Euan Posted August 23, 2012 Share Posted August 23, 2012 Man #1 stated that he recently had a transurethral resection of the prostate (TURP). 40% of the material removed was Gleason 9 and this is 17 years following external beam treatment. Because of his age he and his medical specialists are happy for him to stay on Watchful Waiting. He is having to self catheterise because he is still not fully voiding. His PSA is doubling every 2 years and a bit. This can be calculated using the Sloan Kettering calculator at http://nomograms.mskcc.org/Prostate/PsaDoublingTime.aspx Man #2 reported that he is now on Fentanyl patches and has no pain and this is a big improvement over popping pills all day long. His cancer had not spread to his lungs or soft tissue but he has a few more spots on his ribs. His PSA has dropped from 2.7 to 1.1 in 16 days. He wished that he had seen a palliative care specialist earlier. Man #3 suggested that palliative care should be renamed pain management care. Man #2 said that if he had gone onto the patches 4 years ago those years would have been so much nicer. Man #1 said that the WHO definition states that palliative care is the relief of symptoms in malignant and any other chronic disease and starts the day you have a chronic disease. It is not end of life care as is normally understood in the community. Man #4 said that he had commenced on a phase 3 tasquinimod - placebo trial. He is now hormone refractory and the choice was this trial or chemotherapy. The drug works by stopping the development of new blood vessels (anti-angiogenesis). The drug has quite a few side effects and the first week he felt very tired. Blood clots are a potential problem and he sees his oncologist every 2 weeks and his blood is sent to Singapore for testing. Man #3 said that the phase 2 trial showed that it extended a man’s life by median of 4 months. On the group's website, that is jimjimjimjim.com there is a clinical trials search. Be aware that not all clinical trials will appear in these lists. Dr Olivia Wright started by outlining the topics for discussion based on where you are at with your treatment. There is radiation and fibre, there is keeping your energy up, if you're on ADT you need to maintain your weight with sensible eating. There are also some exciting new developments in that some nutrients may assist to slow down your cancer. There are also ways to tweak the kind of fats to assist with things. If you are going through radiation treatment you can often have problems in the gut such as inflammation or diarrhea or gastro-intestinal issues. Chemotherapy can have a wide range of effects while with radiation sometimes high fibre can irritate. Therefore it may be best keep the fibre down by avoiding grainy things and having more refined types of carbohydrates and keeping the fat content and the spicy foods and the caffeine down. To help keep the weight down hand in hand with diet is physical activity. It is very important that they be together. There are studies going on here at UQ which you may have seen on the television recently. But the main thing I'm going to talk about is fat and then sugar and fruits and vegetables. The type of fat that you eat may influence prostate cancer progression. Omega 3 fats are found in certain nuts and seeds, flax seeds and walnuts are particularly good. You need more of these sorts of fats then the saturated animal fats that you find in dairy foods and meat and a lot of take away foods. The oilier fish, such as salmon, sardines and to a less extent tuna 2 to 4 times per week or more would be good. The sandwich varieties that have other things in them are probably best avoided and generally, the less processing the better. Cold water fish particularly from the northern hemisphere generally have more omega 3s in them. The main message is not to cut fat out of your diet as it is really important to have the useful fats. There is some evidence from animal studies that these omega 3s fats can slow things down a bit as well as helping with weight management. There is a general relationship with inflammation throughout the body which we now know is associated with how the body reacts when we put on weight. Olive oil is another good fat. When cooking with oil make sure you have an oil which does not decompose with heat such as the more refined olive oils, sometimes called light olive oil. Extra virgin is best used cold as it breaks down at cooking temperatures into products which are not good for you. Grape seed oil also rice bran oil are good as they have a high smoke point (this just means that it does not decompose at higher temperatures). Olivia finds that making a dip consisting of olive oil with a little balsamic vinegar is tasty and is preferable to butter or margarine which also contain a lot of salt. In some of the epidemiological studies (these are studies which look at a population food intake) have found that there is an association over time between red meat and higher