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Men with advanced prostate cancer discuss their treatment with Taxotere, Zytiga, Cabazitaxel, Xgeva


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Minutes courtesy of Secretary Nev Black:


Advanced Prostate Cancer Telephone Meeting Minutes 25 October 2013

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


Jim Marshall  Apologies for not staying for the teleconference. I am leaving to visit my wife in hospital after her recent operation.


Person #43: We all wish Wendy Marshall all the best.


Chairman Tony  We don’t have a guest speaker today so we have an open arrangement for most of the meeting. Are there any people that would particularly want to talk about their own situation if you can nominate that now we can make sure we get to you during the meeting. Chairman Tony makes a note of members who would like to take a turn at speaking today.

Person #23:  Jim Marshall has been fairly single handling the group and has done a fantastic job [jm:Greatly assisted by Secretary Nev Black, and before that Secretary Euan Perry]. The workload is starting however to become a bit much in terms of the number of calls he receives and makes, the number of websites he monitors, comments on and the maintenance on the website itself. So he has asked for a bit of help. A few of us have put our hands up and offered to help where we can. One of the first things that have been discussed is to get a comprehensive feedback from our members on how well they believe the group is serving them in terms of various purposes, particularly the teleconference, website, Facebook, Skype and so on. We thought the best way of doing that is with a survey. We are still in debate as to whether we do it by phone call or post.

Person #43:  I sent a hard copy of what we were looking at to Person #37.

Person #37:  I have not received the survey in the mail as yet.

Person #23:  I suggest we do that for everybody. A hard copy and with a stamped addressed envelope for return would be the better way to go rather than email. Hopefully it would generate a high level of return. Then with a follow up phone call. There are about 105 members are on our list.

Chairman Tony: Just amplifying on that a little bit we do know there are about 25,000 men with advanced prostate cancer in Australia at any one time. We can’t accommodate this amount of people with this format in one session. We still have a lot of people out there who are not able to, or aware of, the sort of services we offer. If we are going to expand with more members Jim is not able to build it up all by himself. We want to keep it as informal as possible but we are going to have to develop some sort of structure so we can spread the word around and minimise the confusion as we help with that. So that is a general break down of it all. 

Hopefully we will be getting the information out to you all. We can start by saying what to do think of the current services, what might be used and what is. Always look at things and try and build a bit of a structure.

Person #12:  I would like to make a comment regarding the survey. Is it worthwhile approaching the PCFA they have a bit of money and they may be able to offer some assistance regarding the survey?

Person #23:  Great idea because we don’t even have a bank account and I suspect that would be a good move.

Person #43:  There are about four pages involved in this survey and as it stands at the moment about 47 questions to be answered.

Person #23:  The questions are all answered with a number between 1 and 3. So you don’t have to go on a discourse but there are provisions to do so if there is a particular point you want to make. Hopefully it will be a pretty easy questionnaire to fill in.

Person #37:   Who pays for all the costs of the postage etc.? Will the PCFA post out the survey and how many will receive it? 

Person #23:  We will approach the PCFA to underwrite that. It is not such a big job with approximately 105 surveys to post out and it will not be expensive. It is a sample of 105 of the 25,000 and we want to use that as a bit of a guide as to how we evolve in the future.

Chairman Tony:  I would be happy to do that to but I would also be happy to receive it by email. Getting PCFA involved may work famously or it may end up as a six month exercise.

Person #23:  If the PCFA picks up the cost I am happy to address envelopes and send them out. If they can do the duplicating as well that would be an added bonus. We need to work out those details.

Chairman Tony:  Introduces the first speaker.

Person #7:  I used to sit on in these meetings and be very silent because I felt I had nothing to contribute. I was very stable on Zoladex and my PSA was less than 0.83 and it started to become unstuck last November. My PSA started to rise so I went on to Nilutamide and that didn’t do much at all. By May this year it was rising rapidly. My oncologist took me straight off the Nilutamide and was preparing to put me on the Taxotere chemo. At the same time I got a review from the multidisciplinary team at the PA hospital and they opened up the possibility of a Prostvac trial. I spent a fair bit of time qualifying for the trial and by the time I got to the point of commitment to it my PSA had risen from 20 to 75 in a month. 

