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  2. Dr says wait before starting ADT

    Hi Patrick, For nearly all of my (also) 70 yrs I believed exactly as you do. Fat was the cause of heart disease and cancer. I can show you graphs to "prove" it! Unfortunately, my healthy diet did not keep me safe, however I've long been a listener to The Science Show on ABC RN and heard a talk by Prof Paul Davies (an astrophysicist who was head hunted to lead a multidisciplinary anti-cancer team) and he said that a ketogenic diet appeared to hold a lot of promise. I'd never heard of it and, being a high-fat diet, was absolutely the LAST thing I wanted to do. But when the PSA had risen soon after surgery and was rising again soon after radiation, I decided to look into it more carefully—and the SCIENCE made sense to a retired engineer. I was much impressed by Paul Davies basic explanation of what cancer is based on the fact our DNA has pyramid structure with growth control added on top of pyramid, and plain growth on base, which all living things began with. So cells just grew and were only limited by available nutrients, so 400 million years ago, our ancestors were unintelligent "clumps of brown junk" growing on rocks in wet places, and giving off O2 which was a byproduct. O2 levels grew and grew, and over countless years some brown blobs grew by eating other brown blobs, and some utilised 02 because lots of it was around, and it likes to combine with many things; oxidation process is extremely common, and we are lucky that photosynthesis happens with plants absorbing CO2, giving back O2. But when controls over growth breakdown in our cells, you get brown blobs of junk - cancer - and calorie restriction probably slows down growth. So ketotonic whatever, serious calorie reduction, ie, partial starvation will certainly prolong life but it may one where you feel so tired and depressed that life has no quality. 1. Every carb is converted to glucose (some much more quickly than others) But without carbs, your energy must come from protein and fats, and the body will break down muscle with body fat to get blood sugar levels somewhere near what it wants. There's always going to be glucose. 2. Cancer loves glucose. Your latest PsMa scan only works because cancer cells soak up vastly (I think it's 17 times) more glucose than normal cells, even when it's the radioactive sugar you were injected with. I emailed a research guy at ANU who was investigating glucose blocking and he said its almost impossible to achieve because so many things can be converted to glucose. Prostate cancer needs hardly any glucose, which is why I've had it for so long yet I may be years away from it killing me. Just a whiff of sugar is enough, and a whiff of testosterone, and if it cannot get testosterone, it makes its own, and so Pca has this horrible reputation for being incurable unless **ALL** prostate cells are removed from the body very early, maybe when Psa moves from 1.0 to 2.0. The researcher told me not to hold my breath waiting for a glucose blocker medicine to become cancer therapy. This was 3 years ago. I am not sure radioactive sugar in solution was injected for PsMa test. Sure, a ligand chemical was used to tie Gallium in solution to where Pda is being made, but I am not aware Pca soaks up 17 times more glucose than normal cells. Bitter almonds kernels with high amygdalin were ground up and amygdalin extracted to make Leatrile which was used in 1950s as therapy. Big doses were injected, 1,000mg at a time, about what is in 1Kg of apricot kernels. The clinics were closed, exposed as frauds, and ppl hung on to belief, and ppll said if you eat 30 bitter almonds a day you'd get 20mg amygdalin which would run around your blood circulation and be absorbed by any cells wanting glucose, including cancer, and the cyanide molecule in amygdalin would slowly kill cancer. I did this over a long time but it made ZERO difference to Psa just another pile of BS. 3. A glucose spike causes an insulin spike. 4. An insulin spike "pushes" glucose into cells, especially cancer cells that are primed to take advantage of the feast. Insulin also triggers production of hormones (such as IGF-1) that promote tumor growth as well as TAF (tumor angiogenesis factor) hormones that stimulate growth of the tumor's blood supply (angiogenesis). It is impossible to not use insulin. Diabetics who cannot make insulin need to shoot up with insulin. I've known some who just can't adapt to the discipline, they are damn well gonna keep eating sugary shit no matter what, and booze too much, and laze about and do SFA. So by cutting down the carbs and eating a high-fat diet you stop force feeding the tumors and give any other treatment it's best chance. No, you won't have low blood sugar as the body can make what it needs (gluconucleogenesis) for those parts that need glucose. But most of our system can work perfectly well (or even better) fuelled by ketones made by the liver from fatty acids. But don't take my word for it. Watch this EXCELLENT talk by Dr Colin Champ. He's a radiation oncologist treating mainly breast cancer patients and is interested in nutrition. Note that his talk is titled AUGMENTING Cancer Therapy with Diet. I may have extended the time I have to live by becoming virtually antisocial in my eating habits. It is probable I'd have to starve myself to a skeleton before I'd make much difference to whatever my cancer is going to do. Most ppl in USA are too big, way too lazy, and not one is ever going to eat whale blubber everyday in freezing conditions like eskimos or live like Indians or like our own indigenous tribes where being horribly hungry most days was normal, and being riddled with parasites, and dying by 50, often 20 years before cancer shows up. the experts of the past made all these studies of primitive ppl before all these old ways of life were corrupted by Arsole Food Products P/L began to sell their sugary crap. Sugar is now killing many Oz indigenous ppl because they get addicted, its cheap, profits are made by shops not heavily regulated, and if they were regulated, there would be no shops, so outback communities would starve, but maybe live slightly longer. All our own local supermarkets should be heavily regulated, and if they were, they'd go broke overnight. Nobody