rates of prostate cancer. There are quite a few new things happening in regards to meat and amino acids, lysine for example, and whether that can seed the prostate. But the main thing we have from human studies is mostly meat that is overcooked or burned and the highly processed meats such as ham, bacon, salami and hot dogs are all bad for you. There are barbecue liners which can help prevent burning. It is important to have meat for your zinc and iron the levels. About 18 g which is roughly half the size of your palm per day remembering to buy lean cuts and remove any obvious fat. In the latest review of the dietary guidelines they introduced a 50/50 recommendation between red and white meat. When asked why they said for sustainability reasons. Once your cancer has metastasised, diet came help you to feel your best but it may not slow your cancer. Man #5 said that Snuffy Myers says that a good diet may not help the cancer but it will likely help the drugs you're on combat the cancer. Olivia said that she is aware of some studies where certain nutrients have been shown to assist the drugs to work better there are a couple of examples of that with lycopene. Man #6 said Snuffy Myers is not against pork he's against cured pork and he is also against flax plus farmed salmon they are fed flax. He has trouble getting chook feed which is free of corn. Man #3 said that corn is very cheap in the United States. In Australia most feed is based on wheat which is much cheaper here. Olivia said that corn oil is rich in the omega 6 but corn the vegetable has many things such as antioxidants which are helpful and a range of other things and would not suggested not eating corn. Man #3 said that he heard that flaxseed is OK but flax seed oil is not. Olivia said that corn oil, safflower oil and also soybean oil are all rich in omega 6. Chicken also has omega 6 content as do some breads. Try to get your omega 3s to 10 for each omega 6 in your diet. The Mediterranean diet is excellent and especially tomatoes because of some other compounds they contain especially lycopene. The majority of the study's have been epidemiological and looking at people's lifestyles. They have a lower risk of developing prostate cancer and there have been some studies of people consuming quite low amounts of lycopene and they have been positive. UQ is about to commence using quite a high amount of lycopene to be looking at gene expression. She strongly suggests introducing some salt reduced tomato paste into your diet each day. You can add boiling water and make a type of soup. Also add a little olive oil and this can help to absorb it. Not everyone absorbs nutrients the same way and this genetic variation is always a challenge. For the study they will be using 2 185g tubs per day of tomato paste which is 100 mg of lycopene. The usual recommendation is at least 30 mg per day. A tub of tomato paste is equivalent to eating 10 or 15 tomatoes. It is fat soluble so eating it with oil will help it to be absorbed. Because of your genetic makeup your response to the fish oil or lycopene can be quite different to others. Man #3 said he has read that that lycopene as a supplement is not as effective as tomato paste and that capsules of fish oil were not as effective from as from fish. Olivia confirmed that she has seen a study that showed that synthetic lycopene had no benefit as compared to taking a whole food such as tomato paste. She also recommends consumption of oily fish and prefers the higher strength capsules. Omega 3s thin the blood so if you are on other blood thinning medications you need to be careful. The oil in bottles is being sold more and more but is quite expensive. Also check that it is from a reputable company. In Australia, the Therapeutic Goods Administration checks that complimentary therapies are perfectly safe whereas other countries including the USA are not so stringent. Man #3 said that at both Woollies and Coles wild caught Canadian salmon is available in tins. Snuffy Myers talks about vitamin D and UQ is are doing some research into vitamin D. They need to do much more work to find how much if any supplementation is required. Another recommendation is to make sure you have cups of tea a rather than coffee. Tea has beneficial compounds especially green tea. Red wine has some good components but in moderation. If you have both red wine and green tea you are doubling their effectiveness. With regard to the issues surrounding sugar, fructose is indeed metabolised in the liver. If we just have our fruit per day we would be getting about 20 g of fructose. The evidence is telling us that over 100 g of fructose per day is when our lipids and triglycerides are affected. If you are on ADT fructose has been linked to worsening insulin resistance at higher levels. Be careful when taking supplements especially when there is a mixture of supplements. Green tea in large amounts some people can get a heart arrhythmia and it also thins the blood and can