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  2. How is Nev?

    Delighted to hear Nev is doing better from his mates Stateside!
  3. How is Nev?

    Many thanks for the update, Jim. Nev and I will be able to swap our pacemaker experiences, sudden as they both were! Cheers, Alan!
  4. Dad was fatigued and off his food the last 3 days so I last called the ambos last night to get a check out on my father's heart. Heart all fine and beating well, so opted not to take him into hospital, even after the ambos gave us the choice to get him checked out in hospital because of his heart history. So took him to the GP today. GP checked him out and said he is probably anemic because of being deficient in vitamins and minerals due to this prostate cancer. His Hemoglobin has been low but their was in increase from a blood test in February compared to his December blood test. PSA under 1. Explained to the GP that my Dad was getting better and had more energy and was eating well and had gained 8kg in 2 months. Yet the GP prescribed him Ensure Powder and Ferrograd C after checking his computer. Kickbacks? Comparing Sustagen and Ensure Powder and felt they were mostly comparable but Sustagen was better due to less Sodium and Potassium. With Ferrograd C I am now skeptical about after watching the clip above. I am going to give him a multivitamin as the Ferrograd C is quite a big hit of Iron and I wary of it potentially damaging his heart further. If he doesn't improve I will have to either get his Iron levels checked out or just take him to emergency to get him a blood transfusion or two.
  5. How is Nev?

    Victorian members will know that Nev Black could not come with me to the recent Victorian Face-to-a-name meeting because of his sudden need for a pacemaker. Members further north will know that Nev had to miss the Queensland and Northern NSW Face-to-a-name meeting a week later because he was hospitalized with an infection from the operation. I am happy to report that Nev is at home and has been up and about for the past couple days, and seems to have completely recovered from the infection (and from the rather fierce medicine that cured it.) Jim
  6. Side effects of Xtandi

    Thanks for your input Chuck. I am not convinced that Zytiga had actually stopped working, as the symptoms were unusual. After two years with no problems, suddenly I had a number of lymph glands in my throat swell and were very tender to the touch. A biopsy found PCa in them, but who knows it could have been there all along and the rapid swelling and tenderness due to something unrelated. On research, my current problem could be related to low potassium levels which I would have thought they would have picked up, but maybe not. I am off for blood test now and will raise the possibility of resuming Zytiga with my Med Onc on monday.
  7. Side effects of Xtandi

    What would have been interesting is what was your blood pressure readings before what you call "dropped" as well as your pulse rate? A systolic level of 120 or less is normal/over 120 to 129 is considered elevated but not yet "high." A diastolic level of 65 is great. And for pulse rate, anywhere from 60 to 100 is within appropriate range; those who regularly work out could have the lower side of this range but others within this range are normal counts. It would appear your 120/65 would be where you would want to be rather than any higher, and your pulse rate appears in the norm for most people. I was on Zytiga for just sort of 6 years with no appreciable concerns, and on Xtandi for a few months with the same lack of concern. More recently, with Xtandi providing no relief from slow PSA elevation, gave up on it and recently returned to Zytiga to see if it will "kick in" again - this can happen as it did when I first started Zytiga some years ago. PSA dropped a bit, then elevated, stopped Zytiga, learned it can "kick back in" so went back on, and it was from there that Zytiga was effective for nearly six years.
  8. Side effects of Xtandi