They decided it was too high of a risk for the Prostvac trial. They canned me on 9 September 2013. Two days later I started on Taxotere (Docetaxel). On Taxotere I have suffered pretty badly from joint pain, from fatigue and by the time the blood reached the lowest at about 11 days, I was in real trouble with belly ache. I never ate for about three days, I only vomited the once but had some diarrhoea.  

The second cycle I tried a few things differently where we introduced a Probiotic, Inner health plus, Activia yoghurt and Panadol Osteo to help with the joint pain. So by the end of this second cycle I really only had the fatigue and very ugly skin blotching but it was a much more comfortable experience.

I am now three days into the third cycle and I think with the management that we tried it seems to be working. I am rather hopeful it will continue to be relatively simple to the end of my life. I have lost about 30% of my hair which has left it rather patchy.  

Chairman Tony Do they do PSA checks during the therapy?

Person #7:   I find that difficult to get because when you go in and present for your chemo they do an immediate blood test and it comes up with all your blood. They take a PSA sample for your PSA measurement but you don't get that back. I have asked them for it but they say it is on the doctors file. The last twice I haven't got to see the doctor to see the file. So I haven't had any upgrades. So to cover that I see my GP once a month for an Xgeva (Denosumab) injection and I organise to have a blood test available at that time. 

When I started the chemo my PSA had risen to about 100 and by the end of September towards the end of the first cycle the PSA had risen to 142. Which the oncologist told me was a pretty good result. He would have expected it to have risen to as high as 180. I see my GP next week and I will be very curious to know if there has been any movement during the second cycle. They have told me that you don't normally expect to see a large PSA movement until after the third cycle is complete. So that is where I am at.

Person #23:   I think it is quite disturbing that you don't have made available to you on a routine basis all of your test results. Particularly the PSA at the moment as it is a key indicator. Somewhere the system is failing you although it seems that in other respects it is looking after you pretty well. You should get a written copy at the same time as the doctor does. I think that is something you should be pursuing.

Person #7:   It certainly is. This will be something I will pursue.

Person #40:  With the PSA testing, I do my blood test at the PA hospital. Apparently with the PSA it takes six hours to get the results.

Person #7:  I assumed that would be the case but I never had absolute conformation, so that is interesting.

Person #40:  Sometimes it is a good idea if you can do it get your blood test done the day before or if you are seeing a doctor of a Monday maybe you could get the blood test on the Friday. Sometimes that is not convenient.

Person #7:  When I get the one done from the GP I always give it three days to get the results back.

Person #40:  I think they might do it in batches too, they might have a number and build them up and every six hours they do them. 

Person #23:  The other thing I have heard from ‘Snuffy’ Myers (USA) specialising in prostate cancer is that in the event that you have bad side effects, from the chemo, it is not too uncommon to either significantly slow down the infusion rate and or still persist to actually reduce the dosage. So they may add an extra cycle to compensate for that. That is something, if you do have any reoccurrence of those obviously debilitating side effects, you should discuss with your oncologist.

Person #7:   Absolutely. I imagine that the severity of what I am facing, you look at the list and you keep that in your back pocket.                   

Chairman Tony The Zytiga and Prednisone combination potentially they are available to you after the chemo if and when that becomes necessary.

Person #7:  That is interesting because they sent me home with the prednisone and the anti-nausea drug, Maxolon (Metoclopramide) and I haven't had either of those at any stage. I have been pretty good on balance. 

Person #23:   I thought the prednisone was a necessary adjunct to Taxotere you need to have to avoid changes in your potassium levels and other general effects? The nausea drug is more optional.

Person #7:  May be I need to talk further with that. The last time I spoke to my oncologist about this, I am a type 2 diabetic, and when they give you the Dextramethasone on the day before, the day of and then the day after chemo it causes blood sugars to spike alarmingly. The Prednisone is a steroid too and I discussed that with him and said I had to keep my blood sugars stable and he has given me the ok to stay off the Prednisone steroid in the interest that I can manage my blood sugars.

Person #23:   That does change the situation completely if you are diabetic. Sounds like you are being well advised.

Person #43:  If  Person #2:  is on the line are we able to hear things from the ladies perspective?