affect the absorption of foliate. However 2 to 4 cups per day should be fine with no issues. Man #3 said that apricot kernels is one of the well-known myths and has been around for many years. Olivia said that the majority of fruit seeds do contain cyanide so be cautious with them. Almonds contain a variety of minerals, vitamins, calcium and are lower in the omega 6 oils. Man #12 is taking a teaspoon of flax seed oil everyday and asks if he should he cease. Olivia prefers the seeds to the oil. At the moment she is fully occupied with lecturing and research and is not involved in clinics but would be happy to refer him to someone who could help. Man #7 has said that his GP recommended an uncommon seed type to increase his HDL cholesterol. Olivia commented that it is similar to flax seed but would have to look further into it. They did a study at the Wesley a few years back and gave people 8 macadamia nuts per day and found that that increased their good cholesterol. Man #7 said that he was taking several Brazil nuts each day. Olivia suggested he take just two per day for selenium and make the rest macadamias. Man #8 commented that PCFA are pushing ahead with the convenience advertising the object is to get more people attending support groups. The pilot program runs from mid August to mid December. Movember are committing $6 million over 3 years for the survivorship program. The feeling he has received by listening to the talk on this teleconference is that you are not alone and there is a breaking down of isolation. Even if you're not getting the world's greatest information you are talking to other men going through the same issues and this is quite a benefit. Man #7’s feeling is that these benefits should be notified to a much larger audience. Man #9 believes that men tend to be more task orientated and focus more on information than do women. Man #10 had a bad experience with the support group he first went to where a couple of the members were quite negative. In contrast he finds the advanced group very positive. Man #8 is asking what do we need to do to replicate some other things that this advanced group is already doing? How do we let a much broader number of men know there is this sort service available? Man #10 described how he was told by his urologist that he did do not have to settle his affairs just yet. I will see you latter when we start on the injections. And that was it. He was given nothing and only got information when he attended his first support group meeting. He was given a large package of information which he found extremely helpful and armed with the knowledge from that may well have changed his treatment. He found out about the multi-disciplinary team at the PA only because of a chance meeting at a support group and found them extremely useful. He thought that urologists would be best placed to infirm men of support groups. Man #11 thought that the medical specialists were a bit concerned about the quality of information their patients might receive from support groups. He thought that the specialist nurses were more receptive and often see men in groups and can pass the information on about support groups. Man #9 agreed that the medical profession are generally too pushed for time to discuss support groups. He thought that the planned advertising might be the way to go. Man #8 said that 33% of women attend breast cancer support groups but only 5% of men attend prostate cancer groups. Man #10 said he knew of a man who had cancer and refused to discuss it. He would not even discuss the future and died with his wife not knowing any of his wishes. Man #3 mentioned that for those women who wish to come to a support group there is a Brisbane partners only meeting. He also mentioned that almost all members of the advanced group have come from personal contact or a recommendation from a Queensland support group. Man #3 indicated that the new website is now working well and we are ready to expand. Perhaps an email to the other chapters should be organised. Man #8 said the that he had the email addresses or all groups in Australia but he would need to get approval before using the list. Man #3 commented that typically only half the men who joined the teleconference actually speak because of this we can take more men. It is also to be expected that they will come in and out as topics interest them just like a normal support group. We can also obviously split into more than one teleconference. Man #11 mentioned that the first article on the advanced group only appeared in the July edition of the QPCN. We should consider entering an article in the quarterly Prostate Cancer News and thus reach a much bigger audience. Man #3 has found that referring people to the web site or giving them your phone no has not worked. You must get their telephone number so that one of our members can call them. Link to comment Share on other sites More sharing options...
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