    Hi Kezza2 and to everyone else. I've had ADT since 2010, and in 2011 I began to get bad hypotension where I'd feel dizzy after standing, after sitting for awhile. This got worse with Abiraterone and I got a dizzy spell on my bicycle, but I rested for 2 minutes, then carried on. Docs said its a blood pressure regulation thing where BP goes low. Docs have no clue how to fix it. But side effect of Abi is 3 different heart related issues, so if a man is crook before taking Abi, he may crooker while taking it. My Abi is wearing off now after 8 months, and maybe I go to Enzo ( Xtandi ) and see if I can grab a few more months before chemo etc. I looked up Abi online it seems it makes a man secret sodium, Na, and also potassium, K, goes low, so I ate more English spinach and mushrooms and that fixed the K levels if they were low, and a blood test confirmed that. But low Na levels meant I should use more salt, and I was a low salt eater, and after lot more salt and a large jar of Vegemite over a month, the hypo-dizzy-crap has lessened and I am continuing to cycle 200km+ per week regularly. But during hot heatwaves this summer the hypotension was not good, and I could not sleep until 1AM when house cooled a bit, so I wasn't sleeping well, and sweated huge amounts on bike. But I was regarded by docs as super fit when diagnosed 2009, and have stayed that way. BMI 24, resting HR 48 and recovery after a severely gut busting ride is fine, and at 70, I am faster than all the other 70yo in a cycling group and they all have normal testosterone levels because they have not had any Pca treatments. I'm averaging 24kph on country roads with plenty of hills and if I hadn't been treated for Pca with ADT et all I'd be about 3kph faster. Technically, I prove a man does not need testosterone. It has a benefit in the cycling group where occasionally a foolhardy lady turns up for the 60 to 80km ride. After the young blokes have ridden away from us oldies, and if the lady is 35, and fit, she may just keep up with me on hills, and so its then a pleasure to ride with the lady, rather than be in the de-facto race that occurs whenever 2 or more men ride "together". ( pardon the diversion ). It seems to me that keeping fit, not just healthy, and having a mainly vego diet does me good, and makes me strong so I don't suffer the worst of side effects. Enzo may be more difficult to get used to and if my fitness has increased my ability to survive side effects then it may happen with Enzo. I won't know until I begin taking Enzo. If Enzo is all there is, there's no choice. Fitness is a strange thing, and it stimulates the immune system to work well, except that the IS sees the cancer as friendly cells, so my guess is that the cancer may get assistance to live better like other friendly cells, and unless someone carried out serious research on my blood before, during, after exercise, with DNA profiling etc, nobody really knows if fitness slows your cancer. Fitness makes you more realistic about death and there's no point IMHO to not exercise to find out if cancer growth slows down, Ie, Psa rise is slowed. Between February to May in 2017, I had double knee replacement, and wasn't able to ride. I walked a km on crutches when I could. But that wasn't anything like a typical 70km ride. Psa went relentlessly upwards as the Lucrin and Cosadex failed. So I may as well keep cycling, and not worry if I drop dead on the bike. I won't worry at all after I drop dead. Doctors are overjoyed to see me turn up at hospitals dressed in Lycra, and I don't whinge about everything. I'm among the 5% of patients who appear to take all the advice about health and fitness. Yea, he looks good, shame about the gallium scans! I might be a good looking corpse as well. This Pca thing is something I can't win at, OK, so when I gotta go, OK, I'll go, but I like to keep everyone smiling around me, and be nice to medicos before I depart. Patrick Turner.
  9. Side effects of Xtandi

    Kezza, I have been on enza + Lucrin for almost 4 years now - 4 tablets enza daily Main side effect is some extra fatigue compared to previous Lucrin alone. Have also been on Micardis 80mg for high blood pressure and even with that my BP is normally about 150/90. I have not had any low blood pressure problems. Tony Max
  10. Side effects of Xtandi

    Hi Kezza, I took Xtandi for about 9 months (until it too failed). I had no noticeable side effects at all. What else are you on? Denosumab perhaps? Cheers, Tony
  11. Side effects of Xtandi

    Just seeking advice from others taking Xtandi (enzalutimide). I have just started my seventh week on Xtandi having been on an abiraterone trial for the previous two years until it failed. I find I am having episodes of dropping blood pressure for no apparent reason, everything will be going along OK then suddenly BP will drop, for example today's episode it dropped to 120/65 and pulse rate jumped to 98 and I began to sweat without me moving. I went to the local hospital when these episodes first started. and they did ECG and bloods, and pronounced me fit and well and sent me home. I see my Onc next monday so maybe she will have a reason. My question is has anybody else taking Xtandi experienced similar side effects, or any other side effects for that matter