can be perfect about diet, and even when ppl are perfect eaters, and adopt the diet which is best to make cancer slow down and make chemo or RT more effective, it may not work for all. And ppl are wanting to live so long, and they'd prefer to not die at all, but our DNA has other ideas, no matter what we want, and so death comes and its unavoidable. That young dude Colin Champ should be interviewed when he's 60, and just been diagnosed with Pca. See what he says then. Did you listen to Dr Mark Moyad recently? One of the world's leaders in prostate cancer treatment, he said he was "excited" by the potential of a keto diet to "help suppress tumor growth". WOW! The fact that he's excited makes me excited :=) I don't get excited unless somebody proves it really works in the real world and our life is not made into a living hell to achieve some "potential" benefit, rather than an actual benefit. Its common sense that if you starve yourself, sure, you starve the tumor, and when you stop starving, the tumor continues to grow a bit faster than it did while you starved. Most "carbs" in US foods are processed foods without fibre and high in added fructose and other added sugars and sure enough many US ppl and UK and here need the sugar hit, and sure, high insulin peak, and maybe it surely speeds up some cancers. But not all. There are carbs which have low glycaemic index where they take ages to break down, brown rice, rolled oats, stone ground wholemeal grains, so that their intake does not cause huge insulin spike. Colin didn't mention these, and just what sort of high fats are best? I would guess if I eat more added olive oil to my foods I raise calories, so could reduce my intake of complex carbs with low GI. I would not do myself any harm by increasing oil and reducing my carbs. Colin quoted his grandad at 96 who said he was able to live long by keeping away from blokes like Colin. Was he joking? just being a grumpy old bugger who hates young ppl? My mum lived to 98 with no cancers but ate every wrong food she could. She never was obese, just 20Kg too heavy between age 60 and 90. After 90, she just lost interest in food, her taste and smell sense faded down, like so many things. It's great that you can, "be cheerful even when dying slowly", but I strongly suspect that it might be possible for you to die even more slowly—you're certainly bloody fitter than any old fart has a right to be!. And your current dietary regime shows you are the right type to make the change if convinced of the science. In fact Colin Champ points out that he can suggest almost-lethal radiation and patients will readily accept it. But if he suggests a change to their diet, they will run to get away. Very best wishes, Peter PS. Please note that at NO TIME did I claim that a diet will lower your PSA. But I would like to put out there what I've done and what the result has been. PPS. I'm happy to help if anyone wants to contact me directly. I am half convinced by the science and I feel unqualified to criticise Colin's efforts, but I also like to feel well and be able to cycle and mow grass and clip my infernal hedge. I really don't think I'd feel too well if I cut out my complex carbs with fibre and had a cup of olive oil instead. I also like 7 small apples. This is so much better than a litre of Coca Cola, and I don't need wine, which should only be drunk with good company with good food that is not extreme food. I don't have a social life, a wife, a dog, sons, daughters, and I don't believe family life helps cancer survival one little bit. I have witnessed so much dysfunctional family life with relatives causing each other so much pain, displeasure, dis-harmony, and plain old angst that I don't regret failing dismally with the many women I met, all hell bent on pursuing such bad habits that I ended up feeling like Colin's grandad, glad to not have lived with so many ppl I could think of right now :-). Maybe Colin's grandad just wasn't ever loved enough. I should not say that's how I feel sometimes, but who ever gets enough love? Most of my peer group ate too much, drank too much, smoked too much, and many had terrible times with kids and wives - the Great Un-admitted Story which supports the divorce statistics and treatments for preventable disease etc. So many men and so few women ever raised a sweat, and when I ride around the ACT, I might go a fortnight without passing anyone else near my age. So many are now heading for more co-morbidities than I am saddled with. At present, I can only go along with what treatments are available, abiraterone, and if it doesn't work, then chemo, and that won't work fully, so maybe I qualify for Lutetium, and that has dreadful side effects, and so its all uncertain, and there's no real magic yet that kills the cancer without degrading life. Just what is being positive? I am a realist, and I know I have to die, and probably from Pca. Does being a realist make me a pessimist? Is the optimist the one who takes the Egyptian Solution? ie, standing in De Nile. Everything is going to be alright they say. No it won't be, OK. To stop myself going insane, I just hop on me bike and get going, and I don't much care what the world does. Away from the bike, I quite like ABC Classic FM, and daily lunch at a café, and I find Outlander and The Handmaids Tale and Glitch to be good TV. It is awkward to converse in typing, but we do get to say what we mean, and mean what we say with these letters, its what emails are, and I often prefer emails to telephone calls, and I am patrick@turneraudio.com.au I found I didn't fit into Facebook, and if ppl want to communicate, what is wrong with being themselves, and one to one? I don't mind being myself, there's nothing to hide, and since 2000 when I learnt to use a PC I have never gained an enemy, nor any hacking of my website, and I have dodged most spam and my BS detectors must be working well enough. The Best forum sites were in Usenet which unfortunately became saturated with spammers, flamers, psychopaths, trols, and most ppl were too scarred when criticised, so now the web isn't what it was, while ppl have often stayed reluctant as ever to talk to other ppl. Probably, what ppl want as much as life itself is meaningful connection, but I might say wonderment would not go astray. Patrick Turner.
