Partners of men with advanced prostate cancer frankly lead the discussion. Minutes phone-in 26 July 2013

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Thank Secretary Nev Black for preparing these minutes. Blame Convenor Jim Marshall for anything missing.

Minutes of the Advanced Prostate Group Phone-in Meeting of Friday 26 July 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.

 

Chairman Bruce   Good morning everybody. Does anyone have any news that I should make a note of so that we can hear from you later? We have a new member Person #4 who has just signed up as a new member this morning. Welcome to the group and please feel comfortable. We try to limit how much we say in terms of time because other people might like to have a say and once we get towards the end it is okay with a bit more freedom. If you can tell us, in 10 minutes or less, what you want us to know about you so we can spark a support program. Over to you.

Person #4 I am 54 years of age been married 27 years. I have three children two boys 21 and 18 and an 18 year old daughter. I got prostate cancer for my fifty fourth birthday. I went out for a birthday celebration and woke up the next morning with a lot of pain in my bladder. I went out a couple of days later for Christmas drinks and had the same issue. Doctor did the PSA test and it came back at 540. They gave me the biopsy in January. 12 out of 12 biopsy’s came back with a Gleason score of 8 or 9. The scan showed that it has left the prostate it has gone to the kidneys, bladder, in the right testicle and all the lymph nodes throughout the chest. I have been told it is inoperable and if I don’t take the hormone treatment I probably will be pushing up daises within 12 months. Even with the hormone treatment the probability of going beyond 3 years is somewhere in the lap of the Gods.

Chairman Bruce Have you had any response to the hormone treatment? 

Person #4 So they put me on the hormone treatment in January. In April I went back for tests and the PSA had come down to 0.97. The tumours had shrunk by on average 50 – 60%. If it works and does its job maybe I will get to see 3 years.    

Chairman Bruce Some people do more than that. 

Person #4   I understand that. I am someone who likes to deal with what is probably going to happen not what might happen.

Chairman Bruce The main thing is that you are well and feeling well today. I hope you do not have too many night sweats or any other feelings like depression or weakness?

Person #4 That is probably the biggest issue that I am challenged by is that I get this prognosis with nothing wrong with me. I am as good as I was yesterday.

Chairman Bruce You are not feeling depressed with it at all?

Person #4 I have dealt with depression previously under another illness and worked out how to deal with it. I am not going to say I haven’t gone into depression but I have come out of it real fast. I recognised I was there.

Chairman Bruce Thanks very much Person #4. We will chat later on. Now we will press on with the morning.

Person #37 Person #4 what hormone treatment are you having, is it Zoladex? 

Person #4 I started Zoladex, the injection in the belly, and I tried Cosudex at one tablet a day but it gave me massive hot flushes. I rang the specialist and said this is driving me nuts so he put me on another one. He put me on Androcur. That stopped the hot flushes but turned me into a zombie. There is nothing in the bone, which they said is quite surprising.

Person #8   How are your wife and family coping?

Person #4    Pretty good. I am as open as a door on the subject. I encourage humour to have them openly discuss it and deal with it. I have said to them you are going to grieve before I go not after. I have asked them to make their own ‘bucket list’ of things they want to get done with me before I go. I said it was pointless me having a ‘bucket list’ I’m not going to remember a damn thing. They have all done that and we are working through it.  

Chairman Bruce Person #8 would assure you that wives are permitted on this session if they have the time. 

Person #4 I invited my wife but she was unable to be here.

Chairman Bruce I think we might move on and ask Person #8 to have a chat to us.

Jim Marshall   At some stage I think we might need to chat about having a partner’s only conference some evening.

Person #8   Good morning Person #3  and there is another lady on the line, Person #7? All the others are men so we will do our best. Person #3  and Person #7 a couple of weeks ago some of the men here in Queensland had a face to face conference at Greenbank. I was unable to be there but   Person #39 was asking around for issues that the wives or partners of men with advanced prostate cancer have. I have a copy of those 11 issues that were raised. I will quickly read through them.

Men’s emotional state at times.  

Concerns their partner may not get the best drugs available for the treatment of their cancer. 

Men’s change in emotions especially during the first course of the hormone therapy. 

Women are more often devastated than men on the diagnosis of their prostate cancer.  One woman described it as being kicked in the stomach by a horse. 

Partners are more often anxious about the outcome of blood test results than the patient.  This concern rises as the result date draws closer.

Patient mood swings, irritability and fatigue. The patient is often less able to do some jobs around the house or the yard that was his domain prior to treatment.

