Jump to content

Men with advanced prostate cancer discuss Zometa, oligometastatic, metastases & PSA etc Sept 2013


Recommended Posts

Advanced Prostate Cancer monthly phone-in meeting Minutes 27 September 2013 - minutes prepared by Secretary Nev Black.

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


Person #32:  One thing might be useful to somebody to know about if I mention it here. Zytiga/Abiraterone has two unusual features when you start out. One is that the PSA response is not necessarily immediate. So if your doctor looks at the first couple of months and it hasn’t come down your doctor is not going to panic at that stage. Secondly on your bone scans when you start off on Abiraterone instead of seeing shrinkage as you do with other treatments in the first month or two apparently it lights up very brightly. Again your doctor knowing that won’t be scared about that. So Person #27:  PSA remaining steady isn’t a bad thing.

Secretary  Minutes for last month will be posted as soon as possible. I apologise for that.  Of late I have been leading a hectic lifestyle.

Chairman:  We haven’t got a guest speaker today.  I spoke to  Person #42  yesterday and he had his first Zometa infusion on Tuesday and he was in a bit of pain yesterday so  Person #42  I might get you to speak first in case you have to go if you don’t mind.

Person #42:  My oncologist has wanted me have this Zometa treatment for some time because of osteoporosis. I have refused until now. Seeing the cancer has spread into my bones the oncologist said it may assist in slowing the process of the cancer down and may also help slow the PSA. I am against the hormone treatment because I have terrible side effects. I agreed to have the Zometa treatment on Tuesday. Wednesday afternoon and yesterday afternoon I thought I was going to die I felt like I had been hit by a bus. The pain was in every possible bone in my body apart from my ankles. I was very nauseated and I was pretty sick. I feel a bit better this morning. I rang and spoke to the nurse and she said that can be the case. Some people are affected more than others. She said next time I should be fine. I said if there is a next time like that I won’t be having anymore.

Person #28:  How long did they take over the infusion?   

Person #42:  About 20 minutes. They put in 100mls of sodium and that took 15 – 20 minutes. Then they put in another 100mls of sodium afterwards to flush it through.

Person #28:  You may want to talk to the nurse next time about slowing down the rate just taking a bit longer. They could double that time and it might make it easier for you. 

Person #42: Thanks for the tip and I’ll suggest that to them.

Person #40: What is the frequency of the Zometa? I know the other day was your first one but is it going to be every four weeks, every six weeks or every eight weeks?

Person #42:  Every four weeks and he said it is going to go on forever. That worries me a little bit though. I thought I would just like to wait and see what happens before I make such a decision about that. I am still concerned about what the potential side effects were. I had to go for a blood test beforehand which concerned me. I asked the doctor about that and he said it can have an effect on the kidney. We do a blood test before every Zometa treatment.

Person #40: It certainly is a side effect. Touch wood I have not had any side effects with Zometa. Initially I started every four weeks and when I changed hospitals the oncologist put it out to every six weeks. You are correct I have also been told I will be on it until the end.

Person #42:  Why is that?

Person #40: It forms a matrix over your long bones. One of the side effects of the hormone therapy especially when you have metastasised to your bones is the bones become weaker and more brittle. It will reduce the chances of a severe fracture. The other advantage for taking it is the worst side effect for hormone therapy when you’ve got the metastases in the bone is spinal compression. If you get spinal compression then you spend the rest of your life in a wheelchair. I think I would certainly try and persevere and hope the side effects reduce. I am sure they will do. As the previous speaker said, ask the nurses to slow down the actual infusion period to say half an hour to 40 minutes that may well help as well.  

Person #42:  Thanks. That’s a lot more evidence that I know about it now than I have heard before.

Person #28:  I would just add one more point that you may want to explore with the doctor is that the frequency of the administration relates to the dosage - if you have it more closely at intervals then you have correspondingly smaller dosage. The optimum for you might be a matter of balancing the discomfort against the inconvenience of having to go in more often. This is something you should talk to your doctor about. I have heard/read a number of reports of where even weekly with quite small doses can be much more easily tolerated than four weekly.

