang: I would be happy to come back anytime.   

Person #27:  I am someone else who has steel bars in their rear end. I had the lumbar area with spinal stenosis they sent me for an MRI and I was waiting for the guy to come back and say you did waste your time. It will be interesting to see what the response is when I get to see the guy who wants me on my belly again and get back into my spine.

Chairman Bruce  Usually they check whether you have got anything metallic anywhere, like take your watch off . You can't take the steel bars out. I have got some wire around my left knee cap because of years ago. It doesn't upset the gadgets at the airport as they are not magnet. There are metals that are not magnetic. The thing about MRI as I recall it is depended upon basically hydrogen in the body and that risk in motion things that have got water in them which is 70% of our body. It is not very rich in bone which is calcium and phosphate, in the main, ok there is bone marrow.

Person #27:  I don't know what the agent was they injected me into my vein obviously a bit of contrasting. It will be interesting to see the procedures having been down this route once before I am not keen about going through it again and taking two years to get walking again.

Chairman Bruce   MRI is supposed to be excellent in brain and spinal cord because of the padded tissue within the area.

Person #27:  So this long term use of androgen deprivation therapy despite the fact that you have been trying to do everything you can possibly do to by keeping calcium, magnesium and your proteins at the right level.

Person #11:  Sodium Fluoride PET might be the way to go given the constraint on MRI. Sodium Fluoride PET  will definitely show up any bone mets.

Person #8:  I have an update as it has been a while since I have been on here. I am nearly nine years into survival. I have a Gleason score of 8 a PSA 24 and metastatic to the right Acetabulum

I have been on Eligard monotherapy therapy for all this time. The last couple of years the PSA started to rise and last year it went from 20 to 40 just before Christmas. The oncologist thought it was time to act because we and been letting it go I was feeling pretty well. Last time I had a TURP, a urinary problem and I had to have a small operation for that and that went ok. 

My PSA kept going to 40. He prescribed Anandron. He was concerned whether it would work or not. I go Thailand quite regularly to help people and over there he asked me to have a blood test every two months. I had the blood test and the doctor didn't want to tell me the results because he thought it was wrong. It came in at three. It went from 40 down to 3.3. 

The oncologist there thought that was a bit unusual. We tested it twice and it still came in at the same. I came back to Australia and had my Sullivan and Nicolaides test for my urologist and it had dropped further to 2.7. He was a bit amazed about what had happened and I thought I would share that. Apparently this drug is not widely used as I understand, Anandron which is anti-androgen blockade. It has had a dramatic effect on me.

Person #27:  What sort of side effects did you have?

Person #8:  Initially, I am pretty active, and I felt a bit crabby for a while. There are side effects but I did not have that many. I must admit I was not entirely healthy and I was doing a lot of chi gung and I was seeing a Chinese doctor as well and had a lot of Chinese medicine, acupuncture and things like that. I don't know whether that helped, maybe it did. 

I haven't been doing it since I got back and it just kept going down. The other thing is I have got plenty of energy. I am playing the best golf I have been ever playing.

Person #14:  What was the name of the blocker? 

Person #8:  The trade name is Anandron, also known as Nilutamide. It works slightly different. I am still having the Eligard and I didn't expect to have that dramatic drop. I haven't seen the oncologist who prescribed it because I didn't need to. I see him in two months’ time and sometimes these things they don't work for very long anyway. When I look at the research I think, yeah, maybe I am just lucky I had a good response. I thought I would just share that because I am not sure if anyone else is on that drug at all?

Person #23:  I was on the Nilutamide that was Anandron as a combined androgen therapy when I was first diagnosed with the Eligard. 

I finished up with the side effects from that they were so severe with me, I finished up with that medication. That is interesting to hear that it is different from person to person. I was nearly a zombie with that stuff.

Person #27: We all react very differently. I have survived 14 years they gave me a one in three chance of surviving five years in January 2000. I had to finally succumb to them pouring poison into my veins of Taxotere and Prednisone in June of last year .Finally got the PSA down to 59 and I said I am not going through any more of this. 