Men with long term sometimes months at a time, a catheter can come between partners.

Appropriate diet. Cooking is often the domain of the patient’s partner and this can mean in some instances different meals being provided for each person in the household. They mention the Mediterranean diet.

Patient’s long term partners often feel threatened if the patient is the sole or main provider. Loss of income.

Men become obsessive about their condition.

Couples often withdrawal from intimacy. Couples need to engage in dialogue on this subject and may need some therapy.

I added another one that I have thought of since.

How do we as wives or partners provide an environment at home which is less stressful, less demanding and conducive to harmony when men are not coping well?  For example, emotional boundaries when family or friends visit.

I thought they were very good issues that were raised. 

Just to tell you my story, I am a registered nurse. I worked casual on call at the Wesley hospital for 9 years before we retired in 2009 from Stamford to the Lockyer Valley. My husband was a farmer, he was in the Uniting Church ministry, and is a bus driver. When we arrived here in 2010 we couldn’t find a decent GP and I was pretty fussy anyway. Eventually he went and found a GP and found that after an 18 month period his PSA had risen from 1.8 to 6.9. He was 66 and I was 65. Prior to that he had his blood tests for the PSA yearly but never once did the GP in Brisbane do a digital examination. We retired in July 2009 and it wasn’t until the end of 2010 that we found another GP. This GP was conscientious and did a digital examination and then talked to my husband about prostate cancer. I still remember him coming home from the GP and telling me what he said but I didn’t take it that seriously at that moment because no other tests had been done.  

Then the rollercoaster ride began.

 Appointment with the urologist, 12 biopsies at the Wesley hospital back to the urologist to hear the bad news. Bone scan, CT of the abdomen saw a second urologist for another opinion. No sleep at night because he was up weeing and weeing. It was total shock at all that bad news. How does a woman cope? 

Everybody copes differently. I am a bit of an extrovert. I am an emotional woman. He is a quieter person keeps his feelings and emotions to himself. I have to read him like a book and I reckon I am not bad at it. I have to let him be quiet when he doesn’t want to speak and that is not easy when I want to speak about some of these issues I am concerned about. Life’s experiences, your personality and temperament all come into the whole scene. 

Where did I turn initially? I was really quite burned out physically and emotionally after all those years but I had to do everything possible because it was the biggest battle we had faced together in almost 40 years of a good marriage. My first phone call was Alex Woodland from the Toowoomba Cancer Council and he was extremely helpful. I wrote down every word he said. Then I rang beyond blue. I found a forum on the internet which was for a prostate cancer forum for ladies only whose husbands have prostate cancer. That is terrific because you can get on that anytime of the day and talk to these ladies and they would talk back to you.  

Seeing the word Ca of the prostate written by a specialist with my husband’s name was very very serious for me as a nurse. I have seen it written on hundreds of patient’s files before, Ca of this Ca of that but to see it written down about my husband was probably the most devastating news I have probably received for a long time. 

When we went to the second urologist, the specialist looked at the MRI noticed that the tumours took up the whole of the prostate gland, the seminal vessels and the base of the bladder. His Gleason score was 4+5 and he said this is the worst of the worst. He said you have an aggressively growing tumour, we could use brachytherapy, depends on your flow test, I will start you on hormone therapy today.  That was about 2 months after the initial diagnosis so we felt we probably should have gotten onto the hormone therapy earlier. 

Surgery is not an option. He failed the flow test. He was advised to have 8 weeks external radiation in St Andrew’s in Toowoomba. Prior to this he was supposed to have a rebore of his urethra and that didn’t happen. We asked the doctors if we can have this in September rather than June they said yes that is okay but then the Zoladex failed and his PSA started to climb. The radiation oncologist said ‘oh dear, have you had the rebore?’ [ED: Transurethral resection of the prostate (TURP)].

 We said no because you told us not to, we could wait. He said the cancer has spread throughout the body and your bladder is rubbish etc. That was pretty devastating. I still remember that appointment and coming down the Warrego Highway from Toowoomba in total shock not speaking to one another. We came home and we had two pies on the way home and as you know you don’t get into the pies, but we did, and that was great therapy. A bit of food therapy. Then we turned around and went back to Toowoomba that night and watched a movie. That was good to a lovely distraction from such horrible news. 