  3. Dr says wait before starting ADT

    Hi Patrick, For nearly all of my (also) 70 yrs I believed exactly as you do. Fat was the cause of heart disease and cancer. I can show you graphs to "prove" it! Unfortunately, my healthy diet did not keep me safe, however I've long been a listener to The Science Show on ABC RN and heard a talk by Prof Paul Davies (an astrophysicist who was head hunted to lead a multidisciplinary anti-cancer team) and he said that a ketogenic diet appeared to hold a lot of promise. I'd never heard of it and, being a high-fat diet, was absolutely the LAST thing I wanted to do. But when the PSA had risen soon after surgery and was rising again soon after radiation, I decided to look into it more carefully—and the SCIENCE made sense to a retired engineer. 1. Every carb is converted to glucose (some much more quickly than others) 2. Cancer loves glucose. Your latest PsMa scan only works because cancer cells soak up vastly (I think it's 17 times) more glucose than normal cells, even when it's the radioactive sugar you were injected with. 3. A glucose spike causes an insulin spike. 4. An insulin spike "pushes" glucose into cells, especially cancer cells that are primed to take advantage of the feast. Insulin also triggers production of hormones (such as IGF-1) that promote tumor growth as well as TAF (tumor angiogenesis factor) hormones that stimulate growth of the tumor's blood supply (angiogenesis). So by cutting down the carbs and eating a high-fat diet you stop force feeding the tumors and give any other treatment it's best chance. No, you won't have low blood sugar as the body can make what it needs (gluconucleogenesis) for those parts that need glucose. But most of our system can work perfectly well (or even better) fuelled by ketones made by the liver from fatty acids. But don't take my word for it. Watch this EXCELLENT talk by Dr Colin Champ. He's a radiation oncologist treating mainly breast cancer patients and is interested in nutrition. Note that his talk is titled AUGMENTING Cancer Therapy with Diet. Did you listen to Dr Mark Moyad recently? One of the world's leaders in prostate cancer treatment, he said he was "excited" by the potential of a keto diet to "help suppress tumor growth". WOW! The fact that he's excited makes me excited :=) It's great that you can, "be cheerful even when dying slowly", but I strongly suspect that it might be possible for you to die even more slowly—you're certainly bloody fitter than any old fart has a right to be!. And your current dietary regime shows you are the right type to make the change if convinced of the science. In fact Colin Champ points out that he can suggest almost-lethal radiation and patients will readily accept it. But if he suggests a change to their diet, they will run to get away. Very best wishes Peter PS. Please note that at NO TIME did I claim that a diet will lower your PSA. But I would like to put out there what I've done and what the result has been. PPS. I'm happy to help if anyone wants to contact me directly.