So I got onto the Zytiga, like you said, you get different reactions from each individual with the same treatment. Have any others been down this route with Zytiga to try and know what side effects you guys have had? So at the moment what has had me fascinated was my last PSA at 59 with the chemo and I had a blood test the other day and it is still hanging around 1.3. I have never had it that low in all my life. I was on Zytiga but I had to stop taking it because of the side effects. 

I didn't think my liver would never come back. Just within the ALP and AST the highest reading is in 40 and I am just on the 40 reading now. So I put the oncologist off last week I said I will go and have a three monthly blood test then we can decide where we go from that. I was just wondering if anyone else has been taking this stuff and their reaction to it?

Person #7:  Mine is in quick concession, Anandron and then Taxotere and now Abiraterone. My initial response to Abiraterone was to drop the PSA by 50%. From that point on it continued to rise about around 150 now. The sense of wellbeing I have had while on Abiraterone has been far better than I have had in the last three years. It has been a great thing for wellbeing. The only side effects I notice is the fatigue. It is amazing the way I hit the wall, I feel fine, I am going great, and then all of a sudden I have to lie down. Has anyone had Cabazitaxel?

Person #26: One of our members not present today had Cabazitaxel. He had it really early in a trial and it made him really sick and couldn't handle it. Then he went back on it again late last year. The first couple of days he handle alright. Then they upped it a bit then he was suffering really badly from it, but that is just a trial of one. As it has been discussed today just because someone doesn't do well on it doesn't mean to say the next person will not have an excellent result.

Person #7:  I have been reading up on Cabazitaxel and its side effects can be most difficult. Given my history of rapidly failing these escalating therapies my medical oncologist is saying you're only a 30% chance of getting any benefit from Cabazitaxel. I was just wondering whether anyone has been on Cabazitaxel, tried it, gone off and what they had done next.   

Chairman Bruce  I think that even if it is a 30% chance of response you get with Cabazitaxel that means somebody might be in that 30. The only way to find out is to maybe have a go and see how you do or don't like it and see what your PSA says. If your PSA is elevated and if it sort of improves you can make up your mind whether you want to thrash yourself or thrash the cancer. Unless you have a try how do you find out whether you will get a response? If you start on something, you check it, you check against that response. You check with the agent you are using yourself and PSA. If you say you have had the Cabazitaxel and it failed you even on one go then you might be up for Zytiga. 

Person #7:  I might have to go back to Ketoconazole or something like that together with prednisone which I believe is easier on the body. The trial reveals the survival increasing by using Cabazitaxel if only three to five months anyhow.

Person #11:  I just have a general comment about this sort of discussion. A creative medical oncologist can quite often help the patient to deal with adverse reactions by either slowly and steadily escalating the dose rather than hitting you with the standard dose upfront or as alternatively or as well to reduce the maximum dose on the basis that some patients are sensitive to it and their excess reaction that it may indicate the therapeutic benefits perhaps at a lower dose as well. It might be worth having that discussion with your medical oncologist to see if you can get the benefits without having to go through the pain you sometimes have with the side effects.

Person #8:  Has anyone considered Zytiga before Taxotere? I do know it that case you have to pay for it. Has anyone gone down that route or is there any subsidies available for that?

Person #11:  I am on that regime. I am not paying for it. It has had a profoundly beneficial impact on me. PSA has dropped down below one now. Maybe it is starting to plateau. No side effects whatever.

Person #27:  My oncologist indicated I couldn't have the Zytiga ahead of the chemotherapy. I had to the chemotherapy to have access to the Zytiga.

Chairman Bruce  If you want Zytiga for free that is how it works.

Person #27:  We got that on the free list in August. I think at that stage we negotiated a price for every second treatment and got it down to $5000.00. When the oncologist said no you have to do the chemo by the time I got half way through it was on the free list. Unfortunately I didn't like the side effects.

Person #11:  It may be worth going back to this possibility of a lower dose or a slow escalating dose?

Person #27:  That is what I suggested the other day. He wanted to get me started at 750 and I said no we won't we will start at 250. I asked him not to start it for another three months.

Person #11:  That is your call. I think there is a bit of potential to be gained escalating the dose gradually. Taxotere has been trialled looking at that. I think there is a general principle there for people who are sensitive.