    G'day Tim, On Ra223 (Xofigo), the present PBS position is a PBAC recommendation to the Minister that it be approved for use IF the patient has had no prior cabazitaxel (Taxotere chemo), enzalutamide (Xtandi) or abiraterone (Zytiga). However, it is possible that these constraints may be grandfathered (waived) for patients who have had one or more of these treatments prior to either the date of the PBAC recommendation or the date that RA223 becomes eligible for PBS / Medicare subsidy. You've had early chemo in conjunction with your ADT (Zoladex+Cosudex) which was appropriately aggressive for your high Gleason score and PSA, and indicates that your oncologist is on the ball and looking at recent clinical trial outcomes. The gallium 68-PSMA / PET scan and PSA is the best way of tracking progressive disease - which you're doing. Like you, I think statistical averages are useless predictors for individuals - especially in the absence of 95% confidence limits, which medicos sadly seldom communicate to their patients. An increase of PSA from 0.8 to 8 and a single remaining lesion is worth following up - perhaps with SABR (stereotactic radiation), as you are contemplating. Although the spot-welding concept is persuasive, the evidence of efficacy for high Gleason patients (yours was 9) is still thin on the ground. You might therefore want to discuss parallel systemic treatment with your oncologist, since micrometastasis may not yet be visible on your scans. Keep up your positive lifestyle, relationships and attitude - they all help a lot! Cheers, Alan

    Where to go following Zoladex/Casodex failure plus metastasized lesion on one rib This explanation of Xofigo/Alpharadin/Radium 223 from the U.S. National Cancer Institute: https://www.cancer.gov/types/prostate/research/radium-223-improves-survival It would appear, however, that since you are not experiencing pain from the rib lesion, the consensus of the medical community may be that stereotactic body radiotherapy (SBRT) targeted directly to that lesion would be the preferred – and much less costly – preference for treatment. I would hope, too, with metastasis being present, that you have been prescribed and are being intravenously administered either a bisphosphonate (Zometa/zoledronic acid) every 12 weeks or so, or the more recent preference, denosumab in the form of Xgeva as a subcutaneous injection every 28 days. As to the next step with failing Zoladex and Casodex. A possible consideration to discuss with your treating Medical Oncologist would be Zytiga/abiraterone to shut down the three sources of testosterone production (testicular, adrenal glands, and that testosterone that cancer cells can produce within themselves), and the antiandrogen nilutamide/Nilandron whose action on cancer cell androgen receptors is somewhat different than bicalutamide/Casodex and flutamide/Eulexin and appears more effective. Explained further here with more explanations available on the internet: http://www.medicalook.com/reviews/Nilutamide.html

    Tim, See my history including last 3-4 years on Enza in the my story section of forums. There are often huge differences person to person of course. My most recent PSA (today) is 1.07 We are all trying to digest the potential complex approval conditions for Xofigo and work out how they can be widened. My next options when Enza fails is to try Abiraterone (available in another part of the clinical trial I am on) then surgery or some type of radiation on my lymph node. Hope this helps a bit and happy to talk further Regards Tony Maxwell