Because radiation causes inflammation to the urethra and even total blockage the specialist recommended Person #24 have a Supra Pubic Catheter, tube into the bladder through the abdomen drains into a plastic catheter bag on his leg done on the 30^th August 2011. The catheter had to be changed monthly by the Blue Nurses for almost 12 months. That was one of the hardest things because you get dependant on the catheter. The continence advisor at St Andrew’s hospital, she was just amazing, as you men know you don’t want us women nagging you about situations. It is good if someone else can work with you on some of these issues. She was really tremendous to us and even though she got a bit frustrated that he couldn’t build up his bladder tone at the same time we kept on keeping on with the whole situation. He clamped off his bag and found he could wee normally and eventually he built up his bladder tone and she said I am taking it out. Since then he has been able to wee normally and it is great because we don’t have that cold bag in the middle of the bed every night. 

After all the radiation, and the catheter, we found a good medical oncologist in Brisbane who was recommended to us and we see every 3 months for the PSA. The good thing is that he took Person #24 off all the hormone treatment approximately last August.  The best thing was that the hot flushes went away, got rid of the catheter, we got back to a bit of hanky panky which you think is never going to happen again and so consequently that was just great. Three weeks ago we went back to the doctor and he said your PSA has gone from 1.8 to 10. Of course that meant that it indicated circulating tumour cells in his body so he is back on hormone therapy with the injections and tablets and back to the hot flushes and disturbed nights. That is my story and I am happy to take any questions.   

Person #7   How long ago did you say your partner was diagnosed?

Person #8   In December 2010.

Person #7   My Terry was diagnosed in December 2009.I can relate to so much of what you are saying. He had the catheter for two weeks after his operation. Just so much of what you said the nightmares and the rollercoaster. Nothing this bad has ever happened to me in my life and I have had a few experiences. 

Person #8   How have you coped?

Person #7   I cope by being the researcher by finding out everything I could possibly find out about drugs on trials, about anything like that is current like that, reading books, finding specialists online like Dr Charles ‘Snuffy’ Myers. 

Person #8   Do you go to the Dr’s appointments with your partner?

Person #7    Every single one, he has never been to one without me.

Person #8   I found that is probably the best thing. I would sit quietly with the iPad and take notes of exactly what the specialist said. We always had questions before we went into the appointment which we would discuss together and I would also write those down.

Person #7    I agree. One of the things that really took us off guard is the fact that they said we you have to go and make your own decision about what you do.

Person #8    We found that difficult too. You think when you have never travelled this road before you think that they will make a choice for you with the journey because they have all that experience but they don’t. That is very difficult.

Person #7   The only experience I have had in the past was my mother had cancer and I went to the appointments with her as well at that time. This was ten years previously and they said with this type of cancer this is what we do. This is the treatment that we do for bowel cancer. You don’t have to go and chose your own.

Person #8   So you found it really difficult when they said chose your own treatment?

Person #7    Yes we did actually. Then in retrospect looking back on it now at least we had some control over it. We knew what we were going into.

Person #8   Person #24 did find that very difficult because he is not a medical person. He doesn’t know about all the things I had seen in a hospital and he did find it difficult. I think the men in this Advanced Group have shown us yes we do need to be in the driving seat of our lives and we do need to then listen to what our options are.

Person #7   Yes and if you research it properly you will know what the side effects are likely to be if any. Whereas when the doctors tell you what we are going to do you really don’t know those things and you’re not prepared.

Person #8   I think of that really bad appointment we had in Toowoomba with the radiation oncologist. I think that particular day he looked flustered himself and when we got home at night he had sent an email saying I didn’t do a physical examination can you come back on Friday. So Person #24 went back on Friday and then we went to see him the following Tuesday to work out what we were going to do and he apologised and we wondered if whether he had got us mixed up with another patient or whether he had just had a terrible morning.  Consequently every time we go and see specialists now we take a whole lot of fresh vegetables and produce from the farm as a bit of bribery and corruption so they don’t get us mixed up. Laughter.

Person #3    I supposed our story is longer than yours because it started in 2001. It could have started earlier if my husband had heeded me and gone to the doctor a lot sooner than he did. Like about 8 years before and kept checking on a series of things. I wasn’t aware specifically of prostate cancer. So in 2001 he did go and at that stage his PSA was 29 and his Gleeson score was 7. He went onto hormone therapy. The first thing I did was locate through the cancer council a support group. It was a rather dynamic group led by a dynamic leader and I think that is the most important thing meeting up with those men particularly the leader at the time and his wife. So we went and sat with them and that really was wonderful. 