Person #40:  One other thing I have read about but I can’t remember the name of it. I believe there is an oral tablet that has the same results. It is obviously not Zometa but it is for the same purpose.

Person #42:  I have been taking for some time now probably two to three years a powder named Protos [ed: strontium ranelate 2g, script required, Treatment of postmenopausal osteoporosis]. I have been Protos two hours before the evening meal and two hours after and it did help the density the bones. I am happy with the progression of that. That is the main reason why the oncologist has given Zometa to me because he thinks it might slow the progression of the cancer of the bones.

Person #28:  There is another more recent version of the Bisphosphonate category of Zometa is a second generation Bisphosphonate and I am referring to Denosumab [ED: Denosumab / Prolia and Xgeva] Different people can respond differently to these medications. It is another one you could raise with the doctor. There are a few others that are first generation Bisphosphonates . There are about three. One of them is Aredia [ed:pamidronate]. There are a couple of others. I believe they are not as effective as Zometa. If you get forced into a position of having to compromise or possibly graduate yourself to a more effective third generation Bisphosphonate, that is another possible avenue. You could take it in stages.

Person #42:  Thank you for that. I will take up your suggestion and ask my doctor to slow down the time and see how I go next time. My next appointment for Zometa infusion is on October 30.

Chairman:   Person #40:  how long does it take for your infusion when you have the Zometa?

Person #40:  About twenty minutes. They put in a bit of saline solution. Twenty minutes and then a bit more saline, that’s it. The nurses are on the ball and you are in and out in half an hour. If they are busy it takes longer.

Chairman:  Thank you very much for that and all the best with your Zometa infusions in the future.

Person #42:  Thank you Chairman: for the opportunity to discuss with fellow members. I feel a little bit happier about it now I guess.

Chairman:  It would be a big disappointment if you can't go on with that treatment.

Person #42:  Particularly if it helps the hormone treatment. As you know I have had a bad time with. I am gradually getting tired and more exhausted. I have gotten older very quickly over the last couple of years. Before I had the cancer, although I am 77 now, I was very fit and I could run around doing all sorts of things. Now I am feeling my age and older and I feel it must be the treatment for this cancer.

Person #28:  Are you still on hormone treatment?

Person #42:  No because of the effect I have I am currently on intermittent hormone treatment and at the moment I am off. The last PSA was 8.26 so I have been taken off it because at this stage I am responding very well to the hormone treatment. Previously I was on Cosudex I was so ill and disorientated and confused I couldn't even drive a car. So I have come off that. I am just having Zoladex now. The 3.6mg implant once a month and I only had it for three months and my PSA has dropped from 30 down to 8.26. The doctor is going to watch this in relationship to the Zometa. Next time he will give me a pathology request for PSA he will let me know in a couple of months how that is going.

Person #28:  Your oncologist sounds like he is exactly on the right track. Being on 3 monthly Zoladex and off the Cosudex you will probably find that more comfortable.

Person #42:  I am pleased you said that because I don't have a very good relationship with him. He doesn't have a very good bedside manner. I consider him to be a pretty good doctor so I I think I will hang in there with him.

Person #18:  A follow up in regard to last month's guest speaker Dr Farshad Foroudi involved in the ‘POPSTAR’ trial at the Peter MacCallum Centre in Melbourne. I was just wondering whether there is anything similar to that going on more local? Either Brisbane or Sydney? Does anyone have any information on that?

Chairman:  When Dr James Mackean was with us he said there was a Dr Matthew Foote in Brisbane that did one spot. He is the only one I can recall anyone talking about in Brisbane. One of our members in Melbourne he may be able to give you a bit more of an update Dr Foroudi and there is another place down there I think that does up to five. Is that correct  Person #2

Person #2:   The trial for up to five at Epworth Hospital has not got under way yet. Were you eligible for the ‘POPSTAR’ trial?

Person #48:  Dr Foroudi got me to do new scans in Toowoomba, where I had them originally, for a start to see what they showed.

It will be April two years since I had metastases in the left pelvis and one in the right pelvis in a lymph node. Since then I have been on two and a half years of continuous hormone therapy.  