    I was diagnosed 2009 with Gleason 9 although Psa had only just gone over 5.5. Docs opened me up, found too much cancer, took out two lower lymph nodes and other tissue samples and found no spread. I was in the 1% of patients who could not have an RP - so the doc told me - but that could have been a lie, maybe more like me. I should had biopsy at Psa 3 when I bet they would have found a Gleason 5 or 6 in 2005. Well, I had standard 70Gy EBRT to PG, and I'm still on Lucrin, ie, ADT injected monthly, and that alone worked until 2016, then it failed, and I went to Melbourne for stereotactic with Calypso at Epworth for an additional 30Gy to PG but two upper lymph nodes were found in preceding PsMa scan. The scan can only see down to tumor sizes of 2mm, so I figured I could have thousands of tiny mets. The two mets found were given 45Gy each. I also started Cosadex at time of 2016 IMRT and the effects lasted only 7 months, and Psa went to 0.4 then again went over 5. The 2017 scan 9 months ago showed many mets, maybe 20, so that there definitely may be thousands. I was put on Zytiga, abiraterone, and its now just beginning to fade after getting Psa 7 last July to 2.0 in Dec, but was 2.3 last time, expecting 3 in a month and so I just get 8mths from that. I may be given Xtandi, enzalutamide, to see if that works for awhile before Docetaxel, ie, chemo. So chemo is unavoidable, and maybe I "qualify" to get both Lu117 and maybe Ra223 but the cancer is likely to mutate its way around whatever obstacles the doctors put in its way, and treats will be in private hospitals so huge expense is needed. I'm 70, and today I cycled 76km around Canberra. My diet is 95% vegetarian and I presently fast 2 days a week when I don't cycle, but I am doing an average of 250km a week, at 22kph around town, 25kph on country roads, so I'll stop living this rotten anti social life of exercise and antisocial diet when the cancer symptoms actually begin, and when treatment side effects combine to shove me off the bike, and if I end up in serous pain, I hope the morphine works, and I may beg for an overdose. I just don't know when it will be, but I read where 95% die within 5 years after discovery of bone mets based on CT scans finding large lesions in bones. PsMa is detecting the same lesions when they are smaller, so maybe I live 7 years from 2017. Its extremely optimistic to say that, maybe I am dead in 3 years. Lu117 has been said to extend life by median amount of 13 months, and I don't know what Ra223 gives, but it seems NONE of these applied remedies lead to remission except in a tiny number of cases. Some men want Lu117 as soon as they are diagnosed. Docs don't agree. You might get a good result initially, but there are going to be survivor cells after RT so the cancer is seldom ever totally killed off by any known treatment, and survivors are known to be more untreatable, so thus a protocol of successive treatments are given to maximize QOL. A healthy active lifestyle is a nice thing to enjoy, even when it is masochistic, ie, I'll cycle up hills in serious pain, gasping for breath, heart barely able to stay in my chest, and I hear the stupid voice saying "oh what fun" and a sillier voice saying "this'll make the cancer quit" but cancer doesn't quit, or take any notice of our humble human activities and it makes ppl do all sorts of things because they realise they just ain't got time to dither about, so enjoy it while you can. There are a large number of ppl who get depressed about Nature taking its unwelcome course in our bodies. My guess is they never write to groups like us; they just see gloom, and can't handle the idea that "the game's up pal". I'll accept what the docs have for me. There are not many new treats coming soon enough to be useful to cure my Pca. We were all given a certain DNA and Nature just could not arrange perfect DNA for any of us so none of us get to live forever. I saw my father, sister die of cancer at 60, and I saw so many other folks go down, and despite their own efforts to counter it. So from age 50 I began to think I'd be lucky to see 60, and I asked myself "when's my turn for cancer?" and I didn't have to wait long, and the medical system failed me badly even with yearly Psa tests from 50 onwards. Prevention systems fail, shite happens, and Pca kills 30% of all men diagnosed. Even if they docs had treated my PG better in 2009, they didn't know if I had Pca spread or not, but NEVER assume you have no spread until you have had successful PG treatment, then found no Psa 5 YEARS later. I never seemed to feel depressed after the treatments of RT and ADT completely exterminated all ability to have and enjoy sex, and maybe many men find it gob-smacking to be neutered, especially when young enough to make themselves and a wife happy. After a brief marriage of 18 months after 1976, I figured I'd survive OK if I had not one single female ever touch me again. Well, after my wife of 22 fled for no reason, I wasn't the victim of the bottle or despair but I wanted them to commit to us, or to something, but none would, or could, and I found I could be a nice man but utterly non valued as anyone could be, but so what, life could be just fine without the liabilities of having a family. I've shared house with ppl who have been so depressed that they could not get out of the house some days, and one lady said one day "I hate love" and I thought, Hmm, OK, nothin I could do to change that, and I thought how lucky I was to handle a complete absence of love in life without ever thinking or feeling that love is to be hated, but I do know that finding a lady now is less likely now than being eaten by a shark in the main street of Canberra, the town where I live. One guy I do know has gone from diagnosis, RP, IMRT, ADT and now chemo all within 2.5 years, and he's under 60, has wife and kids, and its a terrible hit for them all, but for a huge number of ppl, this is their life, and I for one have had to accept that my life will end, and those few friends I have will live on without much trouble like millions of others must every day. As a species we are adaptable. I know others who have Pca, alive at 25 years after diagnosis. So treatment that works for some men does not work for others. I am writing a website on electronics, I watch the best TV shows on SBS, I am cycling quite well, and I have friends online all around the world, I cannot rely on Facebook, do not own an i-phone and am symptom free, resting HR 50, BMI 24, looking 55, doctors like me arriving to see them in lycra while everyone else around them is in far worse condition, physically, and mentally. 8 months ago my onco doc said "Patrick, this is a HORRIBLE scan". I didn't bother looking, I just read the report, which said basically, "riddled with cancer". OK, there's nothing anyone could do to stop my DNA doing its version of life. So the doc was more upset than I was. I have continued on, unable to avoid whatever happens when it does. Words are somewhat inadequate to describe the emotional depths we descend into when our cherished life is threatened. Doctors seem able to only extend life, which gets more precious as time passes, and with little future I have confirmed in my mind that no amount of world cruises or new cars or houses would make my last days happier, I want no thing. I find I cannot believe in any spiritual afterlife. It seems natural for me to come to a complete stop, but while alive I am glad I made others happy with my hard work, and I don't much care that they didn't love me. IMHO, cancer is not a challenge sent by some God, but it is one sent by Nature who does not have human characteristics, Nature just is, and the ultimate meaning of Existence is that it has no meaning, it just is until it is not, and at that moment all your pain will cease. My mother at 55 lost her husband at 60, and I was 25; I cried for an hour at the hospital, then did the rest of my life OK after getting over it. My mother survived the loss of her husband, and lived the next 43 years without a man touching her, and she had some sad times. But if I had a dollar for the number of gatherings of friendly ppl at lunches and dinners at her place I'd be quite wealthy. She outlived most of them. You'll live on in the minds of those who love you, if you love them, but I know all this seems easier said than done. Patrick Turner.