Person #2:  Everything seems to be going pretty well. I must admit I expected the chemo to have more side effects. I have been pleasantly surprised that we have managed to get through as well as we have. The lethargy is a problem but it has always been a problem that’s not new. Overall I think  Person #7  has coped really, really well with this.

Person #43:  That is pleasing to hear. This is a question to everyone in general. After being on chemo,  Person #7 has had his third infusion, do you handle it better as time goes by or do you tend to deteriorate with more infusions?

Person #31:  I visit oncology patients, as you know, and my observation is it is that way. Many people do level out in terms of their reactions. The body accommodates, and after a third of the way into the treatment roughly, I find a lot of people start to get onto a plateau of side effects. I think that is a fair assumption to make. My observation is not a medical one.

Person #43:  No that’s fine as you are seeing people all the time. So that is good.  Person #7  and  Person #2  can expect  Person #7  might even improve rather than deteriorate as the chemo treatment goes on.

Chairman Tony Invites   Person #48  to speak.

 Person #48:  Some of you may not know my background. I was diagnosed back in 1996. I have been through all the tablets, did all that first. The Taxotere it is interesting to hear somebody that is new to Taxotere because I have had quite a bit of it. There are side effects to it, there is no doubt about that. As it goes on they do fade. I went through it for some quite some time. It will bring your PSA down there is no doubt about that. 

The next thing was I went onto was a trial of Zytiga and it was extremely expensive but they finally got it on to the PBS. I started on the 11 January 2012 and only came off it this week. Just to give you all an idea of the PSA reading the paperwork what I have is not exactly what I asked for but sometimes you have to take what you can get. I have got one here that say started on the 19 December 2011 when my PSA was 540. Then we would have got down onto the Zytiga which I took orally. I took 4 x 250 mg tablets a day, hour before meals. Side effects were lethargy but I think that goes hand in glove with prostate cancer when it gets to the advanced stage. 

I will just give you some figures. Now at the 4 March 2013 the PSA is 21, which is a hell of a drop, and the 2 April 2013 it was 34, 29 April 2013 it was 48, 27 May 2013 it was 36. So you can see it is up and down a bit there. 24 June 2013 PSA of 65 and then we go to the 22 July 62, 12 August 110. So it has basically done everything it is going to do to keep it down if you can call that down. 19 August PSA 120, 16 September 2013 PSA 220, 4 October 2013 was 270 and the last entry I have is the 21 October 2013 PSA reading of 340. That is the last reading I have. So Zytiga does reduce it at the start. 

I don’t want to frighten anybody with this because we are all individuals and we may relate to it quite differently. It did reduce it at first but then it just started to go up and kept going up. I have been taken off it. The next step now, as we are running out of options, is Cabazitaxel. I had Cabazitaxel before I started the Zytiga. I started that back on the 22 July 2011 and six days later I went to the hospital pretty sick. Wiped out my white cells completely and I was in the ICU for nine days. I came out of it alright. 

Cabazitaxel this time the doctor is going to give me a 60% dosage of what I had the first time because it made me really sick. I could barely walk 12 paces without stopping. This time with 60% of the dosage he said I think you should be able to handle it quite well. I hope he is right. These were the words of the oncologist. I was due to start that on Tuesday this week but they couldn’t get it in time. So it starts again next Tuesday. I am anxious to start it because my PSA keeps going up. Ask me how I feel, I feel fine. My last PSA reading being on Monday of this week was 340. Do I feel sick, no I don’t? 

The ALP [Ed: Alkaline Phosphatase] blood tests which is all connected with the bones, and          because I have got it in the bones, it is jumping up too. So I think if the PSA comes down that might help that because a month ago I was on Zometa and having that monthly. I am off that now and on a needle once a month of Xgeva so I am having that instead of Zometa. Lucrin once every three months and that’s about it, that is where I stand. They are the regular ones at the moment. So I am just hoping I can handle this 60% dosage. I turned 80 in January of this year. I don’t feel sick at all. I live a pretty normal life actually. 

