Minutes of Advanced Prostate Cancer phone-in 29 September 2012

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Minutes: Advanced Prostate Group Meeting 28 Sept 2012

Prepared by : Secretary Nev Black

Chairman Dr Bruce Kynaston: Opened the Teleconference at 9.35 am on Friday 28^th September 2012

Apologies: David Abrahams, Geoff Buttfield, John Ritchie, Greg Bilson and Clem Forman.

Chairman Bruce acknowledged the death of eighty nine year old member Eric Wendt of Ipswich. Sympathy of the group was extended to Eric’s wife Evelyn. (While Eric had advanced prostate for a number of years it was not the cause of his death).

Chairman Bruce also acknowledged the presence of a number of ladies attending the teleconference. This is the first time wives or partners have officially been present. The first forty minutes to be given over to the ladies and the second half of the teleconference for the men.

Chairman Bruce then welcomed guest speaker Maggie Fincham from the Gold Coast.

Maggie: What I wanted to talk about today is we can’t experience love without feeling loss at same time. Married, to Graham, at the age of 21 and becoming a widow at the age of 49, they experienced 28 years of happiness together. Her husband died of heart disease, literally in her arms one morning.

Maggie married Ross a few years later. At the age of 56 Ross was diagnosed with prostate cancer. Dealing with the diagnosis and treatment proved an impossible strain on the partnership, and eventually the marriage failed.

Maggie had lost her father and grandfather to prostate cancer. So prostate cancer is something she is very aware of and feels very strongly about. Disease being disease this talk today is about finding courage and strength to keep you going despite knowing you are going to lose a loved one.

Maggie’s first husband had a long history of heart disease, and she had lived for twenty five years in the fear of losing someone she loved. She now realises her worry and anxiousness didn’t amount to anything and didn’t add a minute to his life. Ladies, you are in a situation now. Facing all the worry and fear, it does not really matter in the end. For instance if her first husband went out for a walk, we didn’t have mobile phones in those days, and he took longer on a walk than she expected then she imagined all sorts of terrible things that might have happened to him. If she heard a siren that made it worse, but usually he had just met someone and he was just talking, so she had to learn to let her worry go. Worry is stirred up by fear. Her biggest fear was she was going to be left on her own, but that comes in its own time and you can’t imagine what it is like so you have to let it go and enjoy every precious moment you have now. It is important to learn to trust you will be ok and be confident with that and find peace with yourself, be at ease with yourself for when the time come your friends and family will support you when you need them the most. You have to learn to trust you will be all right.

Maggie assured the group members that you will be all right. There were times when she felt angry because she felt so helpless and hopeless about the situation she was in. But that is ok as long as you don’t become angry or aggressive with others. She found driving in the car with the windows wound up, yelling at the top of her voice, was good for her as it helped to release some of that anger that she felt. It is also important to find a balance in your life. If we find ourselves thinking the same negative thoughts over and over you become stuck in your thinking. So you need to find a balance in your own life. When we get used to caring for someone our caring can become compulsive, so do not smother them. Find ways to engage with other people. Take time out to catch up with your friends and find others in a similar situation as yourself. It is also important to be alone when you feel you need to be alone especially when your capacity is low. You may feel loss and grief now but it is really the loss you are going to feel in the future. You need to find your own voice. There was time when she felt so alone.

After the death of her first husband she took up painting. After working each week, every weekend she would paint for the first twelve months. Every wall in her house she painted and when she run out of walls she went out and bought the biggest canvas she could find and painted it.

Maggie had always loved art at school but never had any lessons. So she taught herself how to do it. She has is the last couple of years been teaching others to draw.

Consider doing something you have never done before. She took a trip to China which she had dreamt about for years and years. Recently she has been doing a great deal of writing which is a great way to express yourself. Try and enjoy today and be grateful for it. Find joy and acceptance in the moment and the little moments throughout the day. Try not to analyse everything too much. Before going to sleep at night think about all the good things that happened through the day and be grateful for those special moments. In time you will amaze yourself as you will have the resilience, resourcefulness, courage and strength to cope with what life throws at you. Maggie now knows she has amazed herself over and over again.