Person #2 ’s decision then was to go onto the hormone therapy and the PSA was reduced down below to 1 or there about fairly quickly and satisfactorily not with all those traumatic side effects as it turned out. He then went for radiation. We had to go up to John Flynn Private Hospital, and I will say that was rather difficult, because he had to go up with a full bladder and travel from here to up there every day, Lismore to the Gold Coast.  At the time I was still working, and I am still part-time, I couldn’t go at the time so our daughter took time off and drove him up. Then all went well for about 6 years really continual hormone treatment and continual checking up every 3 months.   

This is why we are on the advanced stage, since 2010 where things changed. He has a tumour on the T11 vertebra and one on the pelvis that can be seen. There must be something else there because there is more activity with the PSA. It was 1.4 then suddenly it goes to 7 then 11 back down to 5.5 then up to 17 it has been doing that kind of thing.

 I guess at the moment it is going to be sooner rather than later onto chemotherapy. That is where we are at the moment. I have always gone to every appointment with him and Person #2  himself has been very involved as the Convenor, I suppose for five or six years now, of the group that he joined. He is so busy thinking about other people he doesn’t get much time for himself. He does meals on wheels etc. and that has all helped greatly I think. His actual body is very fit really and quite well.

Person #8   What is your exercise program?

Person #3    Person #2  does his exercises on his own. He does a lot of walking, bicycle riding and breathing and stretching exercises in the morning.     

Person #8   I think we realise that exercise is really important because of bone density and muscle weakness. I know Person #24 walks regularly and he does his weights out in the shed. Our son has been very good encouraging him with exercise and his gym work so he can build up his strength. He still drives a school bus and I think he enjoys that because he used to be a farmer and he used to love to see all the crops. It is a distraction from always focusing on the fact that I’ve got prostate cancer, I’ve got cancer. They need to have other interests.

Person #3    I would think this is one of the most anxious times apart from the initial situation. One of the most anxious times I think is now because I am really scared of chemotherapy. I find it a bit daunting. 

Person #8   Particularly with the secondary when you’ve got metastases that is always a bit scary. For me because I had been a nurse and I have seen people in all sorts of terrible situations. I suppose I had this fear of what is going to happen next? Where is this cancer going to spread to? We go one day at a time we still set our short term goals. We do support each other as much as we can. One of the things that worry me is, sometimes our adult children, who are 20 years or so behind us, sometimes don’t know the journey we travel and they have no idea.

Person #3    We are in a different situation from the average I had my first child at 40 and my second child at 42. We are older parents so our children are 28 and 30 so of course they have been going through all of this since high school and all through university. So we do realise we are in a different sort of situation than the average of my age group. We have a grandchild.  

Person #8   The hardest thing for me emotionally was when our daughter from Western Australia came home to have her baby and she was here for about 3 months. She has a delightful little girl who was about 18 months and when they left Person #24 had become very attached to this beautiful little girl and he was in tears. To see him in tears I have never seen him in tears our whole married life in one sense it probably shows that men do have emotions and maybe that is a plus to see it.

Person #3    I don’t always go to the groups as I am often working I had reports on several occasions that Person #2  has reported that having a granddaughter and to be around grandchildren is a great motivator in keeping well.

Jim Marshall   Just a couple of technical matters. Person #8 you have the floor for another 15 minutes. The men out there no comments until after that time please. 

Person #8   Person #7 would you like to make a comment.

Person #7   The other thing I would like to bring up is we have changed our diet and that was very difficult to start with. We gave up all dairy and we are basically on the Mediterranean diet. We eat a lot of fish, a little bit of chicken, lots of vegetables we don’t cook in anything except olive oil. For both of us and that is healthier. It is a heart healthy diet as well. More men seem to die of heart problems than actually of prostate cancer.

Person #8   My mother died from coronary heart disease at the age of 68 and I am 68 now so I get on my bicycle and do 25 kilometres every Sunday morning. Exercise certainly has to be a part of our daily program.

Person #7   I can’t say Terry is sick of exercise but he does still work and it is a physical job. He chops wood, walks the dog and does stuff around the house. You can’t say he is a couch potato in any way at all. He says he does enough exercise by working and living. Can’t make them do things they don’t want to.

Person #8   Do any of you men want to comment on what any of your wives or partners have said?                    

Person #28   Is Person #24 on Zometa?

Person #8   No, Eligard and Nilutamide.  

Person #19   Basically there are 2 major sorts of drugs. One of them is the drug you get injected, often every few months, like Zoladex, Lucrin and Eligard.