We were talking about Nilutamide and problems with that. Another option in the back of my mind, if you are getting a rapidly escalating PSA going up to 40 or something like that it might be worth looking at Degarelix (Ed: Firmagon). It is the same species broadly as Lucrin or Zoladex. It does work in a slightly different way which among other things it has the benefit of the very rapid reduction in PSA particularly useful if there are bone metastases that are giving you a bit of pain. It is an alternative which is being increasingly represented by Dr ‘Snuffy’ Myers and others.

Person #23:  That was early in my ADT treatment. I had that before I had the radiation. Fortunately at the moment I am not showing any metastases except for some lymph nodes that were suspect at the start. During the radiation they blasted those as well. At the moment my PSA never was high anyway. It was like Dr Kwang was saying. I was only 4.4 when I got diagnosed with a Gleason 9. 

My PSA is down now and it has remained down since I had the radiation treatment 12 months ago. It actually allowed me to come off the ADT. I only stopped I was due for my Eligard injection a month ago so I am off it at the moment. There are different theories about whether if that is a good move or not. I don't know if it is a good move or not I will have to see how it goes.

Nilutamide (Anandron), my belief was that my doctor told me, and I hope I am right in saying this, if it attacks the testosterone that your adrenaline gland produces rather than your testes. The Eligard injections target most of the testosterone produced in your testicles. Your adrenal glands produce a bit as well. That was my understanding of it I could be wrong.  

Person #8:  I would have thought by putting the Anandron would give no energy but I have got more energy than I have had before. I am fairly active maybe I didn't get the side effects. My testosterone is zero every time they measure it they can't find it, there is nothing there.

Person #11:  I had a response to Nilutamide replacing Cosudex which is also an anti androgen with Nilutamide at the same time as Zytiga and it has been very pronounced effective increasing the PSA substantially. I went off the Nilutamide and they basically said the so called anti androgen withdrawals where the anti-androgen, depending on what kind it is, promotes the PSA. (Inaudible) I instantly got a rapid reduction in PSA. There are all kinds of permutations and combinations. I think that is more likely to be the case if you have been on an anti-androgen for a fair while.

Person #8:  I read that and that is why I have concerns. I have only been on the Anandron for four months. I will be interested in the next PSA and see how that goes whether it keeps going or reverses itself.

Chairman Bruce   An answer to what we've said about the ADT, radiotherapy and then continuing on these ADT for a while as a scientific basis as radiation oncologist, that I was, and being old fashioned like I am, as ADT has never been shown to cure prostate cancer I know the reason for ADT before radiotherapy or Gleason 9 pathology is to reduce the number of cancer cells in the prostate so the radiation effect is better.

It shrinks the prostate down a bit before treatment starts to get a better radiotherapy response. Once the radiotherapy response is finished I cannot see the point of ADT. It is not doing to anything in my way of thinking except postpone the time when you find out the PSA is going to rise again. I don't take up the argument with my modern colleagues because I am not too sure how they are trained.

Person #11:  I think you have to be conscious of metastasis after you have had primary treatment of the prostate itself. If you have got any PSA recurrence, and rising serially, it is almost certain you have got metastatic disease. The only way of doing that is extended treatment. The standard treatment was Zoladex, and probably still is, ADT it may be used to treat the prostate improve the radiotherapy. I think there would still be a strong argument that if you have got PSA occurrence to continue on with it.

Chairman Bruce  Yes, if you have got PSA in occurrence. If you have had your treatment then you need to sit back and watch what happens, even if you get a little bit of PSA. I have got a prostate which I radiated and I am entitled to have PSA because I can produce a little bit of the stuff that comes out of the prostate. If my prostate was cut out that would be a different matter.

Person #11:  I had a radical prostatectomy and I got no reduction in PSA, even though I had negative margins, so you do not always get it fixed with primary treatment.

Person #16:  I am fairly new to the whole process. I had a radical prostatectomy and I have just completed my radiation therapy and I am on Zoladex. My PSA is currently sitting at 0.04. 

What I need to find out, we mentioned creative medical oncologist. My urologist said he has done his bit and he has finished with me. 

The radiation oncologist virtually said he has done his bit with me. 