    Mate with only one small met I don't think you have a lot to worry about, unless you are looking for a complete cure because there aint no such thing, there's only remission. If your next PET still shows no lymph involvement and only one bone met I would be talking to a radiation onc about stereotactic radiation to knock it off and keep the Zytiga, Xtandi, and Radium 223 up your sleeve for when you really need them, but I'm not a doctor so seek additional professional advice.
  17. HI ALL, After a couple of rises in PSA is appears the old Zoladex/Casodex combo has started to become ineffective and if the trend continues I'm likely to move on to the next treatment option shortly. I've been interested in the discussion around Radium 223a coming under the PBS and the various conditions in which it will be made available. As far as I am aware the next step for me would be Enzalutamide (Xtandi) but I wonder if there is an argument in going straight to Radium 223a if I met the requirements. A quick bit of background. I was diagnosed in July 2015 with a PSA of 120, Gleason score 9 with mets in my right femur and a left rib bone. Chemo and ADT reduced the cancer considerably and dropped PSA to a low of 0.3. Over the next year it slowly rose to 3.2 on Zoladex alone, at which point my oncologist recommended adding Casodex, which worked well, PSA dropping to 0.8. I'd been complaining about the effects of Zoladex - mood swings, depression, lethargy - and he agreed to me taking a break from it. I ended up having six months off Zoladex (which was amazing), on Casodex alone, but when PSA eventually rose back up to 8 we agreed to go back on the Zoladex in October 2017. I had a PSMA PET scan soon after which showed, despite the rising PSA and six months off Zoladex, the lesion had completely gone from my right femur, and prostate and lymph nodes were also clear, with only one small spot on the rib, which hadn't progressed since diagnosis. I've been going pretty hard on a plant-based diet, meditation, exercise, various herbs and supplements, two trips to the Gawler Foundation, and at this point was beginning to believe that I might be winning, despite all medical advice that this was unlikely. Since then, PSA has risen back up to 7 and the assumption is that the cancer is now castrate resistant. I'm interested in other men's experiences at this stage of treatment. It seems to me the effective life you get out of that first form of hormone therapy is a big determinant of overall survival time. I've heard 18 month average for CR M PCa, though I have never felt bound by statistical averages. At age 53, with two kids, 16 and 12, and currently in good health in every other way, exercising regularly, surfing, yoga, pilates, gym, and committed to a healthy diet and lifestyle, I'm determined to hang around as long as possible. But it's tough sometimes to remain disciplined when the message you get from mainstream medicine is that all your efforts will likely make little difference. In short, after zoladex am I likely to be able to access radium 223a under the PBS or is that jumping the gun? With one small met, I am hoping it might be more targeted and effective and less debilitating than Xtandi. I've also been told stereotactic radiation might be effective if next scans show a similar clinical picture, with just the one met. Any advice gratefully received. cheers, Tim
  18. Thanks for all the advice - much appreciated. He did ask for a local last time and it wasn't so bad (or so he tells me). I think we will ask the oncologist if we can have a nurse do the injection next time. It seems to me some have the knack of injecting so that it causes minimal pain and others just aren't so great at it! BTW - my hubby is doing really well considering his psa was 100+ this time last year. PSA was 3 at last test, his hair has grown back after chemo - his energy levels are pretty good and now we just hope the last 5 hits of radium will get rid of his pain in his sit bones. All the best and thanks for your input/advice
  19. Earlier
  20. I guess it's how you get. It was the opposite for me the oncology nurse just stabbed me in the side, she seemed quite shocked when i voiced my displeasure. Luckily I now have a GP who is very good. Just stick with who you trust I guess. In the early day's I had some really bad experiences with inexperienced people who had no idea how to get that large needle in.
  21. I go back to Oncologist office every 3 months and get one of the nurses to administer as they do it every day. My GP did it once and never again
  22. For Aussieflicker: Diphereline, better known as triptorelin w/brand name Trelstar, is another of the LHRH agonists. If what you posted is in the form of a question, or even if as a statement as to working, while prescribed "diphereline" and Androcur/cyproterone (an antiandrogen), and assuming your question (or statement) is more regarding prostate cancer management, difficult to determine whether one is being more effective then the other. Your PSA level would best determine if the two are both playing a role in significant lowering of your PSA. If you were only prescribed one or the other, then one could determine if that one, alone is being effective on its own.
  23. Lutetium177 Clinical Trial