The sad part about it is, I said to a friend the other day, here we are, standing at the bar, and I feel quite well, and I am going in tomorrow to start some medication that may make me quite ill, I don’t know. In the long run I suppose it just might bring the PSA down and at the same time improve the situation with my bones. I have got metastases in the spine, metastases in the bones, and I even have metastases in the skull. The last bone scan I had revealed it was up in my skull too. So I have it pretty well everywhere. I am not here to do any scaremongering I can only tell you my situation. As I sit talking to you this morning I feel quite well and have done for some time. So that is where I am at.

Chairman Tony so Cabazitaxel is your next treatment?                          

 Person #48:  Yes and there are two needles. I don’t know all that much about it yet. I have only had one major infusion of it and they put me in the intensive care for nine days. Six days after I had the infusion I got really crook. The Cabazitaxel infusion I did have back in January 2012 it knocked the PSA right down. 

So here is hoping I can manage this 60% dosage and it will reduce the PSA. Any questions? The Taxotere discussion is interesting because I went as far as I could with that. I cannot have Taxotere anymore because I have neuropathy and that affects your extremities. Feet in particular it is like walking around on half an inch of foam rubber between the foot and surfaces that you’re walking on but you start to get used to it.  The tips of my fingers get a bit tingly sometimes. Not all the time. Taxotere I got through that pretty well actually.

Chairman Tony  really the only one after you have done Cabazitaxel the only other one is, I think is the Xtandi (Enzalutamide) drug. May be you need to be advocating to get that for a start available post chemo on the PBS.

Person #23:  Clem has your oncologist discussed Xgeva with you or Zytiga or did you say you used that?

 Person #48:  Xgeva, yes I am having that instead of Zometa. That is for the bones.

Person #31:  It was going to be a part of my story that I be started on Xgeva. Do any of you guys have any side effects with Xgeva (Denosumab). No one has a problem with that?

 Person #48:   No I don’t.  

Person #12:  Sometimes it causes a bit of fluey feeling straight after the injection.  

Person #31:   That is what that did nurse told me but I didn’t have that problem. Your story  Clem  I finding inspiring overall. Your 17 years down the track aren’t you?

 Person #48:  This is my seventeenth year of survival. I started in 1996. 

Person #31:   That to me is a very inspiring story. You got to 80 that is my goal.

 Person #48:   One of my eldest sisters turns 99 this year; my sisters are all in their 90’s. So whether I can make it to that I don’t know. At the moment the people I mix with, I think I appear pretty much the same as they do. It is interesting to hear the comments about the Xgeva and the flu symptoms afterwards. All I can say is I had a hell of a cold, it was just a cold and it went. It could have been from the Xgeva but I don’t know. Side effects at this stage I am not doing much, not having much. Cabazitaxel it will be interesting in a months’ time when we talk again and how I handled that.  

Person #23:  Your response to Cabazitaxel might show that adaptation that we talked about with Taxotere. As you get exposed to it your body doesn’t get the shock it might have done on the first occasion.

 Person #48:  That may be the case it is only 60% of the dose that I had the first go.

Person #23:  You may find you may be able to accelerate the dose without any side effects as the courses go on.

 Person #48 – That may be the case. Is anybody else on Cabazitaxel? 

Silence. No I didn’t think anybody else was on it.

Person #31: Just as a matter of history what was your Gleason score back in 1996?

 Person #48:  3 + 3.

Person #31:   Was it really, that is probably regarded as a low risk.

 Person #48:  Yeah I think so. That may be what helped me through. People ask how long have I had prostate cancer, and when I say I am in my seventeenth year they say, gee that’s a long time, I would be happier if the response was, is that all, thirty years now that would be something to talk about. 

Chairman Tony  thanks  Clem  and Introduces  Person #31  to speak.

Person #31:   Good morning everybody. It has been a few months since I was on the line. I was first diagnosed in 1999. My Gleason was 7. I had surgery and follow-up radiation. My PSA still continued to rise. I started intermittent hormone treatment in about 2005 or 2006. I have been on that ever since. Eligard has worked very well. I had a period of 18 months off up until May of this year. My PSA had got to 7 and then it wanted to move again. I had a CT scan, a bone scan and a bone density scan in the middle of the year. The CT scan showed a couple of lymph nodes in the pelvic area that were bearing cancer. There was one bone spot around the back of my pelvis and the bone density indicated that I should be in the full on osteoporosis category. 