Chairman Bruce thanked Maggie and suggested to the group to sum up what Maggie said, when you look at yourself in the mirror each morning say, let's make this the best day for the rest of my life. The chairman then asked Maggie to lead the discussion with the other ladies.

Maggie then invited Partner #1 to speak.

Partner #1 said she had very little sight, less than two percent, so life is very difficult for her. She does worry a bit, but will cope when it comes time for Man #1 to pass on from this world, as she has faith. Partner #1 said she belonged to a craft group, and she knits by feel, believes in God and suggested worry doesn’t get you anywhere.

Partner #2 then said she could relate to a lot of what you were saying. I have been there, had the same sort of feelings that you have expressed so beautifully. Partner #2 said to Partner #1 she had nothing but admiration for her and thought she was wonderful. Partner #2 has some other things that keep her going. She was a full time teacher up to about eight years ago but now does some part time work with children with learning difficulties.

When you work with other people that have difficulties you forget yourself and feel for them.

Maggie agreed you become so absorbed with what you are doing you forget about yourself.

Partner #2 is the convener of the partners support group in Brisbane. The group has had some wonderful and inspirational meetings. Partner #2 also gets telephone calls from other ladies as well when they just need to talk to someone. That is all that is needed sometimes, is to talk to someone they can relate to.

Partner #3 is from New Zealand originally. It has been an extraordinary journey with her husband who is forty six with advanced prostate cancer. Partner #3 is currently a third year undergraduate social worker. Her husband lost his father in December last year to prostate cancer. Man #3 got his diagnosis about a month before his dad passed away so Man #3 and Partner #3 kept the news to themselves as they thought the family was going through enough at the time. They sat down and told the family at an appropriate time some time later. They have done counselling but feel isolated because of his age. Partner #3 said they were grateful for this support group.

Maggie told Partner #3 she may be able to put them in touch with another couple of similar age group at the coast.

Partner #4 said Man #4 was diagnosed twelve months ago. They are planning for the future but at the moment they are doing just fine. They feel they cope best with knowledge. They don’t cope when getting a little knowledge and know nothing about it. So they find as much information as possible and come to terms with the issue and that works for them. Worry is a going over and over a problem without coming to a solution. If you cannot solve a problem you must not let that problem consume you.

Partner #5 said this morning she is feeling a little bit happier. She is an emotional person and she thinks the men are too but sometimes they don’t express their emotions openly. As a wife and having been married for so long she has a connection with her husband's thinking and how he is feeling. When Man #5 gives her positive feedback she feels much happier and it is a positive for the day. Man #5 had a urinary tract infection and she took him to the doctor last Sunday morning.

Having a catheter puts him at greater risk to infection and his antibiotics had to be increased today. Working with animals also increases risk to infection. Escaping for a day now and then also helps to cope. Partner #5 also expressed her thanks to Wendy and Jim for enabling the group to be able to have these conversations but would still like to see one day a conference or something like that. Come to the coast or somewhere it was central.

Partner #3 expressed her support for the idea the group gathering to meet the other men and women to interact and engage with. Friends can be more in denial than us.

Maggie agreed with the concept as the closest family members don’t always understand what you are going through. So to connect with people that do understand makes a huge difference.

The ladies agreed it was not always easy to share all the details of prostate cancer with their children.

Chairman Bruce suggested the presentation that Partner #2 gave at the Brisbane Support Group Meeting be sent out to the ladies present this morning, with Partner #2’s approval. He also suggested it may be possible to have a separate ladies teleconference group. Partner #5 said she had read Partner #2’s presentation and thought it should be circulated even more widely. With approval, Jim said he would provide the ladies with each other's telephone numbers to allow private contact.

Maggie thanked the group and the ladies for the opportunity to share information and wished everyone the very best.

Jim thanked Maggie for her wonderful contribution.

Chairman Bruce asked if any men wanted to update their progress.