    I am on your team Patrick - Getting the dreaded big C has changed my life. And like you I am a non believer. What it has done for me has make me go to the gym 3 times a week and as a result the only time that I was as fit as I am now was at the end of recruit training at Puckka in 1968. I am enjoying life - Zolodex has removed one complication from my life but knocked 40 m off my drives on the golf course. I was fatigued today playing golf in the heat of the mid afternoon sun - I said to myself while Xtandi can cause fatigue so does old age. A few hot flushes on a hot afternoon is a bummer but when the slightest of breezes blows its cooling impact is somewhat invigorating and certainly welcomed. In 2005 I was given 2-5 years so I am well and truly on profit. When people as me how are you? I say "Wonderful!" and then I add, "Before I had my Prostate out I used to say 'Dangerous'!" The biggest bulldust story I heard was that the way to cure cancer is to mix bi-carbsoda with Canadian maplesyrup as cancer will source the sugar in the maple syrup and deliver acid to the cancer and bingo the cancer is knocked off! There is alway some encouraging news in the paper such as what was in the press yesterday are always encouraging: A VACCINE could one day protect men from developing prostate cancer, thanks to a breakthrough by British scientists. Experts have designed a vaccine that boosts the immune system’s ability to track down and kill the cancer cells as soon as they start to appear. The research is at an early stage, but scientists from Queen’s University Belfast believe their findings could be used to vaccinate young men against prostate cancer. It could also enable the body to kill off tumours in men who already have the cancer. (Sun Herald Wed Mar 7)
  24. Lutetium177 Clinical Trial