In June during the teleconference I did mention this little detail that I actually decided there was no point in doing these pelvic nodes because if I did that I might end up with the complication of swelling down the leg. The little bone one on the back of the pelvis he thought it would be worth me talking to a radiologist. I was aware of a study that was being done about men with just a few three to five little spots, going and hitting them hard. The radiologist I went to see is not keen on that strategy. He said I virtually have no cancer visible in my body and to go back on the hormone treatment. 

I remember a couple of you said get a second opinion. So I went to a second oncologist and he concurred with what the other two had said. The only thing he wanted to do was to put me on Xgeva because of the bone density. So with Eligard and since June added Xgeva. Three months after the Eligard started up again the PSA was done to 2.3. Fingers crossed it is going to work for me again. I am feeling quite well. My side effects are that I get a little worn down, that’s about all I could say about my side effects.  

Chairman Tony  Thanks a lot. Invites  Person #23  to talk.

Person #23:  I started in 2002 with a PSA fairly high. Radical Prostatectomy which indicated negative margins, but the PSA however didn’t drop indicating micro metastasis and Gleason was 7. PSA between 4 and 5 remained stable for about a year and then started to go up. In my case it went up to 30. I went on to Zoladex, Cosudex and Avodart a three barrel shotgun at it and that settled it down. Over the years I have had intermittent treatment along those lines. The PSA fluctuated down below 4 and 5. 

The disease became resistant to that and I went on to the pre chemo trial of Zytiga. I tried a couple of things prior to that. One was switching from Zoladex as the primary hormone to an andron Degarelix (Firmagon). It works in a slightly different way but I found that a bit difficult. Another attempt was to switch from Cosudex to Nilutamide and that didn’t help either. In fact I found the Nilutamide caused the PSA to drop suggesting the anti-androgen became a fuel for the prostate cancer. 

At that point I had been on Zytiga and it took a month or two for that to kick in which I think is normal. I am still using Zytiga, Prednisone and Dutasteride (Avodart) which is there to inhibit the conversion of testosterone to dihydrotestosterone a very active form of (inaudible). 

For the moment my PSA has been dropping down to 2.1 and a high of about 7. I did see a radiation oncologist and he arranged for some scans of the bone mets which come up empty and happily. The follow up scans which were done at Peter Mac looking at the eligibility for stereotactic radiation of the lymph nodes as I discovered a few years earlier with the PET scan. I found that there were only two out of the original six that were active and the sizes of these were fairly small. 8mm compared to the original 22mm. The radiation oncologist I saw said he could hit them but at the moment it is probably worth sticking to what I am doing because it is working. 

If we hit it with radiation we may not know what is causing the improvement if and when the PSA hits a minimum and starts to increase in the Zytiga setting. So I have that option of stereotactic radiation later. Xtandi will become available also. There is a need to campaign to have Xtandi approved, for at very least, after chemo. (Inaudible)

Person #34:  I have Gleason 8 cancer and have been on hormone treatment continuously now for 10 years. I have been through the Cosudex and Nilutamide in addition to the Lucrin I am on and I am off both of those now. My PSA has been climbing gradually it got up to about 10 to 12 for a period of time up until 6 months ago and since then it has gone up to 16. My oncologist is attempting to get me onto a new Xtandi trial that is currently going in fact there are a couple of them. One is an Xtandi and Nilutamide look alike and the other was is just Xtandi. One qualification for that is my PSA has to double in less than 10 months. My PSA is not doing what it should do. It is not going up quickly enough. I started off at 16. I have gone from 12 to 16 over a six month period. A six week period after that I went from 16 to 16 it didn’t move.

I am about halfway through the next six week period. I will be getting another one done in November and I’ll see what I get out of that. It is a little bit frustrating you don’t want the PSA to be going up obviously. To get onto the active arm of this drug and at least to have a chance to you need to have this fast rising PSA to justify or to qualify for it. It is a bit of a problem you don’t want your PSA to go up but you have to have it go up to get active for the drug essentially. I can’t afford $5000.00 a month for Xtandi so I need to get onto something like this or have it available on PBS. I was interested to note on the email sent out by Jim in regards to Gerald Chodak and Snuffy Myers in The States and their comments about when you should start Taxotere chemotherapy. Snuffy Myers is quite emphatic that you shouldn’t leave it too late. Get on and get that done and see what affects or benefits you may get out of it. Then still have enough resilience in the body to take advantage of some of the newer drugs afterwards. That may modify my way of thinking a bit because I thought I would leave chemotherapy until last and maybe I shouldn’t be leaving chemotherapy until last. That is something to think about, any questions or comments?