  4. Dr says wait before starting ADT

    Nicely put, Patrick! We're all heading in the same direction: our lives WILL end somehow, sometime and somewhere. It's inspiring to read your philosophy, which boils down to 'stay as fit and healthy as the hand you've been dealt allows, live in the present, and soak up all that makes life enjoyable, for whatever time you may have. Cheers, Alan
  5. Dr says wait before starting ADT

    I am always wary of anyone who says diet can lower Psa. Fancy words like Ketogenic don't much help me because there is no list of what is safe to eat, to the exclusion of all other things. From what little I know, Pca is one of the "hard" cancers because grows into hard lumps and mostly grows slowly because it does not take much sugar from the bloodstream. Sever dieting to eliminate sugar does not much reduce sugar levels in blood. The keenest vegan who is skinny as a broom handle and who knows sugar is poison and that there's little he can buy at Big Supermarket will have an average blood sugar level which would easily provide enough nourishment for 10 times the average size of total prostate cancer tumors. I have been on a good diet without added sugar, wine, chocolate, and 1,001 things that most ppl don't like to admit they eat. I am so fanatical it makes me a weirdo, and at age 70, I ride a bike 240km a week, regular as clockwork. My cancer probably began in 2004. But it was a Gleason 9 by 2009, Psa only 5.0, and back then DRE showed no hard lumps in PG, and pissing often and not having any ejaculate didn't begin until 2008, the year before diagnosis. One GP foolishly said in 2008, "You're too healthy to have cancer", and I told him I was waiting for my turn for it to happen, because it killed my father, a sister, and affected another sister who still survives, and killed a few friends of mine, and most of my mother's friends. I am quite addicted to green and uncooked vegetables. I gave up all meats years ago although I have a few eggs, and 200gms of fish a week. Its close the Nathan Pritikin's diet, my energy is from 10% fat, ( olive oil only ),10% protein, 80% complex carbs such as ground almonds boiled with quinoa. I see what others eat, and its about twice the calories I eat. Doctors are very pleased to seem me slim and dressed in lycra, resting HR 50, BMI now 24, and blood tests all normal except for Psa. But my oncologist saw my latest PsMa gallium68 scan and said "This is a HORRIBLE scan", and he was more upset than I was, because he thought I was winning, but no, I ain't winning at all, I'm riddled with Pca. It is naïve to ever think you can beat Pca, even when Psa numbers make it look like you have. I've known many fellows whose Psa went very low, then bounced right back up. Anyway, I have cycled 130km so far this week, maybe 40km today, 70km Sunday and I have a nice spring and summer to look forward to and I do not need to change my lifestyle one bit, unless the bone mets get painful. I've lost count of ppl I have known who tried to diet but failed to adopt a different way of life which could be argued to be anti-social. All had woefully low will power, they had no control over their urge to consume and they remained slightly or much overweight, they all could never ride a bike with me, and they all spent too much money on crap. I doubt my frugality has made much difference my Pca progress which probably will kill me. During my times in hospitals getting radiated or other treatments, I saw a wide variety of ppl of all ages, sizes, and conditions, and only a handful were cheerful when I spoke to them; the most cheerful was a guy who worked in a palliative care place, and he got Pca. I often say g'day to all ppl I meet, and quite a few just ignore me, or demonstrate they are deeply depressed. But a minority would ignore their damn mobile phones and find themselves glad to engage in conversation. There's a large number of ppl unable to talk to anyone, with many suffering PTSD from life. I am obviously not one. But I find I can be cheerful even when dying slowly. I'm busy writing a website, cycling, and stopping my house looking like its unoccupied, and one day I'll just wave 'bye. Soon, I'll have a vego sandwich and a pot of green tea for lunch before the 40km ride. Breakfast was a pot of green tea and 4 x 250mg abiraterone tablets at 8am. Its now time for an apple. I'm now 2Kg above the 81Kg I was at 30, and I really should be slightly less because muscle mass shrinks with age, and the body fat % should remain constant, maybe 15%. But I did go to 102Kg at age 57, from 82Kg at 45, and that's a daily gain of only 5 grams, and to haul myself back to betterment I needed to make drastic and permanent change to my life. I began my second inclusion of cycling in 2006, and I lost 18Kg in 6 months and never put it back on. I figured I've ridden about 120,000km in 11 years, with most of the time being chemically castrated with ADT. Hardly anyone overtakes me on a bicycle, and when a younger one does, I may ask "what took you so long?" :-) Keep well, which I know is difficult because life is a temporary arrangement ;-), Patrick Turner.
  6. Hmm, The Reluctant Brotherhood activities....... when I tried to watch this, I had a mild visual failure attack and overwhelming thought I could be doing something else. I myself admit I am a Reluctant Member of the species 'homo rectus' which has so far spread far and wide across the planet, and I believe the scientist who discovered the species was right when he said " This species is getting about tryna wreck tha joint ". I began at about age 20 realizing that so many erections of belief and ideas made it very difficult for us all in the short term and long term. I hesitate to think what it might be like in 3017. I often think that as soon as someone invents dirt cheap electricity or dirt cheap anything else, say houses, then blokes will just use much more electricity and buy 50 houses when just one small one is all he needs. We'll make sure we'll gather more junk around us, and make the mistake yet again that an electric Maserati will make us happy. One small step for a man, one giant leap backwards for the future. I am quite happy with a bicycle. It seems to minimize my "co-morbidities" to the point where I am extremely healthy while riddled with incurable cancer. Keep well, Patrick Turner.
  7. Nev Black (Toowoomba, Queensland) and Peter Kafka (Maui, Hawaii) help inventor John Teisberg (St Paul, Minnesota) to display the workings of Man Junk at the recent PCRI annual Prostate Cancer Patient Conference in Los Angeles. Amongst his other achievements, John started the Reluctant Brotherhood, which has morphed into Answer Cancer.