Man #1 said the last time he saw his specialist recently they were worried how things were going to progress for him. While he does not have any bone pain at the moment they suspect he may in the near future. His next visit is about Christmas time. His next line of treatment would be soft chemotherapy. At the moment he is feeling quite well and taking it all pretty well. Whether there is something else he can do before he goes onto to chemotherapy he is waiting to see if there is anything they can think of.

Man #10 replied there may be something if we are lucky. At November's PBS meeting they decide if a drug by the name of Abiraterone (Zytiga) is to be added onto the PBS. This may be another possibility after Chemotherapy. The options you have in front of you now are, the most usual Chemo for starting is Taxotere also called Docetaxel.

Man #6 said they mentioned that to him

Man #10: After that there is a drug that has just been approved called Cabazitaxel. Both of these extend your life. After that there is a Chemotherpy called Mitoxantrone which does not extend your life but gives you a much better quality of life for coping with pain and other problems. It has enabled people to return to a normal life. As has Cabazitaxel. There has recently been a published account of a man who failed about ten different treatments in America had Cabazitaxel and within days he was back to work and doing everything normally. So what you have the moment is Taxotere followed by Cabazitaxel followed maybe by Mitoxantrone. With possibly Abiraterone after Taxotere. Abiraterone which is not a chemo it is a sort of super ADT, like the ADT you are on.

Man #8 wondered whether Abiraterone, they have done trials pre commo in the past when you have rising PSA & diagnosed metastasis somewhere, which you may have from what you're saying. There is another drug called MDV3100, which is a new one and yet a third called TAK700 and there maybe clinical trials available, still open pre-Chemotherapy if you've got those other conditions. If you think you should confirm some options there, maybe to try and get on one of these other drugs on a clinical trial basis before you do Chemotherapy.

Chairman Bruce the thing about that is you would need to see your Oncologist to get the inside information if you are not seeing a Medical Oncologist you may not get that option.

Man #8 said you would need a referral from a Medical Oncologist. Then he asked if Man #6 has access to a Medical Oncologist?

Man #6 is under Urologist Dr Man #3 Preston and Radiation Oncologist Dr Margot Lehman he sees them alternatively every three months.

Man #8 replied it might be worth Man #6 looking in to it and seeing if his Oncologist can track down any information about that possibility.

Man #6 asked about Dr Simon Wood starting up a new trial was it to do with Vitamin E as an alternative to a Chemo drug?

Man #10 said they are going to take 50 men from Brisbane but we haven't heard when it is starting.

Man #6 said he has spoken with Doctors Simon Wood and Irena Oleinikova. They are at the PA Hospital.

Someone suggested Man #6 sees a Medical Oncologist and Bruce agreed.

Man #8 agrees also.

Man #6 said he has just been seeing the specialist that looks after him.

Chairman Bruce asked if anybody else would like to add to the conversation.

Partner #5 asked Bruce if her husband should be seeing a Radiation Oncologist along with his Medical Oncologist?

Bruce replied it depends if the Medical Oncologist is switched on enough to know that a Radiation Oncologist could help with this particular problem.

Partner #5 so you appreciate having access to knowledge from your three specialists?

Bruce if he needs their advice their on tap, they are aware of his case.

Partner #5 thinks that maybe her husband should reconnect with someone from there.

Bruce agreed that this might be a good idea

Man #3 adds he is under three doctors, a Urologist, Radiation Oncologist & Medical Oncologist at the moment and has just finished Radiation treatment so he hasn't had much to do with Medical Oncologist they are just in the back ground and keeping up to date with the progress because that will probably be the next step in his treatment. So they are there but the Urologist & Radiation Oncologist is doing all the work at the moment and in the future the Medical Oncologist will come on as well.

Partner #5 asked about going back every three months to see the specialist?

Man #3 replied he finished radiation a few weeks ago so at the moment his appointments are scheduled three months apart to keep tabs on how things are going. He said it could be like that for a year to assess how the Radiation Treatment went and he is also on Hormone Therapy. They are checking on the progress of that as well. Once that avenue runs out he will then go on to see the Medical Oncologist.

Chairman Bruce explained you can have an appointment with your specialist but also have an appointment with your GP to see if you should go to see the specialist or if the GP can handle it for you.