The metastases didn't show up on the latest scans. When I sent Dr Foroudi the results he said we will just have to leave it for now as there is nothing we can do about it at the moment. So that is where that is at. They would have done a more in depth scan in Melbourne if my Toowoomba scan had shown anything there is no question about that.

Person #28:  I think there will be a lot more use of stereotactic surgery. It is still early days in Australia but it has been happening in the States for a while. It is just a matter if you do happen to have a flare up by then there will be more people offering it and be more established. I think you are in a good place.

Person #48:  The only thing I am concerned about is, others say it is only minor, but my Testosterone levels have started to rise gradually.  While it is only up to 0.8, for me, that is definitely going up. It was less than 0.5 at one stage.

Person #28:  There is a limit to what they can actually measure. The standard method of Testosterone was only capable of getting down to about 0.4 below that it gets a bit academic. There are more precise methods of doing it which I am about to explore. You may want to ask your doctor what he knows about alternative pathology. Dr Stephen Strum said 0.7 was about the target level. That is a lot less than what other people would regard as the target. So 0.8 is not necessarily a cause for alarm. It depends on whether it continues or not and if it does you may have to call in another alternative hormone suppression agent I would think.

Person #48:  I couldn’t agree more.  When you put all the tests I have had onto a chart the trends from the last three tests is definitely up from a nadir of less than 0.5. The blood tests I had this morning when I get the results next week will either confirm it going up or not. While I realise everyone considers 0.7 or 0.8 in the low stages the trend is what I am looking at rather than an actual number.      

Person #18:  You contacted Dr Foroudi to see if the trial would be a possibility for you. Can you inform us as to what process you went through and what scans were required?

Chairman:  I can send you an email later so you have his contact details. I decided to hold off contacting Dr Foroudi until after he spoke and that same day I sent him an email. He responded within minutes. I sent the results from tests I had had two years ago, bone scan and CT Abdomen and Pelvis. He just said get another scan straight away and then send him the results, which I did and was more than happy to do.

Person #18:  I think it would be worth talking to him either by email or going down to see him to see if it is a possibility for me. [ED: the convenor or secretary is happy to supply Dr Foroudi’s email address to members on request]

Chairman:  Dr Foroudi, he is a maximum of three metastases and Epworth Hospital, Melbourne talking about five metastases.

Person #40:  With your possible rise with your testosterone presumably you are going to the same pathology lab?

Person #48:  I have all my tests done at Sullivan and Nicolaides. I want to see PSA levels less than 0.01. That is just a mental thing for me. There is no rise in my PSA just the testosterone.

Person #40: It may be just a glitch in the system. I had a red blood cell count that was way out recently and then in three weeks’ time I had another blood test and it was normal. It was normal before and perhaps they screwed up in the testing.

Person #28:  I have my second appointment with Dr Foroudi in the next ten days so I will be able to report back at our next meeting. I am chasing down a string of lymph nodes on the left hand side which has been responding well to Zytiga and hormone therapy. I just want to get an updated PET scan. They did a sodium fluoride PET scan and found no bone metastases which I was happy about. They need to do a follow up PET/CT Scan and I will have that in November.

Person #42:  I can get my GP to request a testosterone blood test can’t I. 

Chairman:  Yes.

Person #42:  I had a bone scan and it showed metastases not only in my sacrum but also in most of my ribs. So before I started Zometa I requested another bone scan and there are no metastases evident in the ribs. Suggesting it is worse in the sacrum and not in the ribs. Their report suggests I may have had trauma to the ribs at the previous bone scan. How reliable is the bone scan?

Person #28:  Traditional bone scan will only detect bone metastases when the PSA is at around 20 [ed: search: PMCID: PMC3665151] and probably the same with the CT scans. They are not sensitive to very small metastases. You may want to look at getting the sodium fluoride PET/CT scan as it is much more sensitive to picking up the bone metastases and if you would like to track the direction the metastases are going in response to the hormone therapy then that may be an alternative you could explore.

Person #2:  I have been through the preliminary scans with Dr Foroudi. Yesterday I had my first stereotactic radiation treatment. Really the only side effect that I have had is a bit of fatigue. I have two sessions left, one on my pubic bone and one on a lymph node. One session for each of the metastases. With the scanning, as well as MRI, sodium fluoride PET/CT scan and then a scan to look more specifically at the lymph nodes to see what is happening with them. I have had fairly detailed scans before I started. 