The other ones are called anti-androgen the most common being Cosudex. Another one of that kind is Androcur which we have heard that mentioned. The third one is Nilutamide and it is sometimes used when the first two have failed or you are having problems with the other one. It is in the same family as the Cosudex tablets and the Androcur tablets. 

Person #8   So far Person #24 has terrible, terrible, hot flushes and half the time he is awake at night either going to the toilet or the hot flushes. Because the Zoladex and the Cosudex didn’t have a full effect a couple of years ago that is probably why they changed it. Is that right?

Person #19   Nilutamide is often used to replace one of the others if there are problems.

Person #3    When Person #2  first went onto Lucrin Depot he was really hit for six on the first afternoon. The Lucrin Depot lasts for four months and the doctor had not experienced that before. How it happened was he went to the doctor and we live very near. He came home and I got call in at school to say he can’t come to pick you up and I thought now that is the most unusual thing. He literally was crawling on the floor to get to the phone to get me he couldn’t stand up. For 24 hours it was pretty awful but I did get him back to the doctor rather quickly because he was vomiting and the response was quite awful. The second time wasn’t as bad because we were ready but we came home and he had to lie down for a few hours. The doctor said he had never had that happen before but every time he has that it’s got better he obviously has built up some kind of immunity to it in some way. I thought I would just mention that because it might happen to someone else. 

The other thing I was going to comment on visiting the doctor and having to wait until you get there to get the PSA results. We have gone from an urologist to an oncologist in only recent times. Not being able to have access to the PSA before we get there and then be told, and you don’t feel the doctor does not know either until they open the file. Sometimes when you hear it goes from 7 to 17 you get a bit of a shock and you have to gather your wits and start thinking now well what is the next response? It would be much better if one could get the PSA results a bit before, which we have managed to do by ringing the receptionist in the morning of the day of, the appointment. I don’t know if anyone else has had that difficulty we’ve had that all along with the GP, urologist or oncologist.

Person #8   I agree Person #3  the last time we went, Person #24 was literally in total shock, because when he heard from 1.6 to 10 he suddenly realised. I looked at him and he was in total shock because he thought the radiation has got it all but that wasn’t the truth at all. I think that is what we will do, ring the receptionist and ask for the PSA so that you are physiologically prepared.

Person #3    It made a very big difference the other day and we weren’t expecting this we didn’t really think it was going to go up or stay stationary but unfortunately it had gone up again. We were better equipped when we got there 5 hours later to absorb and have the right questions to ask. 

We are going away to house sit and the doctor said that is a really good idea go and have a good break. When we come back we will be starting the chemotherapy fairly soon. There is a nurse here who specialises in prostate cancer and he said get onto your Echinacea, Vitamin C to build up immunity because it is when you are on chemotherapy that your immune system really goes down. If anyone has any suggestions on good things to build up ones immune system that would be good?

Person #7   I don’t know how your husband would feel about it but juicing, have you got a juicer? Do you use fresh juice with vegetables and fruits? That is very good for you. All the micronutrients in that would help the immune system. I am talking about green vegetables, kale and cucumber.

Person #3      I will say what we have here we are in the right climate just not too far across the border and we have some pawpaw trees. He did for a number of years boil up the leaves and the juice of the pawpaw leaf. The one thing that I can only say in terms that keeping tabs on it, as a very amateur researcher, that every time the results on his liver were much clearer when he was on that pawpaw leaf juice. I can’t vouch for anyone else but that always seemed to be the case. Used the baby leaves and just boiled them and had the juice off it. You can buy the extract but we’ve got them growing so that we can go down and pick them in put them in the pot boil it and then he drinks the juice. It is rather bitter but it looks like apple juice so you can con yourself. [jm: there is no evidence that pawpaw leaves have any effect at all on prostate cancer.]

Person #19   The big thing is to avoid infections. Everybody in the house must be extremely clean and you stay away from other people. There is a posting on our website. If you can’t find it send me a message and I will send it out. 

Person #3     I did look at that yesterday and I thought that was extremely helpful. So would you suggest say vaccinations against the flu which neither of us has ever had? I was just wondered if that is something we should look to do? 

Person #19   Dr Snuffy Myers certainly endorses all vaccinations. You should discuss that with your doctor seeing it is going to be very close to chemotherapy. The shingles, Snuffy Myers said, is very distressing for men who get it in advanced stages of cancer. Getting the vaccination for it is a good idea.