  8. Agenda Friday 22 September 2017 You must dial in - we do NOT dial you. Landline - Anywhere in Australia - 25 cents Phone numbers only in email. If this is a problem, contact Jim. Apologies From Doug Meiklejohn preparing for daughter's wedding. Late starters Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in - probably later, perhaps right now if that suits. Roundtable - new stories, updates, questions Any man who wishes is welcome to contribute here. Formal end The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat. Informal chat Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say. Disclaimer This Community does not give medical advice. No members are authorised to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment. Time 9:30am - 11:00am Eastern Standard Time (Queensland) The formal phone-in meeting ends after 90 minutes. The lines are kept open for up to an hour after that for members to informally chat. Daylight savings times Brisbane 9:30am Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am Perth 7:30am Winter times Brisbane 9:30am Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am Perth 7:30am Daylight saving ends first Sunday in April Daylight saving starts first Sunday in October Mobile phone warning The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Group or with PCFA. They are between you and your phone provider (Optus, Telstra, Virgin, Vodafone, etc). If you dial one of the capital city numbers given above from a mobile phone, the cost to you will be the cost on your mobile phone plan. If your plan gives you free, or low cost local calls, and you are in one of these cities, it should be free, or a local call. If your plan gives you free, or local cost national calls that should work too. Be sure - call your provider, give the number you might be calling, and check the cost for you to call that number. Speaking time We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond. Special Guest Speakers are invited to speak for 10-15 minutes, then field questions. Guidelines No noise House - radio, TV, computer, pets, other phones, conversation Yourself - mute button, or mouthpiece away from mouth Phone - call waiting off (#43#), Mute button or hang up to leave the room. No mute button? ##4 to mute, ##5 to unmute. Cordless phone - don't carry, put on folded handkerchief to limit reverberation Other calls - Please do NOT use call waiting or another line on the same phone to take another call - members around Australia are left listening to your 'hold' music until you return. Speaker phone Please do NOT use a speaker phone, unless you are very good at keeping it Mute, and at lifting and using the hand piece when you wish to join in the conversation. Mobile phone You will need enough charge for the length of the call, or take the call with your charger plugged in. Speaking Speak clearly into mouthpiece in ordinary voice. Say who you are when signing in, and each time you speak. Listen for the gavel. The Chair may need to interrupt. It's a meeting of 20 people, not a simple phone conversation. If you are not one of the two people in the particular conversation at the time, keep your mute button down and let others contribute. Help the secretary by later emailing details for the minutes. Restarting You may hang up and sign in again as many times as necessary. Sometimes we may have to restart the meeting - dial in again. With everyone calling at once you may need to try more than once. Future phone-in support group meetings Fourth Friday of each month, except: January (one week late for Australia Day), March (one week early for Easter), and December (one week early for Christmas) Phone-in support group meeting dates 2017 September 22 (not the last Friday) October 27 November 24 December 15 (one week early, not the fourth Friday) Changes or questions If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com. This message has been send to you because you are a member of the Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
  9. Dr says wait before starting ADT

    Hi Mike, It's been shown repeatedly that the people with cancer who do best are the ones who take an active role in their treatment rather than just hopping on the medical conveyor, hoping to come out the other end. You're off to a good start getting some expert first hand advice from men of JIMJIMJIMJIM who have been there and done that. And there are two ways that you can really help yourself: exercise and diet. Now from what you've said, you seem to have exercise pretty well sorted. I'd be looking at what might be possible with diet. On 25th Aug, Jim arranged a phone-in with a renowned expert, Dr Mark Moyad. Really worth while and, having just joined, you probably missed it, but you can catch up here: http://forums.jimjimjimjim.com/topic/1832-mark-moyad-the-youtube-video-from-yesterday/ During Mark's presentation he says "One other thing ...I'm excited about is the possibility of other types of diet that men can use... A Ketogenic Diet helps suppress appetite and people feel good because they can eat a lot of these foods that they thought they had to stay away from and is another option, that is getting countless clinical trials right now, to not only lose weight with prostate cancer but to potentially rob the tumor of any different types of sugars that it could utilize for growth. Now, ... I think there's a lot of diet options... in 2017, the buzz word is, and will continue to be for the next year or two, will be a high-fat diet to see if you can lose weight and/or suppress tumor growth." (The emphasis is mine.) Bearing in mind that clinical trials are nearly always funded by big pharma with the hope of a drug to sell at the end, I'm amazed that so much money is being spent. There is no possibility of selling anything. No way to recoup the money. Just improved public health. In my own case, a rising PSA shortly after surgery meant radiotherapy. That was good but, a few months later, it was rising again. The advice was check it again in 3 months but I decided it was time to start doing more for myself. I can't prove the diet made a difference but PSA was falling on the next test and undetectable 6 months later. It has remained undetectable since (18 months). The principles are simple. Cancer loves sugar. Carbohydrates get converted to glucose which triggers insulin production (along with other hormones) that force-feeds the cancer. So minimize the carbs, minimize the insulin production and stop force-feeding the cancer. Stress the tumor and give whatever treatment you're having its very best chance. It really is a no-brainer! And a keto diet has some very special features; 1. It is safe. Used in hundreds of US hospitals for childhood epilepsy (Altho there are precautions you need to look at) 2. You don't have to wait years for the results of the trials. 3. It can only help any other treatment. 4. It's much easier to live with than I ever would have imagined (thanks to my wife's cooking). 5. There is no financial outlay. From my perspective, there is no down side. The worst possible result from the clinical trials would be that it made no difference. If you have any interest at all, don't hesitate to get in touch. Best wishes Peter