They put me on a bean bag which they sucked all the air out of to mould in to my body shape. Then on the table they wrapped me in plastic which they also suck the air out of to stop movement. With a pen they marked and got me all lined up. Then they went away to plan how they were going to do the treatment. That was to be the mock up version but then I was offered the treatment so I had 30 minutes of radiation.

Chairman:  We will await your results with great interest and wish you well.     

Person #40:  I would like to know if anyone has had any dealings with the PA Hospital Brisbane Multidisciplinary Team which specialises in advanced metastatic prostate cancer as a patient?  I am enquiring as to whether anyone in the group has been referred to them, been treated by them or had their case reviewed by them?

Person #45:   I am with the PA Hospital and their team looks after me. I just recently had a bone scan and they asked me to come in for a CT scan and I get the results Monday.

Person #40:   Were you referred directly to the PA by another oncologist? I am up in Toowoomba and I asked my oncologist to have my case reviewed there and he said there was nothing they could do as I was past care. I said with all due respect they just specialise in treatment of advanced prostate cancer where you are a generalist. Were you transferred or did you go there straight away? 

Person #45:  Initially when I was diagnosed with prostate cancer Dr John Preston at Greenslopes he was the surgeon. The cancer is in my bones so I could not have surgery it would not have done any good. Somehow I did get to the PA Hospital. I don’t know whether I was referred there. I went there initially to check out if I could handle my situation and then it went from there.

Person #32:  Oligometastatic treatment is the treatment of fewer metastases. If you are in Brisbane and looking for someone to do that beside Dr Matthew Foote, another man I spoke to went to Dr Paul Eliadis, who, while stressing the investigative nature of this treatment, referred the man to a radiation oncologist for it. This treatment is available in Brisbane and we can help you get in contact with Dr Paul Eliadis. 

On the Bisphosphonates, Zometa and Denosumab [ed: Denosumab eg Prolia and Xgeva] are in a league by themselves. They are very good for the purpose of protecting against metastatic damage that may damage your spine or other bones. The other Bisphosphonates that have been mentioned the tablets and the powders they will strengthen your bones generally and be effective in keeping your bones strong if you are on hormone treatment. They are two different kettles of fish.

Chairman: I neglected to call  Person #13  apology earlier. He made a posting on the website recently, Prostvac ‘trial too risky for me’.  A couple of years ago there was an article in the prostate cancer newsletter in Queensland, August 2011. It talked about Prostvac and how it was going to be years away before it would be available as a trial. It is now available as a trial. Does anyone have anything to add to that or have any knowledge of this trial? It is available in Brisbane for guys with metastatic cancer. It is a vaccine. Person #13  his PSA was 90 and he said it was far too risky for him. He did not want a placebo because of where he was at. A number of men are on a placebo and he was not going to run the risk so he has gone straight to chemotherapy. He has had one infusion of chemotherapy and has another infusion this coming week. Just wondering if anyone may have anything to add about Prostvac?

Person #28:  Prostvac is a vaccine approach which has been in the trial setting for some time. It shows some promise. I don’t think it is quite up there with Provenge, the blood transfusion system, they have in the United States. It is still in the phase three trials in various places around the world. It is still on the table beyond that I can’t add any specific Australian trials. You would have to Google it.

Person #32:  I looked at Google and found no reference to it for availability in Brisbane. The trial I looked at it tells you have got to have the vaccination to smallpox and without it you can’t do the trial. Chemotherapy rules you out and not have the smallpox vaccination rules you out also.

Person #42:  The oncologist told me the other day Zometa is really soft chemotherapy. Would you guys agree with that?

Person #32:  Yes, Zometa possibly does have some anti-cancer effect. [ed: Keeping you from spinal or other bone breakages may also possibly you alive longer, certainly with higher quality of life.]

Person #28:  Epworth stereotactic radiation oncologist is Dr Patrick Bowden.

Person #40:  You mentioned the smallpox vaccination. How long does a smallpox vaccination last for, do you have any idea?