Person #8    I just wanted to tell you a story about an Eligard injection and it is a serious situation. My husband’s oncologist ordered the Eligard injection and he went to the chemist and he got the two part prescription. He went to the local GP. Our situation here in a country area his original GP had gone, there is a new GP who didn’t know us at all and my husband trusts medical and professional people. The doctor took his blood pressure and said it was a bit high. The nurse will give you the injection. The nurse looked and the packet and said there are two syringes here, one for now, and the other for 3 months’ time. I will put it in the fridge. She said lie down on the bed gave him the injection. 

He then said what did you inject? Thinking it was like the Zoladex with the little tiny rice like thing. She said it’s a white fluid and with that she jabbed it in again. He went out to the reception. She then came out and said that other needle got to be mixed. We need to mix them up, mix them together, and then gave him another one. He came home to me and he said she gave me 3 needles. Person #8 that doesn’t seem right does it? 

So I had the Eligard instructions from the drug company from a previous injection some time back and then I suddenly find out that one of the injections is a powder, the other one is a gel and there to be mixed together properly and then injection with this large gauge needle. I sort of felt terrible about it so I rang up the specialist and one of the oncology nurses said no I think it has been given incorrectly. So we were left in a terrible dilemma. 

Person #24  I questioned him closely and the specialist said ‘I will send you another script’. 

The questions were A. What did she inject? B. Were they properly mixed or not? It didn’t seem to us it was. We were terribly concerned. What are the side effects if you have another one? There were a lot of questions raised in our minds. This was on a Friday and we had to cope with it over the weekend. I thought I am going to ring my cousin he is a medical specialist not in this area but orthopaedics. So then he rang around all these people in high places. He rang back and said this is a complex procedure this is the way it is. I said I know exactly. I read the leaflet and I know exactly what you are saying. The long and short of this story is we did receive another script we found a different GP and we went and had the injection again. 

I am raising the issue because of the fact and some of the men say that when they get the Eligard they get a doctor to administer it because it is a complex procedure. I am just raising that because it is was a pretty serious situation what happened to us.

Person #28   Person #8 I think you should also post that information onto the electronic Queensland Prostate Cancer News so it is publicised. That is the electronic newsletter you get. No names obviously.                                       

Person #8   I did write the whole experience out because this was quite distressing. You imagine if Person #24 had not questioned it and you imagine in 3 months’ time and he has his PSA test and suddenly his PSA is out of control.

Person #7   That is scary.   

 Person #23   I did hear Person #24 and Person #8’s story earlier just a few weeks ago. How has Person #24 been in terms of side effects from the impact of all this?

Person #8   He is alright. Person #24 is not the sort of person that complains a lot. He is still driving his school bus I always make sure he has a one hour rest in the afternoon because he gets up early. Side effects wise he’s just had the hot flushes which don’t seem to be as bad as they were. The doctor did give him a script for Gabapentin for the hot flushes. He is not going to take those though because he doesn’t want to be filling his body up all the time with all these drugs. Generally speaking the hot flushes have come back but nothing else he is alright.

Chairman Bruce I think we should return now to normal business. Thank you very much Person #8 for covering an area with the help of Person #3  and Person #7 and some of the contributions from some of the men. Person #2 is going to update us with his situation.

Person #2     Thank you to Person #8 from Person #3  and myself. Diagnosed in 2001 a PSA of 29, radiation, stayed down low for a long time. 2010 PSA was going up. Scans showed 2 lesions and in my my lungs. I think they are the more dangerous. I have been on Lucrin since 2011. Cosudex was added after a rise at one point but discontinued. My understanding is that Cosudex can if it stops working begin to feed the cancer. Another scan very recently PSA had gone in a short while from 11 to 14. No significant increase though in the 2 bone lesions and the Spicules. There is a toss-up said the specialist as to whether they had grown and if so not much and that is in a year and a half which is encouraging. Now the oncologist indicates and I suppose this is the business end of things regarding chemotherapy. I would commence it in September or October if there was a marked increase in PSA or a clear advance of the bone and lung lesions or if I was experiencing symptoms which I am not. I am perfectly healthy apart from the cancer. The regime the specialist proposed would be Docetaxel or otherwise known as Taxotere. Followed if necessary by Zytiga presuming it is on the PBS by then, then Cabazitaxel as a last resort option. I am just anxious to get confirmation on that order of things, Taxotere (Docetaxel), Zytiga and Cabazitaxel. I understood from the specialist that funding rules if nothing else. That indicates the way to go. Thank you for listening and or any suggestions.    