Partner #5 - said her husband's GP left and now they are faced with the problem finding a GP who will take a personal interest and has the particular knowledge.

Chairman Bruce agreed it can be a problem and suggested Partner #5 ask around to find a GP that knows what they are talking about.

Man #7 suggested Partner #5 go to Dr. Janus Van Heerden at Withcott. Dr. Janus’s knowledge for Prostate Cancer has helped him personally.

Partner #5 thankful for the information would like a Doctor with the required knowledge and someone you can talk to.

Chairman Bruce told Partner #5 to get a hold of all the information you can about your case.

Man #3 said to Partner #5 she should feel no loyalty to stay with a Doctor who cannot give them the care they need there is no point going because at the end of the day it is all about the health of your partner.

Partner #5 said how there are ongoing situations on this journey.

Man #10 after your visit with your new Doctor what you should do is ask for your husband's records to be sent over.

Chairman Bruce asked if anyone else would like to participate.

Man #5 McKay I am off Hormone Treatment and I am still getting hot sweats and I get a stomach ache at the same time. Does anybody know why that would be?

Chairman Bruce Cannot help but said it is apparently unusual.

Man #10 had not heard of this either but confirms hot sweats can continue after you stop taking ADT. He suspects it is because ADT gets rid of Testosterone and it can take awhile for the Testosterone to recover and in some men it doesn't recover at all. He has gathered this information from talking to other sufferers and has heard the severity of the flushes fade over time. It is possible for this to go for years and to get your GP to test your Testosterone this may give some guide.

Man #9 understands the hot flushes are due to Estrogens variation not Testosterone. If you're on LHRH Agonist your Estrogens has been affected as well and quite of the few side effects from Hormone Treatment are actually Estrogens related not Testosterone and he is fairly sure hot flushes is one of them. The other thing coming off Hormone Therapy takes quite awhile he thinks four months for the drug to wash out of your system and the Pituitary to fire up again. In the meantime you have all those side effects on the LHRH Agonist.

Man #5 replied when the hot flushed come he generally feels unwell alongside the stomach ache.

Chairman Bruce in reply to Man #9, he has heard that some people use Estrogens patches to relieve this problem.

Man #9 confirmed he has heard that also.

Chairman Bruce suggested to Man #5 when he sees his new Doctor he might ask about getting on Estrogens patch.

Man #5 McKay added he is due to see his special and may ask him. Bruce agreed.

Man #8 said he has been on continuous Hormone Therapy now for 10 years. He has never had very severe hot flushes but for the first year he had modest hot flushes and ever since then it has been very low and occasionally.

Man #7 mentioned the varying degrees of hot flushes from man to man and because it varies it is hard to give comfort on how long they will suffer from them or how bad they will be.

Man #10 is going to send a link to Man #5 in regard to three drugs that have shown all to be effective in this. If he is not sure after seeing his Doctor about this he can give Man #5 the details to Dr. Yvonne McMaster and this is one of her sub specialties.

Man #5 asked the group if they remember in the last session about the guest speaker casting doubts about taking flax seed oil?

Man #10 also recalled the guest speaker saying this and referred to Dr. Snuffy Meyers - Medical Oncologist has written a book why you shouldn't and also has videos about this if they would like to look it up. He has a link he can share.

Man #5 McKay - asked Man #10 to explain about eating the flax seed. The seed itself can be eaten but the flax seed oil seems to be the problem.

Chairman Bruce added some foods get good press when they shouldn't like almond kernels.

Man #11 asked why Snuffy Meyers is against the oil? (Dr Myers video 24.03.2010 on flaxseed oil and Alpha Linolenic Acid)

Man #10 replied he can send a link of Snuffy Meyers video and that will explain why it is not a good idea.

Man #11 explained how his GP advised him to put chai tea on his cereal to try and get a balance between good and bad cholesterol. He understands it is related to the flax seed but has the chai tea as a whole on his cereal.

Man #6 recently bought 10L of flax seed oil and uses a little...but now he might use it like linseed oil as suggested by Man #7 to oil an old wooden cricket bat. He would like to look into knowing why it is not good for human consumption.