Now I suppose the next thing I need to do is find myself a good creative medical oncologist. I am in Brisbane can anybody give me an advice on that?

Chairman Bruce   When you say you have had a radical prostatectomy, you had radiotherapy because you had a PSA after the radical prostatectomy or part of the original deal you were going to have both?

Person #16:  After the radical prostatectomy my PSA dropped to 0.54 and then it started to rise again up to 0.7. The urologist referred me to a radiation oncologist. So they give me radiation therapy and also put me onto Zoladex. 

My PSA is currently sitting at 0.04. Now that the radiation oncologist is virtually finished with me I need to find myself a medical oncologist to take over.

Chairman Bruce  What makes somebody think you have advanced prostate cancer?

Person #16:  It had spread beyond the outer limits of the prostate and they said it was highly likely that micro cells had spread to the rest of the body.

Chairman Bruce  They have only said this, not by proving it with scanning?

Person #16:  No. 

Chairman Bruce  As far as a medical oncologist I am just trying to think of the guy I go to at the Wesley, I can't say who is the best but I think he is very good, Dr David Grimes.

Person #8:  I go to him as well. To me he is excellent. The only problem is you have to wait two hours to see him. It is worthwhile I can tell you he has kept me alive. I think the skill is, the guy matching the right drugs to you, and I think that is the secret to it. He picked out Anandron, he could have picked something else and I don't know why he did that but he did and it worked. I would certainly recommend David Grimes.   

Person #16:  I am finding out now they jumped straight in to do the surgery on me when there no mention of any treatment prior to the surgery to try and shrink the prostate cancer. I think you have to get it right from day one otherwise there are lots of things you could miss out on that might have been helpful.

Chairman Bruce  You go with the best bet, with suggestions by your medical advisors, that is the best you can do.

Person #16:  The doctor said we would finish the radiation. I am on Zoladex but he won't give me anymore. Once the three months of the Zoladex has run out then I will starting taking additional PSA tests to get a clearer picture. 

He said the Zoladex will probably mask a true reading.

Person #11:  I am not too sure about that. I would have thought once you had started the Zoladex that you get PSA results every month. You can get that from your GP. That way you can track the trend if there is a trend that is consistent that is important information for the medical oncologist to have. In terms of when to initiate scans to try and find the source and endeavour at some point potentially supplement the Zoladex with an anti-androgen. It is all driven by PSA once you have got a recurrence. 

Person #16:  I really need to have a negative PSA to establish a benchmark even though I am on the Zoladex?

Person #11:  It doesn't have to be a benchmark it is also looking for a trend. If you can get a monthly PSA from your GP I would be tracking that. The doctor will give you a PSA order and specify ultra-sensitive or both? If you are in the very low level which is less than 0.05, let’s say, then I would be asking for an ultra-sensitive test. If you are above that there is not particular advantage.

Person #10:  Get a referral to see medical oncologist, Dr Elizabeth McCaffrey at the PA Hospital, specialising in prostate cancer. 

Person #26:  Chairman Bruce I would like to make a couple of announcements before time is up.

We have been asking men on Jim's website forums if they would write a letter supporting the listing of Alpharadin Radium 223 and Zytiga to enable to help get it onto the PBS at the cheaper rate. So if anyone on the listing hasn't written a letter to the politicians, to the board and whoever else you can think of now is the time to do because we only have a limited amount of time.

The other thing is if men could update your stories on the website. That would be appreciated. Some men haven't updated their stories for a while and if you have got any change in what's going on I think other men appreciate reading how you are travelling.

Person #21  asked me about iPhones for trial PSA and applications but I don't know anything about that. I am technologically bankrupt. So if anyone knows about that I am happy for them to speak on that.

Person #11:  It may be worth asking that question on the forum.

Chairman Bruce  A neurologist has got some apps up which are supposed to be free.

Person #23:  I am looking at the email that came to me from Person #21 about New Zealand neurologists’ application for prostate cancer and there are links there to go to it.

Person #26:  I might have to chase that up. 

Meeting Closed.

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


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Thank you Nev for the effort to transcribe all this. Dr Kwang Chin's comments were especially informative, and pertinent in my case. Keep up the good work. I am sure it is appreciated by those of us who cannot access these teleconferences.

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