Chairman Bruce I am sort of on watchful waiting while my PSA is slowly rising. I think that if your situation is holding there is no reason to rush in because the chemo may upset you or it may do you a lot of good. But if it is going to do you good it will do you good in several days’ time rather than tomorrow necessarily. If you have to have it tomorrow you have to have it tomorrow. 

Person #19 here just to answer those couple of questions.  Cosudex does indeed eventually become a food for the cancer for some men, about one third of men. The way they find out is they stop the Cosudex and if your PSA goes down it was used as a food. Otherwise doctors use it either continuously or sometimes, which sounds like they you, they just use it for the peaks to get them down.              

Secondly the order the government will pay for it is Taxotere, Zytiga and Cabazitaxel and that looks like it maybe the best for survival but with limited evidence, it is not really known. People with money, or if you are in the United States where the insurance companies will pay for it, one may chose to go straight onto the Zytiga because it has got much smaller side effects that Taxotere. [jm: Person #19 may have been wrong in saying that. For men who can spare the $3600.11 per month, it seems that starting with Zytiga may be better than starting with Taxotere, but the studies do not include Cabazitaxel.]

Person #2    That is very good.  I have got to say in general I seem to tolerate hormones well. I don’t expect chemotherapy to be a breeze but I am kind of looking at it and it might not be terrible.    

Person #19   Some members have found it fine while others have had quite significant problems, but I will leave that to others.   

Chairman Bruce Any comments about the chemotherapy?

Person #28   Person #2 have you asked the question how much longer life expectancy if you go on the chemotherapy treatment will it give you. Is it going to be 1 month, 2 months or 6 months may be that is something you have to consider as well. The quality of life verses the quantity of life. 

I just have a question the ladies raised about trying to find out your PSA results before going to the doctor. Can I suggest that you ask for a copy of the results at the time of having the vials of blood drawn. Your doctor or where ever you have your blood taken one of the private companies do it you should ask for a copy of the results and they may give you these results. It is your property it is not theirs. Sullivan and Nicholaides have given me the results. I get my results from them when I go to them.

Person #2    I did that once and they said no. This was Sullivan and Nicholaides and they said you have to get it from the doctor. As long as we can get them from the receptionist at the specialist in the morning of the day or the day before perhaps that probably satisfies us. It is interesting to know if the doctor puts my name on they should give it to me. 

Person #6   I asked for it to be sent to my GP and specialist and had to make an appointment at the GP to get the numbers before I saw the specialist.

Person #19   I am not really sure if whether that is the case or not. I do know that your GP has access to all your records and he would be able to tell you. Whether you want them in advance or how far in advance depends on the sort of people you and your wife/partner are. I got 2 phone calls from people in distress that got their results from the GP and without the wise advice from the specialist that was sort of an extra shock. I always go to the GP a week before to make sure I get the test done there and I get it from my GP. Your GP has access to them all and can give them to you. You should think about whether you’re prepared to cope with finding out that this is the next step basically and there will be a next step sometime.

Person #6   Just to comment on PSA results, I have spoken to my medical oncologist and said I would like to get access to those results prior to seeing him and he has agreed to his receptionist letting me know a couple of days before attending the appointment .

Person #23   Can I just revisit that Cosudex question again please? I have just been put on Cosudex with Eligard and that is the first time I have heard the way that it can ultimately react to promote the cancer. Is there anyone on the line who has had that actual experience? What I heard Jim say in a case like mine if you’re on Eligard and Cosudex and the PSA started to rise at the next 3 months in blood tests I should be sure that my GP and my specialist answer the questions to whether this could be attributed to the Cosudex is that what it amounts to?  

Person #2   Mine was discontinued after a rise at the time I didn’t know and it was Jim who told me later that may have been the reason. I will be interested at my next PSA in September. For example to see if it has steadied or theoretically if it has gone down that would seem a clear indication that it was the Cosudex that was fuelling the fire as it were. 

Person #19   One of the reasons I have had the monthly PSA and testosterone test is that the medical oncologist in America Dr Steven Strum recommends that. The second thing is, that being on Cosudex, I want to stop having Cosudex as soon as the PSA starts to go up in case it is the Cosudex acting as a fuel.

Person #23   That is very valuable to hear.

Person #28   I will know on Monday if I come off Cosudex. I have been on it intermittently, but full time for the last 12 months. My PSA is rising and the medical oncologist said depending on your next results we might take you off it for a while and see what happens. I have a PSA done every 6 weeks.

I changed urologists a few years ago and they put me onto Androcur (Cyproterone) after Cosudex and it nearly killed me. That was horrendous but everyone responds differently to the medication. My PSA went up with the Androcur plus everything else.       