  10. URO Today Newsletter has a number of links in their Prostate Cancer Daily Newsletter. EAU 17 Conference: The Future of Molecular and Functional Imaging is one of those items. The link below is maybe an insight to the future of Imaging . https://www.urotoday.com/recent-abstracts/urologic-oncology/prostate-cancer/98678-eau-pca-17-the-future-of-molecular-and-functional-imaging.html
  11. Dr says wait before starting ADT

    Report post I had my prostate removed last year had radiation, my psa is 2.0 I had a bone scan that is negative and an MRI that showed one lymph nod that was positive. My doctor suggest to have that removed which I did a few months ago. My psa is still at 2.0 my doctor has suggested to wait and see to not rush into hormone treatment. Would like any feed back if anyone else has had a similar problem I'm a healthy man of 74 runner for over 40yrs still skydive and still am working in my business as a collision repairman. There is no history of cancer that I know of in my family.Thank you for your time.Mike You say an MRI scan showed one metastasis in a lymph node. My guess is that where there is one met, there may be dozens, or hundreds but they are too small to be detected my MRI, or what I have been told is now best, the PsMa CT-PET Gallium-68 scan. Unfortunately, cancer can make an unwanted visit regardless of having no history in a family and despite just how healthily and actively we live our lives. Maybe the only way to be really sure Pca won't get a man is for him to have it removed well before Psa moves up to more than twice normal, and at age 55, so that full nerve sparing can be done so your sex life and urination should remain undisturbed after a full recovery. However, it is always possible surgeons will leave a few prostate cells behind, and if they have DNA that could ever become cancer in future then there still is a risk that they will become cancer and if that happens then it may take slightly longer for the Pca to become a damn monster that pursues a man to the grave. But at 70, I know I have certainty is that I'll die some day. I was diagnosed with a Gleason 9 after Psa only went to 5, and it was inoperable. I had EBRT and ADT for 2 years, Psa < 0.1, then I paused the ADT and Psa shot up to 8.0 in 6 months, and maybe it spread to many places. I re-started ADT, and got 4 more years of suppression, then Psa went up without pause to ADT. I had 31Grey of IMRT to PG 15 mths ago at Epworth. I began Cosadex daily, and that worked for only 6 months, Psa went up again. But PsMa scan last June showed about 15 mets in lymph nodes and bones, and Cosadex was stopped because doc said that when Cosadex fails, it helps Pca grow. The bone mets excluded me from being recommended for BAT, an easy treat where after being on ADT for 6 years, I take 400mg Testosterone shot once a month and have Psa test just before the shots. This is all explained online, but 1 x 400ml testo is only what a body builder might use twice a week for years to grow muscle ( to make himself look stupid ). BAT is being trialled in USA as John Hopkins Hospital. Anyway, now I have been on Zytiga, ie abiraterone for last month; it is a more powerful form of ADT and I am staying on monthly shots of Lucrin. The abiraterone might give suppression for a couple of years, if it works at all. During last Feb when Psa was only 0.5, I had both knee joints replaced because of bad genetics. Everyone knew it was likely I was riddled with cancer, but docs were happy to do it. But now I can walk without pain, and continue cycling 220km average per week at average speed 24kph. I have no idea if this slows my cancer down, but most days I feel 20, and I overtake many who are 30 years younger. So I have no symptoms, but just have the effects of chemical castration and radiation since 2010. The effects of these completely mutilated my sexual abilities, but I am quite continent and bowel function is fine, sense of humour and gregarious nature is untouched, so most days I am quite happy, and I have resting HR of 50, BMI < 25, docs are delighted to see me arrive to have a chat dressed in lycra. I thought I might qualify for Lutetium177 theranostic treatment, but it seems I just ain't crook enough and it may be years until I am crook enough. Peter Mac Hospital in Melbourne trialled Lu177 last year and announced results recently and overall it seems good but they are doing another trial later this year. But a condition to be accepted to trial is that you must be on chemotherapy when all else has begun to fail, and only chemo remains, so if abiraterone gets my Psa low, and no chemo is needed, then I won't be allowed to be in the trial. There are hundreds of men in far worse condition than I am. So, when one hears about some new treatment like Lu177, be wary, because the trial only finished 9 months ago and nobody knows yet how patients will be in say another 9 months, or 2 years. Lu177 is easy peasy to treat, just sit in a chair and take clear liquid injected to a vein. But side effects are dry mouth because saliva glands are badly affected, maybe dry eyes as well, and what's the use of me having Lu177 soon if it does not give me remission, and I need something else in 2 year's time? It may be better to just let abiraterone work for 2 years without any side effects and then have Lu177, and hopefully in 2 years time the Lu177 will have improved, or been changed to something better, and sure, all of us are impatient, but the reality is that we must live and die as developments and treatment approvals and allow. Maybe targeted chemo will prove effective, and it is now not uncommon to hear reports of DNA testing of cancer cells and then use of the best chemo most likely to work. The other thing to remember that not all Pca cells can be suppressed with ADT, and certainly not all Pca mets, and for a few unlucky fellows, the PsMa tests or Lu177 does not work at all much because nothing can SEE where all the Pca and mets are. The salvation radiation I had at Epworth last year seems to have reduced my Pca in PG, which is now a fried mess, and spread to nearby organs has not happened, but all these many mets have sprung up like musrooms, and they will kill me if they are not dealt with and the only way is by systemic treatment, no more EBRT for me. I may have to fight for next 10years, but before psMa test appeared, it was said that if a CT scan spotted bone cancer, you had 95% chance of death within 5 years, with last year being bleedin awful. PsMa tests are detecting smaller mets, maybe I have 7+ years. But I will cycle until I just cannot. Life is good, even though its a reduced life. There are so many far worse off, who suffer more, so be grateful. Regards to all, Patrick Turner.