Man #6 asked what is the maximum length of time people have been on the Hormone Therapy before going on to Chemo?

Chairman Bruce added Hormone Suppression Therapy, people can go on it with no interruption and be on it for years and years he doesn't think there is an absolute limit to how useful it has been because people have been on it and died of other causes so you don't really know. It is a variable thing. He cannot give Man #6 an average.

Man #8 has been on it for 9-10 years and he is aware of people who have been on Hormone Therapy for 15 years and then others are only on it for a few months. So it depends on what can be useful and every case is different.

Man #5 McKay asked Man #8 how the treatment has affected his bones?

Man #8 replied his Medical Oncologist lined him up with an Endrocologist once he realised after a year of treatment he was going to be on it for an extensive amount of time and he sees the Endrocologist regularly and gets bone density tests done. When his original results came in he was a little lower in some areas that he should have been but not bad. He takes Vitamin D and Calcium tablets and the Endrocolgist mixes those to get the right sort of result. A few years ago he had three infusions of Bisphosphonate, which is a chemical used to shrink the bone, it has more substantial effect than just the Calcium and Vitamin D. His bone density has basically remained the same. His bone density is pretty good but keeps checking it because if the density gets low you can have breaks. He imagines this would affect the quality of life.

Asked if he does weight and he replies he doesn't.

Asked is no sign of the cancer becoming hormone resistant? Man #8 replied there is plenty of time for that. My original Hormone Treatment which he is still on, is Lucrin, has dropped it down from 5-6 PSA to a minimum of about 0.7 for several years. It gradually started coming back up again so they added Antiandrogen, Casodex which gave some benefit for about a year on top of the Lucrin. More recently I have been on Nilutamide which is another Antiandrogen. This is holding his PSA at the moment at 10 - 11 and has been in the range for the last couple of years now. He explained how he is now going towards the Chemotherapy end. He is interested on getting onto trying some of the newer drugs available before going onto the Chemotherapy. He said the trouble with him getting onto clinical trials is that all his scans are clear.

Man #5 McKay asked how long ago Man #8 was diagnosed?

Man #8 replied 2003. He had a radical May in 2003....September 2003 he started Hormone Therapy.

It has been a long haul and the biggest effect he gets is fatigue. He has gained weight and has been diagnosed with Type 2 Diabetes. They have put him on Metformin and this may be contributing to the anti cancer side of things.

I am 66 now and diagnosed at 57. He said that Hormone Therapy treatment side effects for him have been manageable but it varies from person to person. He is now retired but found his concentration at work was affected.

Man #3 has been on the Hormone Treatment for eight months and said he had the same issue with mental ability. The hot flushes for him are bad but manageable. For him the worst side effect is that he can't think the way he used to and is concerned about long term use because he has only been on the treatment for eight months.

Man #8 replied because of his Gleeson 8 Cancer & his history he needs to be on the Hormone Therapy. Any sex life you had is gone in terms of ability to perform.

Man #3 my cancer is Gleeson 9. He said he is 46 years old which is a big issue for him. He still has a family to support. Man #3 said if he gets on a task he is not achieving his goals in the time he should be. Everything takes longer and is harder for him to do.

Man #8 said he understands that.

Man #3 wonders if the side effects are not only from the Hormone Therapy but also from stress and other things going along with it or is it just the Hormone Therapy? His Oncologist has said that once he has gone off the treatment the side effects will go away and wonders if anyone in the group has gone off the treatment?

Chairman Bruce said the reduction in the hormone level can be associated with depression and mood swings. It can take the shine off your quick thinking.

Man #3 replied he could go down that road of depression quite easily unless he keeps on top of it. He is fully aware of that in his situation. He can manage that situation but the one he can't manage is the sharpness of thought.

Chairman Bruce as long as you're Doctor is aware if you are depressed.

Man #3 replied he is aware of the warning signs as he has dealt with it before.

Chairman Bruce - 11.01am duties of Chairman is finished and he signs off. Meeting Closed

Note: The teleconference line remains open for another hour to enable informal discussions.