    About ketogenic diet. I had a long series of emails with someone months ago who begged me to try ketogenic, and he supplied a pile of bullshit arguments supporting the ketogenic diet which essentially is a non-balanced starvation diet where you have no carbohydrate input to reduce blood glucose levels to "very low" and because of this constant reduced glucose level, the cancer is slowed, and may even die off. The proponent of ketogenic said Pca like many cancers needs lots of glucose to grow, but this is just no so; Pca grows just fine with very low blood glucose, because it is generally a very slow growing cancer. So a man will die trying to diet the cancer away. I begged the guy promoting ketogenic for incontrovertible proof that ketogenic works, but he could NOT give me any, and the only info was anecdotal remarks plus referral to Grandiose Bullshitters on a few fancy glossy websites with pictures of mistaken young men holding forth in the language of Jargonese. What I thought I needed to realise was to think every idea about curing PCa was bullshit, ie, fake information - until proven otherwise. I read good things about enzalutamide, it is a possible next drug for me before chemo, systemic Lu117, and I still won't get a cure, just a bit more time. Yesterday, I spent 3 hours mowing grass and tidying up to make the house look like Sum Bahstude lives here, and still another 2 hours to do tomorra. Today I cycled 64Km, in fabulous weather. But up one hill some guy about 45 overtook me so fast I could not ask him "what took ya so long ? " It is amazin what a castrated old bloke riddled with cancer can do. I've had a fairly good life, and I never think about God, mainly because, IMHO, God is not there to be thought about, and instead of having any thoughts about God, its much better to make others around you happy, which is difficult, because I've found a number of ppl who have gone so far to say they hate love. I am slowly accepting the idea of dying, and completely ceasing to exist, and meaning nothing more to any one than the full stop after what I type. Patrick Turner.
  25. Lutetium177 Clinical Trial

    For sure @timbaker. I will send you a test email shortly, to make first contact. Cheers Paul.
  26. Lutetium177 Clinical Trial

    Hey Paul, for sure. You can email me tim@bytimbaker.com - I actually feel strongly that there needs to be a new protocol developed for younger patients taking into account their circumstances. Everything modern medicine has to offer me is bad for my overall health and the message I've been given is that there's nothing meaningful I can do for my self so if you want to research diet, exercise, meditation, herbs and supplements the oncologists scoff dismissively and you are on your own trying to sort out whats credible and what's snake oil. I try and keep it simple - my mantra is N.E.A.R - which stands for nutrition, exercise, attitude, rest. I try and tick each of those boxes each day and that helps me feel like I'm on track. Who knows if it helps my prognosis but as we know from the placebo effect even the belief that it is helping is likely to be beneficial. Good luck and please do keep in touch. I've signed up for a University of Qld study here using high intensity training and what they call 'psycho-social' support which appears to consist of nothing more than a monthly newsletter so there's a long way to go to achieve some sort of holistic approach to this. cheers, Tim
  27. And my GP, he to gives me a local anaesthetic first. So, no pain. And as he bulk bills no financial pain either! My comment ; ask your Oncologist to either give you an anaesthetic or refer you back to your GP for this 3 monthly injection.
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