  12. Dr says wait before starting ADT

    Oops - thanks for picking up my error, Sisira. I meant to say six rounds, not six months, Michael. Alan
  13. Dr says wait before starting ADT

    I agree with Alan. What he really means I think should be ADT combined with 6 rounds of chemotherapy and not 6 months. Sisira
  14. Dr says wait before starting ADT

    G'day Michael, Could you indicate the last couple of PSA values and dates prior to your RP, and the RP hisopathology reported Gleason score, percentage of tissue positive for PCa, positive / negative capsular margins and any excised lymph nodes that were positive for PCa ? These (and future Gallium or PET/CT imaging of at least your pelvis and abdomen) are important data that point to how aggressive current and future treatment might need to be. Your subsequent MRI-positive node indicates metastasis - quite possibly early stage, but the extent of which is hard to guess at without the above info. Based on recent practice-changing trials, the trend seems to be to hit such cases early and hard - including ADT combined with 6 months of chemotherapy while the patient is fit and early-stage (i.e. 'not too mutated'). These points (which are comments on your post, not medical treatment advice) could be the focus of an early chat with your urologist - AND with a medical oncologist. Stay in touch - and best wishes, Alan
  15. It’s not too late to register for Prostate Cancer Foundation of Australia (PCFA) Ask The Experts Webcast and find out what you need to know about prostate cancer. Thank you to those who have already registered, we’ve had an overwhelming response and some incredible questions. WHEN Wednesday 20 Sept 2017 7:00pm – 8:00pm (AEST) WHERE Online – join via computer, smart phone and tablet. Registration is essential. Our expert panel of health professionals including: a radiation oncologist, urologist, prostate cancer specialist nurse and a general practitioner will cover: Risk factors and diagnosis Navigating different options after a diagnosis Treatment and management of side effects Support available to men and their families Questions from the audience To register and for further information go to www.pcfa.org.au/asktheexperts Share with others who may wish to attend. Forward this email to a friend Not available to join us live? Stay connected and view webcast post recording viaonlinecommunity.pcfa.org.au
  16. It’s not too late to register for Prostate Cancer Foundation of Australia (PCFA) Ask The Experts Webcast and find out what you need to know about prostate cancer. Thank you to those who have already registered, we’ve had an overwhelming response and some incredible questions. WHEN Wednesday 20 Sept 2017 7:00pm – 8:00pm (AEST) WHERE Online – join via computer, smart phone and tablet. Registration is essential. Our expert panel of health professionals including: a radiation oncologist, urologist, prostate cancer specialist nurse and a general practitioner will cover: Risk factors and diagnosis Navigating different options after a diagnosis Treatment and management of side effects Support available to men and their families Questions from the audience To register and for further information go to www.pcfa.org.au/asktheexperts Share with others who may wish to attend. Forward this email to a friend Not available to join us live? Stay connected and view webcast post recording viaonlinecommunity.pcfa.org.au
  17. Dr says wait before starting ADT

    I had my prostate removed last year had radiation, my psa is 2.0 I had a bone scan that is negative and an MRI that showed one lymph nod that was positive. My doctor suggest to have that removed which I did a few months ago. My psa is still at 2.0 my doctor has suggested to wait and see to not rush into hormone treatment. Would like any feed back if anyone else has had a similar problem I'm a healthy man of 74 runner for over 40yrs still skydive and still am working in my business as a collision repairman. There is no history of cancer that I know of in my family.Thank you for your time.Mike
  18. Earlier
  19. Can we please set up a meeting with Gail Wiseman of Astellas ASAP to try to find a way forward on this. Some patients like me are getting huge benefits on clinical trial with pre chemo Enzalutamide. Denying this benefit to those in our wider community who could also benefit is criminal in my view. If we can do it with Xofigo we can do it with pre chemo Enzalutamide. Regards Tony
  20. Hi Jim Thanks for your prompt response I am working through the pros and cons. One thought is that Xtandi is a more advanced approach in that it working on the receptors in Pca rather than androgen deprivation. But concerns about fatigue & seizures are an issue. Hypertension has been a problem for me in the past but now is well controlled with meds. It is a dilemma for me but I guess I will get there. Chalkie