Person #23:  I think that is worth talking to your oncologist about. The general impression that I have been getting from reading medical literature is the more different mechanisms you can attack of cancer growths simultaneously or in the very least in very quick succession the better. You greatly minimise the potential for the cancer to mutate into something that resists those therapies delivered one at a time. A lot of research still has to be done to confirm that.

Person #34: Thanks. I am beginning to get that impression myself as well. It seems to be the philosophy Snuffy Myers has got. Attack it as hard as they can and as quickly as they can. It is the philosophy he seems to prefer and proclaims it has pretty good results.

Chairman Tony We are looking for suggestions for guest speakers in future meetings. I understand  Person #23  has arranged a particular speaker for the next meeting in November. That is about pathology tests. That will be of great interest. There are a couple of other ones mentioned, pain control and prostate cancer. What can cause the PSA to rise after a prostatectomy and how to tell which it is? I am not sure what that is all about. We will be very happy to get any suggestions from any of the members in regard to future topics we can get a speaker in at our future meetings.

Person #31:  Have we ever had a practicing medical oncologist who is working a lot with prostate cancer on the line? I remember the Brisbane session we had at the cancer council by David Grimes which was basically updating us all on the options that were emerging. Many of us found that extremely helpful. Have we ever had someone like him do something like that over the telephone for this targeted group?

Chairman Tony We had a medical oncologist, Lisa Horvath, in Sydney who I am associated with and various research programs she is involved in. She was talking more about clinical trials. She did quite a valuable session but it didn’t necessarily address all of the things that you have alluded to. (ed: Lisa Horvath was a guest speaker on Friday 26 April 2013) 

Person #31:  It is a big ask for those guys to give up to two hours of a Friday morning.

Person #23:  I would be happy to talk to mine and he does talk on the radio from time to time. We would need to be clear about the questions and topics we would like to address just to give some guidance. When I see him next I will add him to my list of potential speakers.

Person #34:  I think the general stuff like hormone treatment and chemotherapy, the sequencing of treatments, the access to clinical trials. Clinical trials are a bit of a hit and miss affair.

Person #43:  The different combination of drugs I think would be interesting to get from an oncologists point of view.

Chairman Tony I think it is difficult for them too because the technology is so fluid at the moment that there probably aren’t enough clear guidelines for them on what the best thing is to do or timing all the best combinations. All of that is still evolving and you can’t expect them to prognosticate on it in a definitive way. A feel of the landscape of it would help. 

Person #23:  May be the use half an hour or so for members questions would be beneficial. I am use we would get plenty of those. 

Chairman Tony: There is a fine line there for them not to give a second opinion in particular situations over the telephone.

Person #23:  Another topic is the medical imaging technology, where they are relevant, and where they fit. I have asked Farshad Foroudi to ask if someone from Peter Mac can pick that one up.

Chairman Tony I think if you can chase up on that. It is a very important area and it is quite difficult to get somebody who has a detailed overview of it all.

Person #37:  I would like to hear from somebody and how they handled complete fatigue and exhaustion due to hormone treatment, particularly after exercise?

Person #23:  What treatment are you on and how long have you been on it? 

Person #37:  The treatment I am on is basically Zoladex. I was on Cosudex but I couldn’t handle it so I ceased that. Now I have started Zometa it is making me feel worse. In other words I am finding it very difficult. I have complete and utter exhaustion all the time.

Person #23:  It is obviously a very individual thing. I have been on the same regime as you and in terms of physical exercise it hasn’t been an issue. Some people like you really cop it. I think there is value in exercise. Is this aerobic exercise, resistance exercise or when you walk up a hill?

Person #37:  I do bike riding, treadmill and bit of walking. I am back into swimming and I find that terribly exhausting.

Person #23:  How long have you been finding it exhausting for?  