Person #32:  It lasts you for life. As smallpox was abolished by the vaccinations, the vaccine is no longer available.

Person #28:  Have you heard anything about pre chemotherapy Zytiga?  Whether there is any approach being made by the Pharmaceutical Benefits Advisory Committee [PBAC] about registering it for that purpose and secondly have you heard anything in a similar way about Enzalutamide (Xtandi), its standing? If not is there something we should be doing to stir the pot?

Person #28:  PCFA to follow on with from what we did earlier on the post chemotherapy use of Zytiga. Has the manufacturer lodged any request on the PBAC for that treatment they use? I am wondering now if it would be a good time to point out the fact that it has been approved in the United States and Europe for pre-chemotherapy use for some time now. It is obviously very effective and should be very cost effective from the government’s point of view. I am just wondering if we should be getting out there and making a noise about it.

Person #32:  Although it is extremely expensive. Under the guidelines of how many healthy years of life something gives you for your dollar it should be very good. I agree that is something we should start.

Person #28:  Similarly with Xtandi, same argument really. We don’t have approval for post chemotherapy with Xtandi at this point. The trial that should be ready by now MSKCC [ed: Memorial Sloan Kettering Cancer Centre] in the States but they are looking at the two uses in conjunction, Zytiga and Xtandi. That seems to me to be the state of the art in advanced prostate cancer.

Chairman:  Alpharadin [ed: Xofigo or Radium 223] has been approved in America as well.    

Person #32:  There has been an approach made by Bayer for approval of Alpharadin in Australia.

Person #28:  That earlier discussion we had about Zometa and Denosumab, Alpharadin fits directly into that same metastases scene. Anyone able to get onto a trial with Alpharadin advanced bone metastases would be well advised to do it I think. Whatever we can do to push the argument to getting it approved here can only help.

Person #2:   As well as all my other clinical trials, I have been on a trial run out of Queensland with the QLD Cancer Council and Griffith University on mindfulness and well being for cancer patients. Basically meditation but I found that quite useful.

Chairman:   We had a guest speaker on the teleconference late last year on this subject from the Queensland Cancer Council. [ed: Teleconference 21 December 2012, from the cancer council Rob McDowall was the guest speaker. 

Rob can be reached on: (07) 3634 5314

Tarlee’s number is (07) 3634 5324 

Looking for participants for ‘Living well with Prostate Cancer’. This project built around the mindfulness meditation?]


Person #28:  I have also participated in that trial but unfortunately I got onto the placebo side. I take it you got onto the active side?

PauI Hobson:  I got onto the active side, yes.

Chairman:  When you are on a control, do they just leave you there or when they see there is nothing happening you don’t get the real thing eventually?

Person #28:  Well the control in this case was providing educational material. Of minor value I guess. They do ask a lot of questions on questionnaires. There have been I think three of those during the period of the time. The range of answers that you give represents the control data in a sense if you add everyone on that side of the trial together so they have got some basis for determining whether there are positive results from the active side.  

Person #2:   I think the main difference was that with the control group got all the materials which included CD’s of meditation. The active group as well as given those materials and the CD’s we have also had eight weekly sessions with a psychologist leading the meditations. The control group had meditation material but not someone telling them how to do it. The active group we had a weekly teleconference/meditation by the telephone.

Person #28:  I have not received meditation CD’s.

Person #2:  The Cancer Council does have those meditation CD’s available and they will send them out to you.  

Person #32:  To answer your question generally it depends on the trials design. Some trials, when it is clear you are failing will switch you over to the real treatment. Other trials will not. When they are designing the trial this is a big factor for them to take into account. If they are going to let men who fail the first treatment change over as soon as they fail the difference between the two treatments clearly, you have got to run the trial usually longer and there’s a lot more people. Mostly they don’t want to do that so that they can get a result quickly and start selling their drugs quickly but if the drugs are already selling or they need to adapt people to it they might say yes we will let you switch over. Sometimes yes sometimes no, it is in the fine print.    

Person #45:  Wasn’t there another vaccine other than Prostvac. I seem to recall checking it out on the internet.