  21. Chalkie asks: I am now having to choose between Zytiga and Xtandi. Is there a forum for this? Any suggestions? Jim Marshall (not a doctor) said ... A recent trial for men with metastatic prostate cancer who were no longer responding to ADT alone (mCRPC) showed similar outcomes on both drugs. So, it appears your doctor could recommend either, unless they are worried about how a particular side effect may affect you personally: If you have a health condition that could be made worse by possible seizure or fatigue, your doctor may steer away from Xtandi. If you have a health condition that could be made worse by possible by increased blood pressure, low potassium, or increased liver enzymes, your doctor may steer away from Zytiga. ... end Jim A link to an article on this can be found here: Abiraterone and Enzalutamide equivalent as first-line therapy in metastatic hormone therapy- resistant prostate cancer
  22. Anandron (nilutimide)

    Thanks Allan, your comments have given me confidence in looking to the future. Now almost a year on I have finished 7 seven infusions of chemo - which I handled very well - in that my life didn't change much. Side effects were the loss of hair and finger nails gave me some grief with all of them becoming septic. But they are OK now and my hair is coming back. Peripheral neuropathy continues to be an issue. PSA came down from 40+ to plateau at 20 for the last 3 infusions. Now 6 weeks after chemo has finished PSA is on the rise and bone scans etc reveal a that tumours have increased in size - but I am not in pain and I am asymptomatic and no change in my general health and disposition is evident. I am still on the happy pills. Of course I am continuing with Zoladex and have been on denosumab (Xgeva) for six months [side effects of xgeva has been a drippy nose - better than a drippy dick] Saw my oncologist on Monday and I need to choose between Xtandi and Zytiga. I am back to him in 3 weeks. There may be some trials but nothing definite and my thinking is that it is better to choose the devil I know than a trial. So I am now reading up on both. I am thinking that I need to weigh up the side effects and which regime may be the easiest to follow. Did you have a choice? and can you offer me some help in deciding which pill to take. Cheers Chalkie
  23. The long awaited trial results of the phase II trials at Peter Mac were presented at the ESMO European Society Medical Oncologists over the weekend,8th & 9th of September 2017. Near on 23000 participants from 131 Countries are in attendance at the conference. Dr. Hofman and colleagues from Melbourne, Australia presented results from their phase II Lutetium-177 PSMA trial for the treatment of metastatic castrate-resistant prostate cancer. This treatment provides an opportunity for new therapeutic technology to be used to improve survival. Another interesting article presented at the same session was Targeted Alpha Therapy(TAT) by Professor Johann de Bono from the UK He discussed the future of targeted alpha therapy. Dr. de Bono shared a comprehensive slide delineating the timeline of alpha-emitting radionuclide therapy in oncology, specifically highlighting radium-223 approval in mCRPC in 2013 and the first patient being treated with Thorium-227 in 2016. The study conclusion: In conclusion, this phase II trial demonstrates that 177Lu-PSMA treatment for patients with mCRPC who have failed standard therapy provides encouraging response rates with acceptable toxicity, in addition to improved QoL and pain reduction. Based on this trial, we eagerly await the results of larger studies with long-term follow-up. This information is on the URO Today site.. Lutetium Trial Results September 2017 ESMO (This is on UroToday. It is only available to UroToday members, so you will have to join up to see it. Joining is free.) countries are attending the 2017 Congress, being held 8 to 12 September in Madrid 23,000 participants from 131 countries are attending th2017 Congress, being held 8 to 12 September in Madrid
  24. Hi all, Is there a written summary of what Mark Moyad said? Was there anything useful within what he said? Did he tell us of some new treatment now available, and not "years away" which might work? I hazard a guess that this is what we all really want to know. So much is said about Pca, but what is really wanted is where to get a cure if at all possible. I have not had a chance to fully wade through 2 hours of discussions. Try to keep well, but Unkel Fait is watching....... Patrick Turner.
  25. Due to a minor malfunction in Jim's brain, this video was unavailable for a few hours. The video is available again. Jim's brain continues to be a problem. Jim
  26. Due to a minor malfunction in Jim's brain, this video was unavailable for a few hours. The video is available again. Jim's brain continues to be a problem. Jim
  27. Safe Travel and enjoy the conference. Cheers David PS Remember the duty free!!!!!!
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