Person #37:  Ever since I have been on hormone treatment. I am gradually getting worse. Age probably gets to me as well I am 77. I am finding it difficult and frustrating because I am usually a very active person.

Person #31:  How long have you been on hormone treatment without a break?     

Person #37:  I have intermittent hormone treatment the oncologist takes me off it because he knows I can’t handle it. As soon as my PSA drops he takes me off it. I am usually on it for five to six months. My fatigue doesn’t improve when I am off it.

Person #23: The testosterone is probably fairly permanently suppressed.

Person #37:  Well that is right. The last time it was down to 3 or 4. My GP thought I might have had other problems like thyroid. He did a test and they were all fine and thought hormone was my problem. No iron deficiency not according to the tests

Person #43: I was talking to one of the members through the week and he said he has been on Zometa and has had 20 treatments. He said the first two were pretty ordinary but after that he hasn’t had any problems with it at all. It seems that the first one or two give people problems but if you can persevere with it for those first two or three you will probably be alright after that just from anecdotal evidence after talking to other people have said who have been on it.

Person #37:  Thanks. If this one wasn’t much better the second one I have next week I wasn’t going to continue. I will persevere with it a bit longer.  

Person #43:  He said he had 20 but the first two were pretty ordinary. 

Person #34:  I had three lots of Zometa about six or seven years ago. The first one was horrible. The second was much less of a problem. The third one was hardly any side effects at all. I would guess that Xgeva the other one which is supposed to bit a better than Zometa in terms of bone preservation it probably would have the same sort of side effects.

Person #23:  Is there anything in the dietary area that might be worth pursuing in terms of well-being?

Person #4:  I get absolute chronic fatigue from Zoladex. The Cancer Council gave me a pamphlet, from the Melbourne Cancer Council. Even though it doesn’t help me physically I have given it to my family and friends who have read it and now they understand what I am going through and how suddenly it can hit me. I can’t even wash a car these days and I am going to be on if for a long time. They have told me that they don’t believe they can cure the cancer and I am going to give radiation a go which I am starting next week. This is a great relief for me to have something done at last. Person #5  you are a marvellous man to get to where you have got to. I have got a 5 + 5. I am going to see if I can to 30 years.

Person #23:  It is good you are getting some action on radiation that might give you quite a substantial reprieve. 

Person #5:  If you are dealing with specialists they know what to do. At one stage there I was totally out of condition and a blood transfusion changed everything. I felt like a new man after that.

Person #34:  I have been on hormone treatment now for 10 years continuously and fatigue is my biggest side effect. If there is a diet I would love to hear about it. I am not aware of anything at the moment.

Person #23:  We should invite someone to talk about side effects and fatigue.

Person #9:  Another side affect, I have been having problems with loss of memory from Eligard for cognitive affect. One doctor suggests Estrogen patches. Has anyone had memory problems or any comments about that suggestion?

Person #34:  I also had short term memory loss. It is quite an issue for me now.    

Person #5:  I am exactly the same with short term memory loss. At my age though it is not that uncommon.

Person #37:  I have the same problem. 

Person #31:  Doing two things at once I used to be a master. Now I get confused and need distance in my focus.

Person #34: The first three years of my hormone treatment I was still working and it really had an effect on my performance and one of the reasons I tossed it in at 60.

Person #23:  There was a show on the ABC television, Redesign My Brain, about brain training if you haven’t seen it you should pick up the series. The take home message is how enormously flexible the brain is at rewiring itself if you do the right sorts of repetitive exercises. This is the new area of cognitive research. The show will motivate you.

Chairman Tony  thank you all for attending and participating today.  

 Meeting closes at 11am     

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

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Hi Guys


I have missed the last few phone ins but am interested in the above discussion -I have been on continuous monotherapy with Eligard plus Zometa but now my PSA has been climbing to 40 and have some bone mets -my Oncologist has prescribed anandron as a second line hormone therapy for a 3 month trial and if no action suggest that I consider chemotherapy as he does not want my PSA to rise anymore -I am in no pain and remail active-whilst I am not keen on chemo I believe it might be better to try it whilst I am fit an healthy -just turned 70 -the only alternative appears to be Zytiga but this is expensive unless chemo is first -interested in any comments or suggestions

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