Person #32:  There is some early research I think at the Mater aimed towards a vaccine, but no results yet.

Person #28:  I just one other I remembered on the list of items for dealing with bone metastases and that is a product called Sprycel [ed: dasatinib tablet]. There are trials going on with that also along with the other trials mentioned. Although the Alpharadin trial is pretty much concluded now, successfully, but Sprycel is another candidate. Seems to be beneficial and another one to add to the list of possibilities. [ed: Snuffy Myers: "Let me emphasize first of all that Sprycel is an iffy drug for prostate cancer that I would use in certain special circum- stances, so it's not something that I'd recommend for everyone, only after a special evaluation."]

Chairman: There certainly is potential to have a lot more different treatments now than what there was ten to fifteen years ago.

Members agree but we need a cure.

Person #28:  I think with metastatic cancer if you can keep on buying time there will be a continuous flow of things that will buy you more time and by the end of it you will die of something else. We have a disease that needs to be managed. One thing we could talk about at a future meeting perhaps is exactly what we know scientifically about diet, supplements and exercise. There are a range of views on which supplements are good and which are not. There is always a heap of advice around so maybe this a topic for discussion.

Members agree.     

Jim Marshall:  There will be an email coming out shortly asking for what topics you would like to see discussed. What would be the most valuable to others and themselves? There are many tasks that make the group and the website work better that I do not have enough time for. There are many tasks that can be handed out to people who wanted to some work. One of the tasks is to go through Dr [snuffy] Myer’s videos and do a synoptic. There are a number of those over the years and he recently did a video on Sprycel. So if there are men willing or anyone can volunteer that is one of the jobs. One of the general tasks would be to go through which articles that are still very current.

Many of these things are made available in the United States beginning in 2006 and one of the groups divided their survival data up and the guys who were diagnosed after 2006 lived significantly longer. Lots of research for the near future.

Jim Marshall:  We are thinking about creating a ‘drop in any time page’ where men could volunteer if someone is in their area to call and see them or have a cup of coffee. This will go up shortly.

Person #10:  I did get to talk to my specialist up in Cairns a week ago and he advised me that when Gleason score went from a 9 to a 10 that the window of opportunity to possibly cure the cancer had gone. They said they would still try it and brought the radiation forward a month to November. The good news is my PSA is down to 0.33 which meant the Zoladex is now controlling the cancer and they can help me through the next few years. He didn’t seem to think the radiation would cure my cancer. I had to understand that the Zoladex could keep me going for quite a few years. Some good news there.

Person #28:  There is an arbitrary cut off where they talk about curable and incurable. It really should termed as low risk, intimidate risk and high risk it would be a better way to discuss it. None of these cuts offs by any means sharp or applicable for every individual. They do use PSA in one of those and I think far more important is the response of the PSA to the treatment. If you can drive the PSA down to less than 0.5 by using hormone deprivation then it is certainly premature to say that it is incurable. 

If you can’t get the minimum PSA down to those sorts of levels then the chances are that it is a management process rather than a curing process. These are not sharp delineations these numbers. Much more important to look at how low you can drive it then if it then starts to rise again the rate at which that rises occurring. If it is occurring rapidly it is more serious than if it is occurring very slowly. Beware of that and talk to your doctor.

Person #45:   Does anyone on the line know anything about the Ketogenic diet? I know it is an alternative diet and I have discussed it with a nutritionist at the PA Hospital. I know it is not a cure. I believe they do use it in young kids for epilepsy. It is related to a low carb diet. 

Person #28:  Dr ‘Snuffy’ Myers promotes the Mediterranean diet.

Person #32:  The Mediterranean diet is the most likely to help you.

Chairman:  The next face to face meeting at Greenbank RSL will be on the 9 November 2013 at 11.30 am.

Person #42:   For the train buffs. The ‘Sunlander’ service, Brisbane to Cairns, finishes early next year. 

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

Reminder: Face to Face Luncheon Greenbank RSL Saturday Nov 9 2013 at 11.30 am.

Link to comment
Share on other sites

  • Admin locked this topic


This topic is now archived and is closed to further replies.

This topic is now closed to further replies.
  • Create New...