Person #38    I don’t know if I am out of turn here asking this question. The lady that does the pawpaw leaf tea is there any possibility that I am able to get in touch with her. I would like to discuss this with her I have been on this now for 5 years. I would like to have a word with her husband.   

Person #2    exchange of phone numbers will be fine.

Person #19    Person #8, you asked about another name for Cosudex. Its generic name is Bicalutamide. I will send you an email and I will give you all the details.

The other one you mentioned - Cyproterone - is another name for Androcur. 

Chairman Bruce Is there any others who would like to say a few words about their current situation?

Person #1   I’m fairly newly diagnosed and early in the journey. I was diagnosed last August with a Gleason 9 and some metastases in the lymph nodes and one in the pubic bone. They immediately prescribed Eligard which I have been on ever since. There is a study going on in Melbourne by Dr Farshad Foroudi at the Peter Mac Hospital. He is looking at people who have less than three metastases and they are using Stereotactic Ablative Body Radiosurgery. I would be eligible for the trial with a limited number of 12 if I didn’t have a prostate. Normally once the cancer is outside the prostate they don’t take out the prostate. In my case I had the surgeon being prepared to do it to enable me to go onto this clinical trial. I have just had a radical prostatectomy. I am going for a PET scan in a week. I have already had a PET scan for the trial but they are redoing the PET scan and I am going to have the radiation treatment on the spot next month. It is an interesting and different journey and I am a bit of a guinea pig.

Person #5   Paul do you know what that trial is called?

Person #1   The trials name is ‘POPSTAR’

Person #23    In June after being 18 months without hormone treatment I got a bone and CT scan and for the first time in 14 years, that was when my original diagnosis was, there is evidence of activity outside. Two lymph nodes in the pelvis area enlarged and a bone spot on the back side of the pelvis on the right hand side. The response of the urologist would like me to go back on Eligard and Cosudex. I am happy with that. He mentioned to me this trial which I may qualify because I’ve got one bone spot actually showing. My radio oncologist he preferred not to intervene and not put me on that trial. I really am free of symptoms there is no sign that this spot at the back is giving me any trouble. I am happy with that. I would be interested to know other people’s reactions of course. My next PSA test is going to be a rather crucial one. 

Person #1     One of the things with this high intensity Stereotactic Radiation it is that they hope they can completely sterilise the cancer matastases. Where I am going is I have now beat off the cancer load in the prostate and got rid of that and really all I’ve got now is this one spot on the pelvis.  If they can nuke that and get rid of that it is a matter of wait and see what the nasties circulating around in the bloodstream do. Everyone is different by in my but in my case with only limited metastases from my point of view it is worth a try.

Chairman Bruce Dr Snuffy Myers of course was one who had a solitary metastases away from his prostate area and he had that blasted and apparently he hasn’t got any others but there is always a risk.

Person #19   It seems to me  Person #1  case involves two currently experimental procedures. The first is the removal of the prostate. The idea is that chemicals are travelling from the prostate helping prepare bones to take up cancer cells travelling in the blood and form bone metastases. You have a lot of cells circulating in the body but most of them don’t stick. It seems that from the research that they have done that the chemical supplied from the prostate cancer in the prostate helps with that. Another one of our members has been treated on that theory he has a few metastases and they have given very high radiation on his prostate. Radiation on his prostate is to de-bulk it and to try and stop chemicals travel from the prostate to start new metastases. 

The second experimental procedure is the treatment of oligometastatic disease, and that is burning metastases while you  only have a few. The radiation is about 9 times the dose that you would normally burn it for pain. The theory behind that is it seems from other cancers where it is used and worked that what happens is when you burn the metastases very hard it produces a lot of chemicals into the blood which prime your immune system to attack the metastases. Treating the metastatic disease with this very high radiation is only done to the first few metastases. Snuffy Myers reports it being used in up to five metastases. There is a medical oncologist in Brisbane who will only do one. In the trial at Peter McCallum and the number of metastases that they will treat is no more than three. 

So there are two different procedures. One is de-bulking. That’s getting rid of the cancer in the prostate so it is not supplying the food that particularly to bone and other places to take metastases. The second is burning a few early metastases very hard.

Dr Farshad Foroudi, the doctor who is the chief investigator in the  PeterMac study, will speak to us about the trial, and others coming up, at our next phone-in meeting on Friday 23 August at 9:30 am Brisbane, Sydney, Melbourne time.

Meeting closed 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.